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Swirls of chaos with pictures of different emotions and experiences to reflect the complexity of grief

Understanding Loss and Grief To Support Others

Posted on May 15, 2024May 15, 2024by

Loss and Grief: Experienced By All, Discussed by Few

I love discussing loss and grief. Yes, you read that right; I get excited to discuss two topics that most people avoid. The other night I had the privilege of leading a discussion among peer specialists about providing support for someone experiencing loss and grief and it was amazing. The reason I love discussing this topic so much is because of the incredible, positive impact you can have on someone if you can be present with them during their loss and grief journey. Many feel so alone in grief, but it doesn’t have to be that way. It shouldn’t be that way. Despite the fact that every human encounters these experiences, we, as a collective group, struggle to be supportive and understand what’s occurring. What follows is information meant to help raise awareness of the realities of loss and grief. There are various areas of thought on these topics, and what’s discussed below is not all inclusive and is heavily biased from my education and work in the field*. I’ve also included insights from some of the peers who participated in the discussion the other day. Hopefully this will spark a pursuit of further learning within you to strengthen your ability to support others through loss and grief.

*I am a licensed professional counselor in Pennsylvania. During her time providing direct care, I specialized in grief and loss.

Loss

Loss is the experience of being deprived of, or having taken away, someone or something meaningful. Yes, loss is not only the death of someone; loss occurs in more ways than most realize. Just a few examples:

Loss of certain dreams when you can’t continue school
Loss of childhood innocence for the child who witnesses violence, hears gunshots, experiences the pains of hunger
Loss of rights and/or freedom for the person who is convicted of a crime, even if they’ve served their “punishment”
Loss of physical ability due to injury, illness, etc.

While different, all forms of loss are equally valid and cannot be compared. Furthermore, loss is like a nick in the windshield, where the initial damage (loss) may be a certain size or impact, it can spiderweb to impact more and more. Many losses are not immediately realized by the person or those around them and some are never recognized by others. Loss denotes any event where there is a significant absence of something or someone previously integral to a person’s life or something that was hoped to be part of their life. It’s important to recognize that not all losses are sad. There’s an expectation that loss will result in feelings of sadness and despair, but that isn’t always true nor is it required.

Loss of Control
As Peer Specialist Talynn Smykle- feeling a loss of control encompasses everything that happens when you experience a loss. Losing something or someone can make us feel out of control and lead us to try and regain control, even if it isn’t the healthiest choice or best thing to do in the long-run. The sense of being out of control of our life, our world, can be extremely scary and should be recognized as a potential contributor to the grief experienced.

Whenever there's a loss, in any way, shape, or form, it can touch your life in so many different ways that you didn't even think were important until it actually happens.

Marti Blose, Certified Peeer Counselor

Grief

Grief is the emotional, physical, cognitive, and behavioral responses to loss; the experience of the loss. Even though it is a universal experience, grief is unique to each individual and how is presents can vary by loss, nature of the relationship, coping skills, previous experiences with grief, and so many more variables. For example, identical twin sisters could both experience the death of their father and have two completely different grief experiences. Because of how individualized grief is, it’s important that, when offering support to someone grieving, we never push what works for us or what we think is “best.”

“Normal” (Uncomplicated) Grief

The “typical” emotional, cognitive, and physical reactions following a loss. A relatively predictable pattern of acute distress that gradually lessons over time. This can include feelings of sadness, anger, guilt, anxiety, yearning, sleep interruptions, and appetite changes. The person gradually adapts to the loss and begins adjusting to their new life.

Complicated Grief

An extended grieving period that interferes with the person’s ability to function in daily life. There is difficulty or an inability to accept and adjust to the loss. The feelings described for “normal” grief are experienced at a greater extent – debilitating sadness, feelings of emptiness or meaninglessness, inability to engage in happy memories and stories.

Anticipatory Grief

Grief experienced before an impending loss. Mourning begins prior to the loss of someone or something. These feelings can include fear, anxiety, sadness, and a feeling of dread. This may help with the grief experience after the loss, and it may not. You may have heard someone say “it’s easier because they knew it was coming.” A loss is a loss, regardless of advanced notice or sudden occurrence. Anticipatory grief can itself be complicated and deserves as much support as post-loss grief experiences.

Disenfranchised Grief

When grief is not acknowledged or socially supported because of the nature of the loss or relationship. Examples include:

Death by suicide due to the stigma associated with stigma
Death of a former romantic partner
Incarceration of a loved one
Infertility

Individuals may feel like they have to hide their grief or that their grief isn’t valid. This can lead to increased feelings of isolation and sadness. Because of the lack of social support and recognition of the loss/grief, healing can be challenging. Acknowledging and respecting the loss/grief is essential when providing support.

A loss of life is a loss of life. This is a human life we're talking about.

Roger Crouell, Certified Recovery Specialist Tweet

Stages and Tasks

Stages of Grief

Many people have heard of Elizabeth Kubler-Ross’ theory of the five stages of grief. While significant, it’s important to understand that Kubler-Ross’ work was studying the experience of individuals dying and their grief experience, not the grief experience of those mourning the death. For that reason and others, this article will not be discussing the stages of grief. However, if it is a theory that helps you or someone you are supporting in navigating their grief, then embrace it and use what works for you/them. David Kessler, who studied under Kubler-Ross, has expanded upon her work in his book, Finding Meaning: The Sixth Stage of Grief. Marti described this book is extremely impactful and beneficial, so I take that as a great recommendation. To learn more about the stages of grief, you can visit grief.com.

Tasks of Mourning

I personally prefer William Worden’s Four Tasks of Mourning, as it is less linear, more culturally inclusive, and places the person grieving as more active in their grief rather than passively having grief happen to them. Unfortunately, there isn’t a verified source of Worden’s work online, but a helpful resource can be found here. It’s important to understand the tasks are not linear, although they are numbered. Instead, a person can revisit tasks, experience multiple at the same time, and have the tasks recur in the future. I personally prefer this model because it better reflect the fluidity of grief and how, in many ways, it is a life-long process and experience. While Worden’s tasks were specifically for grief following a death, they can be applied to any type of loss. The following information is all based on Worden’s book, Grief Counseling and Grief Therapy.

Task 1: Accept the reality of the loss

The person comes to a place of recognizing the permanency of the loss. Difficulty with this task can look like denial, disbelief, magical thinking, etc. (complicated grief).

Task 2: Process the pain of the grief

Perhaps the component of grief that makes others the most uncomfortable. We cannot ignore the pain, the emotions, the thoughts. The harder we try to ignore them, the stronger and more overwhelming they will be whenever they get their chance to break through. Sitting, not speaking, not trying to “fix” anything, just sitting with a person in their grief can be the most significant act of support we can offer. Many supporters may believe that talking about the loss will be more painful. In reality, the person is going to be thinking about the loss regardless of you bringing it up, what you can offer them is a safe and supportive space to have those thoughts, recall those memories, laugh about jokes, etc.

Task 3: Adjust to a world without the deceased

We see a timeline set on grief through a predetermined allotment of bereavement days. In reality, grief is, in many ways, truly kicking in when the rest of the world “moves on.” Dependent on the loss, there can be a significant impact on the day-to-day of the person. A new way of existing in the new world, a world without the person or thing that was lost, must be developed. Difficulty in this process can appear as someone who isolates to the extent of not leaving their house, never returning to work, demonstrating poor hygiene, etc. (complicated grief). Marti Blose, Certified Peer Counselor, perhaps said it best, “grief and loss necessitates the word change and we don’t like change very much. we really hold on to the things we can. and when loss is experienced, that always in some way necessitates change.”

Task 4: Find an enduring connection with the deceased while embarking on a new life

The loss of someone or something does not erase the relationship or the meaning of the entity in a person’s life. That person or thing still holds meaning, it will just be in a different form after the loss. This can look like a nonprofit being started to address a loved one’s cause of death, or a commitment to take certain actions moving forward. The form of the connection doesn’t matter, what matters is that the person feels the connection.

Receive support for your grief/loss

The following peers were either mentioned above or are peers who offer grief support.

Marti Blose

Roger Crouell

Talynn Smykle

Belinda Ennis

Melissa Saady

Loss and Grief: Experienced By All, Discussed by Few I love discussing loss and grief. Yes, you read that right; I get excited to discuss two topics that most people avoid. The other night I had the privilege of leading a discussion among peer specialists about providing support for someone experiencing loss and grief and […]

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Ken Dun on Meet The Peer Joy in Recovery

Embracing Joy In Recovery: It’s Possible and Okay to Have Fun

Posted on May 13, 2024July 18, 2024by

Whitney

Ken Dunn, Recovery Coach and Chief Joy Facilitator | Meet The Peer

Joy and the recovery journey aren’t usually synonymous, but if Ken Dunn, Chief Joy Facilitator has his way, that won’t be the case for much longer. With an emphasis on the importance of joy and play when pursuing a goal, learning something new, or taking on a challenge, he delivers a message of hope and inspiration. Sharing his lived experience with substance use, work, and video game addiction, Ken discusses the importance of mindfulness and acceptance. Additionally, Ken encourages everyone to design their own recovery pathway – finding what works for them and knowing that their recovery is truly theirs.

Connect with Ken: https://straightupcare.org/consultant-profile/515

Click here for the episode’s full transcript.

Has Ken inspired you to get outdoors? Check out 6 Free Nature-Based Activities for Improved Mental Health and Wellbeing.

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Transcript

Whitney (00:48)
I’m your host, Whitney Menarcheck, and on this episode of Meet the Peer, we have Ken Dunn, Chief Joy Facilitator in North Carolina. Welcome, Ken.

Ken Dunn (00:56)
Hey Whitney, thanks for having me.

Whitney (00:59)
Thank you for joining us, Chief Joy Facilitator. That is not a title I hear very often. Can you tell me, and all of us, what exactly that entails?

Ken Dunn (01:10)
Yeah, I mean, obviously that’s a title I’ve made up for myself. What I do that’s different than what some others might do is I facilitate a lot of group activities and those group activities are often surrounding some sort of fun activity. It might be community drumming or going on a day hike or it might be playing frisbee golf or some other activity. And, you know, the primary focus of these activities is to have fun and just learn that it’s possible and okay to have fun in recovery. And so, you know, I want to really stress joy, how important joy is, and it’s really important to understand that play really makes learning a lot easier. So if we’re holding real tight to whatever it is we’re trying to learn or goals that we’re trying to accomplish, they’re just that much harder. And as soon as we introduce an element of play, everything becomes easier and it’s fun. Who doesn’t want to have some fun. So I really tried to stay focused on that.

Whitney (02:13)
I love that. I mean, I just think about how much, you know, we tend to be in a negative or stressful state. And if we can take something that’s very serious but make it enjoyable, how much more impactful and long-standing it can be.

Ken Dunn (02:27)
Absolutely. Yeah, we take a lot of things very seriously and you know, some things are very serious and we need to meet them that way. But there are a lot of things that we just kind of stay in a serious state where, where we can have fun. There’s not a reason why we, we couldn’t have fun. So let’s do it.

Whitney (02:43)
Right? And so you do groups and work with individuals. Let’s take a couple steps back. What is your journey? What led you to the place where you are now supporting others?

Ken Dunn (02:55)
Sure. Yeah, so I really struggled a lot with substance use. My primary drug was alcohol. I also spent a lot of time playing video games and I had a real serious relationship with work that took me away from my family. And it really was a place where I avoided a lot of the difficult things that were in front of me. So I had that experience. I was 46 when I decided to get into recovery.

It was at the end of a relationship and I had to really take a serious look at what was going on in my life and see that I was really doing a lot of harm to myself and harm to those people around me. I actually got sober sort of through the back door. I was doing meditation as a way to deal with some intrusive thoughts and other mental health issues. In that process…I found a Buddhist based, sorry, I was going to say 12-step, but a Buddhist based recovery program that focused on mindfulness and meditation. And I thought I was going to use that program to moderate. And it didn’t work like that for me. You know, after a period of time of thinking I was going to moderate, I eventually woke up one morning and was like, oh, I guess the reality is I actually need recovery. I can’t keep playing around with alcohol as if it’s not dangerous to my life. So after a little bit of introspection and arguing with myself and going back and forth, I eventually just decided to just throw myself into it. And that Buddhist-based program was working pretty well for me, so I really dedicated myself to that program and to just getting as much out of it as I could, doing as much healing as I could. And that was just the beginning. You know, I think for a lot of people, once we get in there and we start working programs, we realize there are a lot of other things going on. It led me to a place where I realized that, you know, alcohol, work, video games, whatever the processes or behaviors were, were really just avoidance of the underlying mental health issues that I was struggling with. You know, eventually I made my way into adult children of alcoholics and dysfunctional families and really saw, you know, the way the generational trauma that my family has endured has affected me and caused a lot of my behaviors. So I’m now seven years in recovery from alcohol, work, and video games. I actually haven’t engaged in any of those things in an unhealthy way. Since I started my journey, I’ve been working a program at ACA for three years. And along that time, I’ve also worked pretty closely with a couple of therapists and dipped my toe into some other programs as well. But that’s my current path.

Whitney (06:07)
Now, the Buddhist-based program, that’s not something that I personally have heard much about. Could you provide kind of an overview of any of the key components that may be relevant for someone to hear about?

Ken Dunn (06:24)
Sure. Yeah, there are two fairly well-known Buddhist-based recovery programs. Those are Refuge Recovery and Recovery Dharma. I currently practice with Recovery Dharma. I started my path with Refuge Recovery, and because of some reasons, I moved to Recovery Dharma. But those programs, they both bear a fair amount of similarity. They’re both based on mindfulness and meditation. And they use a…set of teachings by the Buddha which are called the Four Noble Truths and the Eightfold Path. And the Four Noble Truths is a really simple observance of life, basically, that in life there is suffering. That’s the First Noble Truth. The Second Noble Truth is that suffering is caused by craving and aversion. The Third Noble Truth is that there is a path to the end of suffering. And the Fourth Noble Truth is this thing called the Eightfold Path, which is series of teachings, wise mindfulness, wise livelihood, wise effort, wise action, eight in total. And it’s really based on seeing life for what it really is, you know, seeing your patterns, your behaviors, seeing the way that we sometimes can become aversive or crave and trying to just sit with that and recognize it for what it is, you know, without trying to change accepting life on life’s terms. And for me, it’s really come down to just simply acceptance, realizing that difficult things are gonna come up in life. And some of them I have the ability to change and some I don’t. And if I can simply accept the things for what they are, then I’ll suffer a lot less because I won’t be trying to change things that I can’t change. And so it really is very liberating. Or it is very liberating for me, I should say. It’s the right…It’s the right language that suits me well.

Whitney (08:24)
It sounds liberating and I see some similarities, the 12 step, the serenity prayer and things like that. But I think that, like you said, language, it’s an approach that’s, this is the uniqueness of recovery is that there’s a different style out there for everyone and sometimes you make your own style as you go, similar to what you’re doing with your outdoors activities, fun, joy, play.

Ken Dunn (08:32)
Absolutely.

Yeah, absolutely.

Whitney (08:54)
It sounds like you are also kind of leading a different way to look at recovery and experience it.

Ken Dunn (09:02)
Yeah, I mean, I don’t feel like I’m leading necessarily, but I’m taking some of the things that I’ve learned from others and I’m trying to put them as best as possible to use. So yeah, and just to go back to one of the things that you said, you know, I see a lot of similarity between 12-step and Buddhist recovery programs. There are a lot of people who don’t feel that way. You know, I do practice ACA, which is a 12-step based program and frankly, I don’t think that without my Buddhist teachings, without the Buddhist path, I would be able to really work a 12-step program. I needed that foundation to be able to really understand 12-step work. And that was just for me, right? The way my brain worked, it really required me to get some other teachings under my belt before I was really ready to see 12-step as being really as useful and powerful as it is, you know. So, and one of the things that I’ve learned, through my process is that everybody’s got their own path to get there, however they have to get there. I see people that come from 12-step programs and come to Buddhist-based programs later, and they’re like, oh, this is what I was missing. It was the next thing that a person needed. And for me, I kind of went the other route, and it was what was right for me. So I feel like it really sets me up to be well-suited for. A multiple pathways approach to allowing others to have their own approach for their own recovery.

Whitney (10:32)
and you are supporting others, you have your lived experience, you’re helping others with similar lived experiences, what led you to take on that type of role?

Ken Dunn (10:44)
Well, you know, I think a lot of it had to do with the fact that I got a lot of benefit from the benefit. I benefited directly from the lived experience of others. You know, I got to see how others had changed their lives and how their lives were better and actually seeing others live the life they wanted to live. And it was very inspiring, you know, when you see somebody else that’s conquered or is in the process of conquering and healing and making progress and growth. Now, it’s motivating and it’s inspiring. And so, you know, I kind of was in a place where I didn’t have a lot of purpose in my life. My career, my previous career, paid the bills pretty well and it had, there was some glamor to it. However, it just didn’t feel like any purpose whatsoever. And when I found peer support, it was immediately like a light bulb went off, you know, and, um, frankly, I had recently just had a sort of spiritual awakening, and the two things kind of came together at the same time, and it was like, oh, this is what I meant to do. You know, this is where I belong.

Whitney (11:50)
That’s very powerful.

Ken Dunn (11:52)
That it is, yeah.

Whitney (11:56)
And you know, whenever you mentioned you had a previous career that was paying the bills, it reminds me that you mentioned that you’re, you haven’t, you said you haven’t engaged in playing video games or work in an unhealthy way for seven years, which is amazing. Congratulations. Those are two areas. I think video games, you know, there’s a lot more attention to that becoming something that you can have unhealthy, you know, an unhealthy relationship with work.

Ken Dunn (12:12)
Thank you.

Whitney (12:24)
we almost have a society that pushes you to have an unhealthy relationship with it. I’m curious what your thoughts are in having gone through an almost more traditional recovery pathway with a substance compared to a process, which is video games, as well as work. What was that like having those different experiences?

Ken Dunn (12:46)
Well, I’m going to answer your question the best I hear it. So at the time when I sort of hit my bottom, I was in this place where I was playing video games when I wasn’t working. And I was working when I wasn’t playing video games. And there was alcohol involved and all the video games playing. It was basically work, play video games, drink, and sleep. And that was my life.
You know, when I got into recovery and I was really doing some of this deep, uh, personal investigation, I realized, uh, pretty quickly that, you know, my life was being consumed by my work. I was spending, you know, 10, 12 hours a day, some days longer. And, you know, I was really using work as a way to avoid difficult experiences, you know, whether it was difficult relationships with my partner at the time or whether it was difficult discussions with my children or showing up at events that I didn’t necessarily want to go to. Almost no one will ever tell you that you should neglect work to go do other things, right? It’s part of our social conditioning. And for many of us, we’ve been conditioned that productivity is really valuable, that your value is tied to your productivity. And… I was right there, you know, I mean, I was very much tied into my title and how much money I was making and, you know, the prestige of my work and all of these sorts of things, how connected they were to within the community and within my workplace. And, um, you know, I came to realize that wasn’t the same as actually having real connection, you know, having a title, having wealth is not the same as having real connection with other people and really all I ever wanted was that connection with other people in the first place. The way that the title was benefiting me was that I felt like it made me more respectable and that it made me more connected, but the reality was that it was actually a setback. It prevented me from building deeper connections with people that I cared about. When I stepped away from that career and I started to really…

Whitney (14:55)
Mm-hmm.

Ken Dunn (15:05)
invest myself in relationships with other people, the relationships got much better pretty quickly and they continued to get better. That’s not to say that I’m like perfect at having relationships because I’m not. I’m still a work in progress like everybody else but certainly making a lot of strides in that area of developing better relationships.

Whitney (15:25)
Thank you for sharing that. Again, I don’t think that’s an area that enough attention is put towards. I know that with COVID, work from home, work flexibilities, there was a little bit more of a movement there where the employee was taking back some of that say. But I think even if maybe you work from home a little bit more, there’s still this pressure to have the title, the impressive resume, pay, things like that to…dictate your worth. So I’m sure that your story is gonna resonate with quite a few people out there. So thank you for sharing it. And so there’s video games, there’s work, there’s alcohol. What other life experiences do you like to support people as they go through them?

Ken Dunn (16:05)
Absolutely.

Right. Yeah, thanks for asking that question. So, you know, my own experience involved a lot of anxiety, a lot of depression. And I had a lot of dysfunctional behaviors. You know, I had mentioned that I was really struggling with relationships. So, you know, I didn’t have my own direction. I had a lot of codependent relationships, a lot of dysfunctional relationships. And so those things, I think, are areas where I can really support somebody. You know, there is the substance abuse angle or substance use angle, excuse me. Um, substance use angle. I mean, I, alcohol was my drug of choice and I certainly used it to avoid a lot of things and also to thinking that I was having fun when I really was just isolating. Um, so those are, those are a couple of areas. Um, I’m drawing a blank at the moment as to what other areas, um, I mean, there’s a lot I feel like.

Whitney (17:12)
That’s okay.

Ken Dunn (17:16)
All of the experiences that I’ve had, I see an element of mental health experience there that where my mental health wasn’t what it could have been. And so I think that’s another area where I can really provide somebody with some support.

Whitney (17:33)
That’s wonderful. And is there anything else about your style? I know that you mentioned ACA, a Buddhist-based program, some 12-step experience, you certainly do activities. Anything else about your style that would be important for someone to know?

Ken Dunn (17:49)
Sure. Well, I’m a strong believer in the fact that we all actually know deep down inside what’s best for us. And we might struggle at times to actually trust ourselves to gain access to that or to just trust whatever that wisdom is. So, like I said, I’m a strong believer in trying to set up a scenario where a person can trust in themselves and believe their own wisdom and try it out. Create a space where an individual can feel like it’s safe to try trusting themselves, try something new, build some goals and see how it goes. And if it doesn’t go well, come back and let’s talk about it and try out a new goal. So I’m really focused on agency, people having their own direction and guiding their own recovery, their own healing journey. Also, the multi-pathways approach is really important to me. I think it’s really important that each person feel like their recovery is their recovery and that they are able to find the things that match for them. And I can’t tell a person what’s right for them. They have to do it themselves. I can give them some ideas, some suggestions, here are some things to try, here are things that worked for me, things that didn’t work for me. So, kind of set up a little bit of a framework. But ultimately, individually, we all have to figure out what’s the right approach for us. So the other thing that I like to incorporate is mindfulness. It’s been a really important part of my journey. And I, you know, prior to me starting a regular meditation practice and really investigating mindfulness, I really didn’t have good access to my emotions. I really didn’t know what was going on inside me, both physically and emotionally. And… I trusted my brain entirely too much. And so, um, having gone through this practice, going through this journey, I see the value in it. That’s not to say that it’s like, gotta be an important part of every one of my peers practices, but I, but I do like to encourage a little bit of like, what does it feel like right now? You know, just pay attention to what’s going on, what’s happening inside your body and mind right now, and they can share it or not, you know, it doesn’t have to be something that we talk about, but, but just pay attention.

Whitney (20:09)
And that’s such a powerful inner tool that you can carry with you anywhere you go, kind of relating back to that person finding their pathway. Whenever you can practice some mindfulness, you can really take that control of yourself to a whole new level.

Ken Dunn (20:29)
Absolutely. Yeah, you can practice mindfulness anywhere, whether it’s in traffic in the car or at the line at the grocery store or whether you’re sitting on a cushion doing a formal meditation practice at work. It doesn’t matter. You can always practice mindfulness.

Whitney (20:44)
Wonderful. And so as we get to the end here, I wanna ask you our two kind of wrap up questions. The first is, we know stigma is rampant with substances, with processes, with everything and anything at this point. If you could say one thing to challenge stigma, whether a specific type of stigma or in general, what would you like to say?

Ken Dunn (21:09)
Well, that’s a really good question. How much time do I have?

Whitney (21:12)
Yeah, right? I know. You can have as much time as you’d like.

Ken Dunn (21:15)
Okay, well, I’ve got a prop here actually.

You know what that is, it’s an apple. What color is it?

Whitney (21:21)
Mm-hmm. Red.

Ken Dunn (21:24)
red, right? That’s what almost everybody would say. However, I cut it open. What color is it?

Whitney (21:34)
Like a yellowy white.

Ken Dunn (21:35)
Yellowy white, right? So that on the outside, that thin little bit, that’s just the skin. And when people see those of us who are either in the middle of our substance use journey or whether we’re in the middle of our mental health challenges, all they see is this, that little bit on the outside. And as they say, it’s only skin deep. So down inside there, that’s where all the juice is. That’s the important stuff. That’s where the heart of us is. And if we’re only ever looking at the outside, we’re only going to see the defenses. We’re only going to see the challenges that a person has presented. We’re not going to see what’s inside their heart. So, um, and I think this goes beyond simply a stigma regarding, uh, substance use or mental health issues, but I think it’s a pretty good analogy in this area as well. There’s a lot more than just what you see on the outside.

Whitney (22:27)
I love that was amazing. I was not prepared for a prop and that was incredible.

Ken Dunn (22:32)
Hahaha!

Whitney (22:35)
And I’m excited to hear what you have to say for this next part too. Um, then, so there’s going to be someone who listens to this or watches it and they’re struggling, they’re in that place where they may need some support. What would you like them to hear?

Ken Dunn (22:38)
Hahaha!

I mean, I think the most important thing for a person to hear, I think it’s kind of two parts. One is that, you know, as much as we are all unique, we’re not unique. You know, there’s this ideal of terminal sickness or terminal uniqueness. Thank you. I needed that little bit of help. Yeah, I mean, we have this common humanity, right? We’ve all got these struggles.

Whitney (23:09)
Oh, uniqueness.

Ken Dunn (23:19)
And the things that I have done are not unlike things that other people have done. So it’s not the end of the world. You know, there, there is some life to come beyond this. I think that’s a really important thing to remember. And the other thing is you don’t have to do it alone. You know, a big part of my challenge was letting people help. And once I let people help, once I let people in, things got a hell of a lot easier, really fast when I realized, Oh, I don’t have to carry this all alone. Even if it’s as simple as just sharing my thoughts and feelings with somebody else. The relief that comes along with that to be genuinely authentic to another person and to be able to allow myself to be myself was just a game changer, a life changer for me. So I hope others can embrace that as well.

Whitney (24:06)
Wonderful. Well, Ken, I can’t thank you enough for taking the time to speak with me today and sharing your journey and all the work that you’re up to, as well as what I’m still, I can’t get over what an amazing response to addressing stigma.

Ken Dunn (24:26)
Thanks Whitney, it’s been really great to be here with you. Thanks for entertaining me while I play with my fruit. It’s been a good experience.

Whitney (24:33)
Anytime, anytime. Yeah. Well if you are interested in working with Ken, visit straightupcare.com forward slash members. And on behalf of straight up care, thank you for joining us.

Ken Dunn, Recovery Coach and Chief Joy Facilitator | Meet The Peer Joy and the recovery journey aren’t usually synonymous, but if Ken Dunn, Chief Joy Facilitator has his way, that won’t be the case for much longer. With an emphasis on the importance of joy and play when pursuing a goal, learning something new, […]

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RL Kramer with a picture of his book Hocus Focus. Book addresses growing up with ADD/ADHD and its medications

Medication-Arrested Development: The Impact Of Growing Up Taking ADD (ADHD) Medications

Posted on May 10, 2024July 18, 2024by

Whitney

RL Kramer, Hocus Focus: Coming of age with ADD and its medications | Recovery Conversations

ADD/ADHD has received a lot of attention in recent years for the over-prescribing of medications. In fact, the US is experiencing a nation-wide shortage of medications used to treat ADD/ADHD. While the diagnosis has been in existence since the 1960s, albeit under a different name, the prevalence of ADD (now known as ADHD) and its medications surged in the 1990s among elementary-aged children. As a result, we’re now able to gain insight into the impact of childhood medications on personal development and adulthood.

In this episode of Reduce The Stigma – Recovery Conversations, RL Kramer, author of Hocus Focus: Coming of age with ADD and its medications, Kramer shares his experiencing growing up with prescribed medications, starting at the young age of seven years old. Kramer’s story will have you rethinking our quick acceptance of recommended medications. A supporter of everyone doing what’s best for them, his message is that we all be more informed and aware of the potential consequences of medications, particularly amphetamines.

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Are you someone who has been diagnosed with ADHD or identifies as being neurodivergent? Here are two peer specialists ready to support you using shared lived experience. Or, find a peer for other lived experiences: straightupcare.com

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Whitney Menarcheck | she/her (00:00)
The 1990s saw a surge in young children, particularly boys, being diagnosed with ADD, which we now know as ADHD. Many of these kiddos were prescribed amphetamines. But what does that mean for their development and for who they are today as adults? Stay tuned to hear the conversation with R. L. Kramer, the author of Hocus Pocus, Coming of Age with ADD and its Medicines. And you’re ready to be inspired as we reduce the stigma.

Whitney Menarcheck | she/her (01:40)
Hello and welcome to Recovery Conversations. Today’s conversation is with R .L. Kramer, the author of Hocus Focus, Coming of Age with ADD and its Medications. R .L., thank you so much for joining me today. I just finished your book the other day and it was a really great read.

R.L. Kramer (01:54)
Thank you.

Whitney Menarcheck | she/her (02:02)
a perspective that I haven’t heard before. And so I’d like to start with, if you could just set the stage for anyone who isn’t familiar with your book yet, what is your story about? What was Hocus Focus, the purpose of writing it?

R.L. Kramer (02:19)
So I started writing the book when I was about 23, 24 years old and I was withdrawing from Adderall, which I had been taking in some shape or form since I was a child. When I was seven years old, I was diagnosed ADD. And it’s an important distinction. I’ve gotten some comments about the title that it says ADD and not ADHD. And there’s a semantic battle sort of going on with ADD versus ADHD. And I was diagnosed ADD, so that’s why I use that term. But…

I was given amphetamines when I was seven years old in the form of dexedrine. And I took that on and off until about seventh grade. And then I was off dexedrine until I was 15 years old when I was introduced to Adderall. And I took Adderall intermittently until the age of 23 or 24. And when I was withdrawing from Adderall, I kind of chose to take a look at this whole phenomenon by way of examining my own experience to examine.

the cultural experience of taking amphetamines and the history of amphetamines as they relate to our culture and ADD and my own personal journey of learning how to focus and manage what was diagnosed as ADHD without the use of amphetamines.

Whitney Menarcheck | she/her (03:36)
And you know, it’s said so easily as part of your story, but I think we need to highlight seven years old, you were prescribed with medications. That’s just so young at such a vulnerable developmental age, the brain is nowhere near finishing its development. And so I just want to make sure everyone heard that.

R.L. Kramer (03:47)
Yes.

Whitney Menarcheck | she/her (04:03)
um it’s just i think about that little boy right

R.L. Kramer (04:05)
Yeah, I was a small child. And I think what was interesting is I was the youngest person in my class. I was a late birthday kid. You know how there’s always a kid who’s nine to like 11 months younger than the rest of the students. I was one of those kids. And at the time of diagnosing, I’ve seen some statistic that I can’t pull up accurately, but somewhere above majority kids who are diagnosed are often in that bracket because that developmentally.

nine months for children is significant.

Whitney Menarcheck | she/her (04:36)
Right, and they’re being compared to their classroom peers who are developmentally advanced compared to them. Right, but if you look at them at their age and their developmental age, then they’re right on track. But it’s just that comparison that can be kind of the thing that puts the spotlight on the kiddo.

R.L. Kramer (04:41)
Mm -hmm.

Yeah, sometimes a whole year.

Yeah. Yeah. And it’s important to point out too, that my experience is totally anecdotal. You know, some people, they have different experiences, but for me, the medication did sidetrack me, I think, in retrospect, but I did like them.

Whitney Menarcheck | she/her (05:13)
And I think if we can talk about that a little bit more because I know that at one point in your book you wrote about how you’ll never know what the medication could take away. You also don’t know what it could it gave to you and talk and you talk about that.

reflection in processing what it could have been like developing without the medication. What do you see as something that really stands out to you as part of your growing up that was impacted by the presence of the medication?

R.L. Kramer (05:47)
positively or negatively.

Whitney Menarcheck | she/her (05:49)
wherever you’d like to go.

R.L. Kramer (05:51)
Okay, well, the medication to kind of reduce it down, what I think the medication does for did for me and does for a lot of people is it biochemically gets me going and gets me motivated and gets me completing tasks, more or less effortlessly, without having to surpass this barrier of discomfort or motivation or whatever it is that’s keeping me from working. The medication acts as what I considered like

a neurological prosthetic that would function, that would get my executive function in motion. So then without that prosthetic, my ability to regulate my own executive function was totally depleted in withdrawal. So then you become obviously dependent on this mechanism to get you going. But in terms of some things, I mean, I think it’s, it’s really hard to pinpoint, but I did develop my brain, you know, I blazed neural pathways as a young person.

on amphetamines. And yeah, sometimes I think like pattern recognition or certain approaches to tasks and highly detailed. Sometimes I think maybe that was taking all the amphetamine, but like the book says, there’s no control group on the study of the individual of myself without a twin who had all my experience and stuff like that.

And so sometimes I wonder if I have those advantages almost like sometimes traumatic experience can strengthen us, but we still kind of are not super stoked that it happened.

Whitney Menarcheck | she/her (07:25)
Right, right. If we could have, we would have stopped it, but then we also recognize that there’s a developmental impact that, you know, we can take some good things away from it. And, you know, I don’t, as I was reading your book, I found myself thinking about that we don’t.

think about the long term impact of a medication. Yes, we think about side effects if it’s effectively communicated to us. Maybe we do our own research and we may think about like the physical long term effects. So high blood pressure, you know, something like that.

But I’m curious how common it is for people to really think about the personality and coping skills development, particularly for individuals who are prescribed a medication at a young age as they are growing up and going through those processes. And it sounds like there is an impact, positive and negative, on who the person becomes and then the skills that they may feel they lack as a result of.

R.L. Kramer (08:33)
Yeah, and I think it’s really close to impossible to measure because it’s so complex and so nuanced and so down to such significant details that for me didn’t really reveal themselves clearly until I was in withdrawal and I realized how much, how many things were dependent on it and also certain elements, for example, when it came to like dating and connecting with people intimately.

after a long time of Adderall, it really started to change the way I interacted with people. And it made me very difficult to, I think, form deep connections with others. And it was very clear that like, when I stopped taking it, I wasn’t effective at work, but people were connecting with me. It’s almost like what I told myself a lot was that it was, if I imagined that I had a finite amount of human energy, you know, 100 units, for example, that on Adderall,

abundance of those units went to my brain. I was very brain centric. I would come into a social situation using my brain. How can I adapt to this situation and be likable or charismatic or make this person want to talk to me? Whereas, you know, now normally it’s I’m listening, I’m just here, it’s in the heart. So I think it depleted my heart a little bit, not to be a woo woo, but

Whitney Menarcheck | she/her (09:56)
No, I mean, I think that’s a great way to explain it because, you know, it’s like…

fight or flight, we go to the resources of our brain, right, and our essential organs. And it sounds like that’s almost what Adderall was doing to you as well, where you were in that place of almost authenticity and genuine connection because everything was taking you to that analytical level and brain first. Yeah.

R.L. Kramer (10:14)
Hmm.

Mm -hmm. Yeah, and I think part of my healing, my addiction to add it all was learning how to relax that analytical part of myself.

Whitney Menarcheck | she/her (10:38)
How did you go about that?

R.L. Kramer (10:44)
To be completely honest, I had a big reckoning with it in the midst of an ayahuasca ceremony. So, you know, I know that a lot of the talk on this show I’ve listened is about complete sobriety and I don’t know how people would feel about psychedelics for improving or almost as a further therapeutic sense.

Whitney Menarcheck | she/her (11:04)
We’re all about whatever is best for the person.

R.L. Kramer (11:07)
Okay, yeah, I mean, there was one one particular instance on with that substance, where I was really confronted with a representation of the analytical mind. And it’s, they’re silly in retrospect and talking about these things. But I was sort of trapped. And it’s kind of everybody’s biggest fear when it comes to psychedelics that something’s going to flip in their mind and not really stop. And it really pushed me into that analytical part. Like, I think,

that that medicine can take you to the parts of yourself that you try to suppress and really make you look them right in the eye. And I was really battling with analyzing the ceremony and like what was going on there. And I was trying to ask myself, there’s like another part of me that’s like, I don’t want to do this. Can we stop the analysis and explanation and just be here? And it kind of led me to this insight that really stuck with me is that, does it make you feel

good to be right? Or does explaining things help you feel safe when you can’t let go and into the unknown? And just accept that I can’t know everything, I can’t name everything. And that explaining things in the long run doesn’t always make me happy. And that maybe I can let go a little bit and just just hang around and be here and be ordinary.

Whitney Menarcheck | she/her (12:31)
That’s beautiful to think of, that acceptance of letting go of some control almost. Yeah.

R.L. Kramer (12:40)
Yeah, and giving yourself some trust in something other than your brain.

Whitney Menarcheck | she/her (12:45)
That’s hard. It is really hard. I’m just thinking about that just personally if I had to. That’s that stuff that that’s not a natural process, especially when. Society really pushes us to think primarily with our brain and and not to touch or tap into those other sources of knowledge within us.

R.L. Kramer (12:46)
Yes.

Mm -hmm.

Yeah, yeah, and a lot of the medicines that we prescribe, I think, you know, as a culture, are encouraging of that, you know, because I probably, as a child, was very emotionally driven, you know, by impulse and feelings and what I wanted and what I thought and what I wanted to say. And that’s not conducive to a behaviorless pedagogy.

Whitney Menarcheck | she/her (13:40)
Right. And kind of going back to that child, I couldn’t help but think about, you know, who was…

You think about medication. Medication is prescribed to fix something. I’m saying that in quotes. Or, you know, there’s a problem and it’s a solution or because someone’s suffering in some sort of pain. And reflecting on your story and your presentation of it, I couldn’t help but think, well, who was actually suffering? It didn’t seem to be seven year old you. It seemed to be the adults.

that then took your energy that maybe was a little bit more than they were used to and then put you force you to better meet their needs in the classroom or where have you.

R.L. Kramer (14:29)
No, absolutely. At that time, it seemed to be for the convenience of my mom and my teacher. But, you know, I take responsibility and accountability for enjoying the medicine and then later in life.

Whitney Menarcheck | she/her (14:44)
So let’s talk about that because you do share that there became a time when you started to enjoy it and were using it different than as it was prescribed. And what are your thoughts on any role, if there was one, of being prescribed the medication early on than to you using it more the way that you wanted to rather than as prescribed?

R.L. Kramer (15:14)
Well, I didn’t really ever take it. I never like went on benders or anything like that. It was more or less staying well within the window of prescription with a couple of times where I had like a few, a few like two or three day experience where I didn’t get much sleep, but mostly I did stick to my prescription regimen and I did enjoy it. You know, I was prescribed 20 milligrams of time release Adderall in the morning and I was given the option to take five or 10 milligrams of the salt in the afternoon.

And even when I was 15, I sort of was really slacking off in school on purpose and medication was kind of a punishment for that. So I was really groggy and I really didn’t want to get back on the medication. But the, you know, and I was kind of forced to, and the first time I took it, I went to school and I was really pepped up and I was a really effective student. And then after school, when I was skateboarding, I had an aptitude on skateboarding that I had never had before.

you know, and I had this connection with my body that totally made me be like, okay, I’m on board. I like this. And the, something that happens that I see a lot because we’re experiencing a wave on social media, I’m sure you’re seeing of mostly young women, young men as well, but a lot of young women who think, who are saying that they were missed because, um, in, in the nineties and early aunts, it was the targeting of ADHD diagnosis was angled toward young boys.

So, and a lot of these people though, who are coming out and creating social media accounts based on their ADHD, they often are saying, I feel like this is who I always am and who I’ve always been. And I kind of, I have feelings about that because I felt that way too. But then I, after, you know, 16 years, I think that must, that’s kind of a delusion. And that’s one of the most, you know, my retrospective perspective without taking it. I’m like, that’s so dangerous.

because now you are immediately handing your identity over to a substance. And it’s so, I think the reason your podcast stood out to me is because it’s a stigma. A lot of people are saying, stop the stigma around medication. And I’m thinking, well, maybe it should be a little stigmatized. Maybe we should be really careful about this because you’re giving a lot of yourself away. And it takes…

It takes over you like any other addiction, not to go too ahead, but once I was withdrawing, I was like, this is a drug addiction. I’m in a drug withdrawal. I had not even realized it because you have a support system. The people who care about you most, your parents, your doctors, your teachers, and later in life, your employers, they all will start to prefer the version of you on these medication. So it’s very different from other.

substance addictions or dependences in that it actually makes you sometimes a better member of society.

Whitney Menarcheck | she/her (18:21)
A little bit more compliant sometimes.

R.L. Kramer (18:24)
Oh for sure. You know, I had the oppositional defiance thing going on big time.

Whitney Menarcheck | she/her (18:29)
Which is a fascinating thing to me that someone can be.

prescribed medication that truly helps to wind them down in many ways. I know for you, it really kind of revved you up though. And then an oppositional defiant disorder, I don’t know. You’re the second person this week I talked to who was prescribed amphetamines at a young age and then received an ODD diagnosis as well. And oh, oh, oh, I apologize.

R.L. Kramer (18:42)
Later.

I wasn’t diagnosed with ODD. I just know that that’s typically kind of in the umbrella of ADHD. And I was like anti -authoritarian.

Whitney Menarcheck | she/her (19:04)
Yeah, well.

And I would, again, you said there’s no way to know based off of because it’s one person, one life. But I had also would love if we could get in time machine to see if those moments were when maybe you, the medication wasn’t in your system. Because I know you mentioned that whenever you weren’t on the medication, things like came to the surface. It was like you were finally like experiencing certain things that you hadn’t whenever the medication was in your system.

R.L. Kramer (19:35)
Yeah, when I was a child.

Whitney Menarcheck | she/her (19:36)
Yeah. And so it’s like, okay, were you defiant or were you figuring it out because it had been kind of subdued, medically subdued?

R.L. Kramer (19:45)
Yeah, and there’s something in a clinical term I think it’s called the rebound effect when it comes to ADHD medication. So you end up being more, displaying more ADHD behaviors than you had prior to beginning medication. There’s a bounce back effect.

Whitney Menarcheck | she/her (20:01)
Right. Right. And that goes back to the not building those coping skills because you had the medication doing it for you.

R.L. Kramer (20:10)
Yeah, yeah. So for me, I think it really prolonged a certain part of my development as a person. And I mean, that’s beneficial because then I identified that when I was in my twenties and I was like, all right, let’s, let’s pretend I’m a little kid and I need to learn how to work hard and be disciplined.

Whitney Menarcheck | she/her (20:26)
Yeah, which is, that’s not an easy thing to do, especially whenever you’re at an age when people expect a different level of maturity and certain behaviors. So then be processing and going through that to try and catch up in a way.

R.L. Kramer (20:46)
Oh no, it’s literally the opposite of easy. Because I was like, this is supposed to be hard. That was kind of the insight I was sticking with is like, I shouldn’t be breezing through any of this. I’m supposed to get uncomfortable, find resistance, not want to do something, and just keep my head down and do it.

Whitney Menarcheck | she/her (21:05)
I’m so glad you shared that. I think it’s interesting. That stood out to me in your book as well, because you wrote about, and clearly I’m a fan of your book because I can reference it and quote it pretty well, but you wrote about how you thought, okay, anytime there’s a challenge, okay, this is my deficit, therefore I don’t have to even try. And a lot of times people want to get out of those tough times.

R.L. Kramer (21:29)
Yeah.

Whitney Menarcheck | she/her (21:34)
And here you are saying there’s so much value in going and pushing through that it’s actually beneficial to feel that. It is at least what I took away. Is that resonating with what your message was?

R.L. Kramer (21:48)
Yeah, well, I just knew that that’s what I had to do because my throughout my academic childhood, I did feel like I kind of holstered this excuse like anytime I stumbled like, well, you know, I have a learning disability. So this makes sense that I would struggle with this. And I think also when I was in the withdrawal, I was so in the pits. I was so bad. I was like, you know, I’m going to feel like like crap. If I sit around here, I don’t feel like crap. If I get out,

and try to get a job anyways. So if I’m gonna feel like crap either way, might as well push myself.

Which I feel like is in the ADHD community kind of goes along with this, this advice we’re not supposed to give. Cause people are like, Oh, you can’t just say, work harder, try. That’s what I did.

Whitney Menarcheck | she/her (22:37)
Yeah. Yeah. Why? Why? I’m curious. Why can’t you say those things? Or why shouldn’t you say those things?

R.L. Kramer (22:45)
I don’t know. I think it’s really weird because, you know, I’ve promoted this book to try to, you know, I don’t have a internet cloud. I don’t have anything. I just worked really hard on writing for the past decade, but because of my participation in the online ADHD conversation, my feed is totally saturated with ADHD influencers who do this for a living. So I see these patterns and I recognize most of the people who are

talking about ADHD are on meds and promoting meds. And the conversation about ADHD is central to meds because there was no ADHD before there were meds. So I know it’s a big part of the conversation and I think a lot of that, that sometimes when I see ADHD tips online, I wonder are these ADHD tips or are these daily amphetamine use tips? I’m not trying to be a jerk or stigmatize you for taking meds, but a lot of the tips you’re giving,

remind me of things, habits I would need to keep track of on meds. For example, remember to eat, remember to drink, you know, because you’re so focused and your metabolism is so, you know, just on that you would forget to eat or drink because you’re you have an external source of energy. So like when I see tips like that for ADD, I’m like, well, I don’t know. And I don’t know why people say they just get mad when you bring up getting a planner or

work trying harder. And I guess you can’t just tell someone who has an executive function problem to do harder. They have to, that’s, that is rude and it can be dismissive of their struggles.

So I understand that, but that is what helped me and to use a planner.

Whitney Menarcheck | she/her (24:32)
As I have one right next to me, I think it makes me think about, you know, mental health and substance use recovery that there’s no one pathway. There’s also no one pathway for someone who has ADHD. No two. I mean, it’s called neurodiversity. So, yeah, maybe the same or ADD as the diagnosis was back in the 90s. It may be under the same umbrella term, but each individual and what works for them is going to be different.

R.L. Kramer (25:02)
Yeah. Yeah. And I try to, I mean, I do kind of promote the med free approach. And I think people on meds sometimes feel attacked. And I’ve had to go on and say, it’s not my intention to tell people on meds they’re doing it wrong, but there are people who are trying to get off meds and what I’m providing is a valuable resource. And that’s what I want to speak to.

Whitney Menarcheck | she/her (25:28)
Absolutely, because meds aren’t going to work for everyone or for whatever reason someone may not want them. And that’s okay.

R.L. Kramer (25:33)
Yeah, I mean, the thing, I never thought they didn’t work for me though. You know, I get that. Yeah, and I gotta be honest, I didn’t choose to quit. You know, you read my story, so you know that my insurance didn’t work, things fell through. I just, I couldn’t access the meds and I actually was totally fiending. I was paying people on the street for five ants and stuff like that. So I didn’t willingly choose to quit them.

Whitney Menarcheck | she/her (25:39)
That’s right, because you said you liked how you felt on them and you found them.

R.L. Kramer (26:02)
But at a certain point I just said, all right, I’m going to figure this out. And I think they’re very, it’s very hard to turn your back on them once it’s part of who you are.

Whitney Menarcheck | she/her (26:12)
Right. I mean, you built a life with them being present. And if you like how you’re feeling, yeah, right. Why would you? And…

You know, we talk a lot about like, there’s been so much attention on opioids and doctors prescribing opioids and then the prescriptions getting cut off. But let’s also think about individuals, especially at that young adult age when they’re transitioning insurance and things like that, who could be on medication and then have it ripped away. And then we have a problem maybe with how they cope with that situation.

R.L. Kramer (26:46)
Oh yeah. And I understand why opiates are, they get more attention because the, there’s more at stake when it comes to their consequences in the body. You know, people, people are losing their lives more often with opiates and Adderalline amphetamine, it doesn’t have that reputation, but it does modify a person’s personality, I think.

Whitney Menarcheck | she/her (27:10)
Right, absolutely. And can lead to, you know, just a more of a willingness maybe to engage in other, I think you put it as mind altering, not just mind altering substances, but mind altering experiences.

R.L. Kramer (27:27)
Yeah, and when it came to substances, I think that Adderall or amphetamine was my gateway drug. You know, later in college and stuff, when someone offered me to experiment with a substance, I was always unafraid of trying something because I was so familiar with the idea of taking something to feel differently.

Whitney Menarcheck | she/her (27:46)
Yeah. And, you know, and love us to start to talk about that life post -medication for anyone who may be interested, particularly, you know, someone who’s been prescribed and found the means as you had been. What are the ways that you were able to fill the needs that you had? So coping skills, you develop routines, practices, what has been essential to you to tend to your yourself?

R.L. Kramer (28:16)
Well, when I stopped, I tried a lot of stuff, you know, and I think that was key is just to Google everything and give it a go and see how you feel and be open to seeing what fits because it’s so unique. It’s not a one size fits all the way medication is prescribed. So for me, what kind of is definitely a keystone is exercise. It’s very simple. But when I was first withdrawing, I forced myself to run.

And that helps because at least in the, you know, I, and I was always questioning, am I dealing with my ADD, my latent dormant ADHD that’s been waiting for me? Or am I dealing with amphetamine withdrawal? Either way, what works for that? And so exercise really helps because it does bring in those chemicals that you want, that dopamine, that serotonin, but it also, it trains, it trained me to do something I don’t want to do for a reward that is deserved and not.

simple to achieve. So just by running or lifting weights or doing yoga or riding a bike, just being physical in my body helps me get in my body and slow down.

and relax. And I think a big part was training that delayed gratification, like training delayed gratification.

Whitney Menarcheck | she/her (29:36)
Can you expand on that? What do you mean by training the delayed gratification?

R.L. Kramer (29:42)
I think just where on the medication, I was always doing things that felt good in the moment, even creative acts, you know, doing art or music just felt good at the time. And I wasn’t really putting down things for long, for later reward. Everything I was doing was for now. And by delayed gratification, I mean practicing guitar instead of playing it. Maybe for example, just that intention that I’m practicing.

I’m not playing. And projects that wouldn’t be done in an evening. Usually if I started a project on Adderall, I had to finish it before the day ended or else it would just fall to the wayside. So showing up to the same project every day. And in my withdrawal, I did this by learning how to play Clare de Lune.

on the piano.

Whitney Menarcheck | she/her (30:32)
with that is that is it an instrument?

R.L. Kramer (30:36)
Claire de Lune, it’s a piano piece.

Whitney Menarcheck | she/her (30:38)
Oh, oh, wonderful.

R.L. Kramer (30:40)
is a chapter in the book.

Whitney Menarcheck | she/her (30:41)
Okay, well that one I forgot. We’re gonna call me out on that.

R.L. Kramer (30:42)
No worries. Yeah, but just I showed up every day to learn this song and instead of something long, so an exercise regimen too, it’s something that you don’t get reward for the first time you exercise, but after going every day, every other day for a long period of time, you notice changes in your body, your strength, your flexibility, whatever. So having, and then the work I do now, which is like construction and carpentry, you know, it’s…

You show up every day and you work a little bit, I guess.

Whitney Menarcheck | she/her (31:14)
Yeah, you definitely can’t do many big projects in one day.

R.L. Kramer (31:18)
No. And there’s something too, I talk about in the last chapter about the Purae Ternis. You remember that one? And I think that a shift from pleasure to satisfaction, and that I think is just essential with maturity, is, you know, that when I complete a construction project, it’s not necessarily pleasurable, but it’s very satisfying. And I guess that also comes with sort of a sacrifice.

of my own desires and for pleasure.

Whitney Menarcheck | she/her (31:53)
Isn’t that a different type of pleasure? Being satisfied?

R.L. Kramer (31:57)
Mm hmm. Totally different. But for me, that was kind of a shift that was important. And that’s why I highlight in the subtitle of the book, though, the coming of age with ADD. Because some of it’s just growing up. But I grew up with this experience.

Whitney Menarcheck | she/her (32:13)
Yeah. And I’m curious, I would love to know, part of your story is a film that you were working on and it was really externally focused. And you said, I’m focusing on telling other people’s stories and why not mine? Or, you know, like I didn’t want to tell mine. You now are telling yours. What led you to start sharing your story?

R.L. Kramer (32:39)
Hmm. I started doing it. Um, I, well, when I started writing my book, I was writing a research memoir. So I was still doing that kind of ego led humility thing where I would be like, so getting over that, I think too, has been part of it. Cause I would try to be like, I want to be in the background. I’m not really going to do it. And because I’m so modest or humble and really that’s, that’s like a, a loop, you know, cause it’s actually.

egoic to try not, I don’t know, this is a different conversation, but yeah. So I was writing this book that was half research, half memoir. And I was sharing it with some other writing people and they’re like, just tell your story. Just there’s enough in that. And the through line of your truth will show people this thing. So I just, the writing process, I think helped me get over that. And I am writing a book now.

Whitney Menarcheck | she/her (33:12)
All of you, yeah?

R.L. Kramer (33:39)
that is the guide for unmedicated ADHD where I’m not really a part of the story.

Whitney Menarcheck | she/her (33:43)
excited to read that. So I’ll have to sign up for your newsletter or whatever notification I can get. That’s really exciting. And as we wind down, I’d love to ask you, and there’s a lot of very valuable things you’ve shared, but if there’s one thing people take away from our discussion, what would you like it to be?

R.L. Kramer (34:05)
I think that people should be more apprehensive before they listen to psychiatrists to be honest. I think that they see sometimes our struggle or our deficiencies in our own development as an opportunity to commodify. I have a lot of mistrust from them and I’m working through that as a person, but I do know people in my life who’ve lost their lives because of…

pharmaceutical medications and there’s no real recourse for it. And I just think that they treat symptoms and not sources. So, you know, I don’t want to tell people not to take a medication when they need it. But I just think that we should be a little more apprehensive and understand that the person who has the ultimate agency when it comes to ourselves is ourselves. So,

There are doctors and there are professionals who can advise us, but ultimately we have to figure out what’s right for us and who we should listen to in that regard. And just be careful because taking medication like that is not a light thing. At least amphetamines are the eighth most addictive substance in our world. So when you take it, you sort of sign a contract and it’s just a big decision.

Whitney Menarcheck | she/her (35:26)
Yeah. Thank you for sharing that. And for those who are interested in connecting with you, maybe finding your book, how can they reach out to you or where can they find it?

R.L. Kramer (35:40)
The book is available everywhere books are sold online. You know, Amazon and stuff like that. I have a website that’s RLKramer .us R L K R A M E R I have a lot of videos on YouTube where I talk about adderall and withdraw and stuff like that. And that’s RL Kramer and those links you can find on my website. And I’ll be at the Gaithersburg Book Fair on May 18th.

Whitney Menarcheck | she/her (36:06)
Well, I will make sure that we include all of your links in the show notes and in any posts so that people can connect with you and continue learning from you. Thank you so much, Arielle, for sharing your story, for taking a different approach and really just finding your pathway through it. I think that’s the thing that we all look for is to be us. And it sounds like you figured that out.

R.L. Kramer (36:33)
constantly, constantly shifting and changing. And I think that’s, that’s the trick too, is to that the ultimate, like I wanted to say when you’re asking, sorry to add on too much, when you’re asking about what I do, it’s I think it’s a constant progression that there’s no swish that’s been flipped. And ultimately growing as a person heals that my whatever ADD struggle I had and managing my stress and learning how to grow like that has been the most beneficial thing.

Whitney Menarcheck | she/her (36:43)
No, please.

Well, that’s wonderful. And I look forward to being an observer through your social media and your books as you continue to evolve as yourself. And for all of you who are listening, check out R .L. Kramer’s website, book, definitely on YouTube, and share with anyone who maybe this could resonate with.

Please be sure to pass this along because we want to keep getting stories out there and continue reducing the stigma. Thank you.

RL Kramer, Hocus Focus: Coming of age with ADD and its medications | Recovery Conversations ADD/ADHD has received a lot of attention in recent years for the over-prescribing of medications. In fact, the US is experiencing a nation-wide shortage of medications used to treat ADD/ADHD. While the diagnosis has been in existence since the 1960s, […]

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Picture of a person coming out of a book to represent stories with multiple speech bubbles around them and broken chains to represent breaking down stigma

Powerful Stories: How Hearing Others’ Lived Experience Breaks Down Stigma and Elicits Empathy

Posted on May 8, 2024July 18, 2024by

Whitney

The American Psychological Association defines stigma as “The negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency. A stigma implies social disapproval and can lead unfairly to discrimination against and exclusion of the individual.”

The “negative social attitude” – what happens when we have that mindset? Are we being nonjudgmental? Are we hearing the person’s truth without our own opinion chiming in? No, we’re making assumptions and putting the person into a category, a column. We lose the individual and instead see the negatives we have been taught to associate with some component of that person.

And what is that component? It’s what we perceive as a “mental, physical, or social deficiency” – there’s something about them that isn’t good enough. Something about them that we are saying makes them less than, that they deserve less. For some it’s their race or ethnicity, For others, it’s a criminal record. In this article, we’ll focus on mental health and/or substance use disorders as the component that causes stigma.

Why Does Stigma Exist?

The Brain’s Classification System

One of our brain’s greatest survival skills is its ability to quickly assess a potential threat. Our brain would quickly assess the data available and make connections based on previous experiences and knowledge passed along, allowing the quick categorization of the data. While this is still a beneficial ability of our brains today, it’s impacted by the negative stereotypes, assumptions, discrimination, and outright lies that have filled our world. In other words, our brains are making these quick decisions and categorization using inaccurate, biased data. When we see a person, then, our brain is seeking things we can “connect” to our existing knowledge and quickly categorize them. We aren’t seeing the person, we’re seeing traits or characteristics that our brain then assigns a good or bad label to. We’ve lost view of who the truly is.

Fear

Another cause for stigma is a desire to keep something perceived as “bad” far away from us and those we love. Subconsciously we want to put distance between us and the “bad.” What better way to do that then to connect the “bad” to a component the person has? If they have that component and you don’t, then the “bad” is far from you, far from those you love. If I associate addiction with moral failing, then I can live without the fear that addiction will happen to me or someone I love because we would never do that. It’s far more scary and threatening to recognize that addiction can happen to anyone – including the people you love.

How to Break Down Stigma

Stigma dehumanizes a person; it takes all the positive qualities, all the things that make them who they are, and throws them aside. Thus, the only way to fight stigma is to humanize the individual(s). An effective way to do that is through increased contact, which can be a direct interaction or through the amplification of lived experience stories. By sharing lived experience stories, we emphasize the whole person – the things that you wouldn’t know through our brains analysis of “good” or “bad.” We all have a story, a set of experiences that led us to where and who we are today. By sharing stories, we humanize the person who has been stigmatized; we return to them the respect they deserve and should have never lost. Through the sharing of stories and raising of voices of those with lived experience, we elicit empathy and understanding.

Amidst the shadows of stigma and judgment, personal stories emerge as beacons of light, illuminating the human experience with authenticity and vulnerability. When individuals bravely share their stories, they invite others into their world, offering insights that challenge misconceptions and humanize their struggles. These narratives cultivate empathy, allowing listeners to walk in another’s shoes and see beyond the surface-level judgments.

Help Us Battle Stigma

Make a commitment today to raise up the voices of those with lived experience and hear their stories. Spread awareness of the human behind the mental health or substance use disorder diagnosis. Let’s humanize instead of stigmatize!

Get started today by listening to Reduce The Stigma, a podcast dedicated entirely to raising the voices of individuals with lived experience and the organizations supporting them.

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The American Psychological Association defines stigma as “The negative social attitude attached to a characteristic of an individual that may be regarded as a mental, physical, or social deficiency. A stigma implies social disapproval and can lead unfairly to discrimination against and exclusion of the individual.” The “negative social attitude” – what happens when we have that mindset? Are we […]

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Belinda Ennis on Meet The Peer discussing Recovery

Recovery Necessities: Safe and Brave Spaces

Posted on May 6, 2024July 18, 2024by

Whitney

Belinda Ennis, Peer in Training, Discusses Safe and Brave Spaces for Recovery | Meet The Peer

Recovery comes in many forms and following various diagnoses, life experiences, and hardships. In this episode of Meet The Peer, Belinda Ennis, a Peer In Training, shares her experiences with mental, physical, spiritual and emotional recovery. Belinda’s passion for the recovery community and the field is abundant, and you’ll have a hard time walking away without at least some desire to advocate for change. Through thoughtful comments and their lived experience, Belinda is championing necessary changes to care delivery, language, and the overall healthcare experience.

Connect with Belinda: https://straightupcare.com/members/belinda-ennis/

Catch the full episode to be captivated by Belinda’s enthusiasm for helping others and advocating for support for all, regardless of their backgrounds or beliefs.

Make sure you never miss an episode of Reduce The Stigma by subscribing on your preferred platform

Ways to Watch

Watch on any device on ReduceTheStigma.com

Install and Watch all Episodes on Reduce the Stigma RokuTV Channel

Install and Watch all Episodes on Reduce the Stigma Amazon Fire TV Channel

Ways to Listen

Our Podcast Website on Podops!

Listen on Apple Podcasts!

Listen on Spotify!

Listen on iHeart Radio!

Listen on YouTube Podcasts!

Follow Straight Up Care

Transcript

Whitney Menarcheck | she/her (00:00)
In the spotlight today is Belinda Ennis, a peer in training in Arkansas. Belinda's enthusiasm for the recovery community and empowering individuals is absolutely infectious. Sharing her own experiences with physical, mental, and behavioral needs, Belinda discusses everything from forced engagement and services, to the impact of language, to the need for safe and brave spaces. Stay tuned for Belinda's story and get ready to be inspired as we reduce the stigma.

Whitney Menarcheck | she/her (01:36)
Hello and welcome to Meet the Peer. With me today we have Belinda Ennis, a peer in training in Arkansas. Welcome Belinda.

Belinda Ennis (she/they) (01:44)
Hi there. Really nice to be here on the website today. Excited to do this interview.

Whitney Menarcheck | she/her (01:50)
I'm so excited to talk to you and I kind of want to start by asking about a peer in training. I don't know. I'm not familiar with Arkansas. Can you tell me a little bit about the peer space in your state?

Belinda Ennis (she/they) (02:03)
Absolutely. So Arkansas is actually leading the nation when it comes to recovery success and success for the peers as well. We actually have a three tiered system where we have core peer specialist recovery support training and then it goes to advanced peer and then goes to supervisor, peer supervisor. And then from there it could go on to national peer But that's the system that we have in Arkansas. And the requirements are pretty tough whenever it comes to getting the state certification. So I have 500 hours that I need to obtain providing peer services, and that can be worker volunteer. I have 46 continued education hours I need to get. There's 25 peer supervision hours that I work on with my peer supervisor. It's a very...well networked system, something that I've noticed so far is whenever I was going through and trying to find the right supervisor for me is the conversations I had with everyone was that there is so much support through the training for all of this and obtaining your requirements. So while it sounds really daunting at first, I don't have any doubt that I'm gonna be able to make it to the next level and then the next one.

Whitney Menarcheck | she/her (03:20)
Well, what a great reflection of the recovery community in general is just really working to lift one another up. That's what I'm hearing.

Belinda Ennis (she/they) (03:29)
Absolutely, it was really inspiring. Once I got my peer support training, I'm now certified to conduct peer services even though I'm not state certified as a peer yet. I am finding this community, like you were saying, that is vibrant and it's alive and people are interested and engaged. It's something that doesn't revolve around work, it doesn't revolve around home, it doesn't revolve around bars and third spaces that are not safe for me. I am really pleased to say that the more I come into contact with people in recovery, the more inspired I am and the more the fire gets lit under me, you know?

Whitney Menarcheck | she/her (04:10)
Absolutely, I feel the same exact way and I am the one who's so lucky to get to engage in these conversations with peers and learn about them and just, you know, we really are breaking down stigma just by sharing stories. That's the best way is to put a face to the experience. And so can you give us a little insight into what your lived experience is?

Belinda Ennis (she/they) (04:37)
Sure. I have lived experience as both a minor and adult with mental and physical health concerns, including substance use disorder, spinal trauma, TMJD, chronic pain, PCOS, neurodivergence, CPTSD, self -harm, eating disorders, insomnia, OCD, major depressive order, general anxiety disorder, and borderline personality traits. since undergoing many different types of mental health treatment centers, short and long -term recovery programs. Again, as both minor and an adult, I've been through homelessness, but my life has completely changed. The tone and cadence of my day -to -day is completely different. You know, I had burned all of my bridges. My relationships with people were not good, and I could no longer relate because my world was so removed, is what it felt like, and I was alienated and isolated.The biggest catalyst for my addictive tendencies to really take off were, it was whenever my grandma passed away. She was my best friend and she was like the only like non -toxic family member, especially when it came to authority that I had encountered. And I had zero idea how to deal with my grief at all. And so, you know, there was a lot of time and pain and struggle of. I don't want to be here anymore. And people, it felt like one were leaving my life because they couldn't talk to me about these issues. So I ended up in a situation where my family gave me an ultimatum and they used some of my younger family members as emotional collateral to say, you will go through this program. You will enter this faith -based 13 -month program or you're not gonna darken our doorstep again. And you know, it's a prime example of a lot of people's story in recovery where they don't have the ability to advocate for themselves. They're in a really tough situation, their circumstances, you know, everything seems like a catch -22. If I do this, it hurts me. If I do this, it hurts someone else. So that's something that I can really relate to. And I really, I wish that there had been support for me during that time because that program was so detrimental to my physical and mental well -being. We weren't allowed to talk about our past, and that's what they called it. You would get written up. You couldn't talk to your family. For 13 of the months that I went to that program, because I did graduate, I couldn't talk to my family, and those were the only people that we were allowed to have outside contact with. So I want to bring to light some of these experiences that I've had because there are a lot of people who have actually been through it and are almost forced into the shadows because they believe the experience is so singular that no one can relate. I'm here to say I can relate. I understand what it's like to have food and sleep restricted when it's held. I understand what it's like to be in recovery and be exploited for free labor because that's what some recovery programs do. There are places that aren't doing the right thing. Not that that's where I want the focus to be, but there should be acknowledgement in my mind. You know, and there was fatigue constantly from all the work that we were doing. But what haunts me is that, you know, people in recovery are taken advantage of and abused by multiple factions, you know, around the world every day. And so I want to provide a lot of support for that, you know, and the transition back into the real world, whether or not the program or treatment that you go through is, you know, abusive and right. Or, you know what I mean? There are a lot of folks that.just need some support. And so I definitely can, I could expand on for a while how hard it was to come back to the real world and not be able to have a lot of people to relate to. And so the turnaround point for me was definitely whenever I started to self -advocate and I started to search out relationships with my primary care physician.I had to find a good therapist. It's really hard. People don't talk about how hard it is to find a good therapist, but it is. It's one step at a time. It's how I do my best to take things now. I have ways to calm down my nervous system. My therapist is the reason that I started peer work. As I told her, I wanted to be able to talk more than once a week. I was like, I just have so many things I want to say you know, things I want to process with you. And she just said to me one day, she was like, have you thought about attending online support groups? Because she knows that that escape of the remote option is very important to me. If I become uncomfortable, I want that fight or flight. And so I started attending some peer support groups and doing these things that were, you know, what I wanted to do, because I realized that even though I had been in recovery for a while, I wasn't living life the way that I wanted to. And I was still

Whitney Menarcheck | she/her (09:23)
Oh yeah, right.

Belinda Ennis (she/they) (09:38)
You know, even though I was on the right medication for my depression and all these other things, there's still a missing piece. And I think that was purpose and peace in my home. And so I've been working really hard on that. You know, I saw those peer support specialists whenever I was in those online support groups. And I said, I want to do that because I know that I didn't even attend that many support groups during some of those really hard times in recovery. But....They were crucial. You know, it was a turning point that could have been really bad. Yes, yes, it definitely did. You know, I can say now that, you know, I'm living my dreams every day. I've worked in many different environments now. I've gained useful experiences. I found out what I'm passionate about, which is peer work. I began to build a really cozy home and garden that I never could have imagined. I have pets and a partner and friends and, you know, it's...

Whitney Menarcheck | she/her (10:10)
right, he made an impact. Mm -hmm.

Belinda Ennis (she/they) (10:37)
bigger and better than I ever could have dreamed of, you know, because even during parts in recovery, I was like, I feel like I should feel better than this. But there had to be a lot of patience and like with myself and, you know, I'm at a point now where I enjoy my own company. How crazy is that, you know? So I'm so glad that I did not give up because there were so many times I would have gladly given up my life and the fact that I...

Whitney Menarcheck | she/her (10:45)
Mmm.

Belinda Ennis (she/they) (11:06)
I have something to fight for now, really, really means everything. It feels like a privilege. I have the tools and the drive to go after what I'm passionate about, which I really love the recovery community. I can't drive it home enough. This feels like home.

Whitney Menarcheck | she/her (11:23)
Oh, how amazing. And thank you for sharing all that. I'm processing what you shared because there's a lot there. And do you mind me asking how old were you when your grandmother died and kind of the snowball effect started?

Belinda Ennis (she/they) (11:33)
Sure, I was 20 and turned 21 kind of in the middle of it. It was about a year of snowballing downhill for sure.

Whitney Menarcheck | she/her (11:53)
Yeah, okay. And you know, what I heard you say was that she was a very, it sounds like positive and supportive role, adult in your life. And to go into lose that, to have that grief process and then be told you, it sounds like you maybe manipulated into going to a certain program and.

Belinda Ennis (she/they) (12:19)
Mm -hmm.

Whitney Menarcheck | she/her (12:21)
If you don't, you're not welcome. So you lost your primary support and you were told go or you're not welcome. That...

Belinda Ennis (she/they) (12:27)
Hmm.

Whitney Menarcheck | she/her (12:32)
That is so heavy on the heart.

Belinda Ennis (she/they) (12:35)
It is, and I mean a faith -based program where I've said I've tried this path and it doesn't work for me, please don't make me do this. It does weigh heavy and so many people I feel like there are no options and I asked for options. I want people to know that they do exist. You have them even if you feel like you're being forced.

Whitney Menarcheck | she/her (12:43)
Mmm and dependent on the person situation, you know, it sounds like for you, it was a lot of family force. For others, it can be legal force, you know, and it really, the person is lost. And then the success is not based off of the person becoming who they want to be, but rather whether or not they check the box that some external entity said.

Belinda Ennis (she/they) (13:04)
Mm -hmm.

Absolutely.

Whitney Menarcheck | she/her (13:26)
is the metric of success.

Belinda Ennis (she/they) (13:29)
That's a beautiful summation of it, you know, and I've had to do a lot of separating out from how I define myself through the eyes of these authority figures and these family members. You know, it's very hard to separate. You know, it takes, this has taken time and it's still taking time. I still live in my hometown. You know, people talk about, you know, don't go back to your hometown. I would discourage saying that because you never know what you're capable of. You used to hate this place. I love it here now. It's all about environment and tone and choices, you know?

Whitney Menarcheck | she/her (14:05)
and how amazing to be able to take a place and rewrite the narrative with it. That's pretty remarkable as well.

Belinda Ennis (she/they) (14:13)
Yeah, it definitely rocks my socks off to put it, you know, in a unique way.

Whitney Menarcheck | she/her (14:16)
I love that. Yes. And so you talked a little bit about, you know, these programs that are out there, there are programs that are taking advantage. You know, unfortunately, recovery, mental health, substance use programs, many are bottom line driven. And because there are people who have external forces saying you have to do this, whether it's family or legal or what have you, some places have work that's requiring certain things. The power just taken away from the person, which makes them even more at risk of being taken advantage of.

Belinda Ennis (she/they) (15:01)
Absolutely, like the exploitation can run really rampant and it's everywhere and I want to be a part of that change. I think peer work is a really important part of that change and you know, it's the striving that we have to begin a partnership with the clinical side of treatment and to open the conversation. This is a really hard uphill battle, but we are part of a civil rights movement right now We are part of destigmatization. We are part of decriminalization so that these practices can be safer and so that people aren't driven into the shadows for trying to cope with their pain because life is hard.

Whitney Menarcheck | she/her (15:40)
Life is hard and life happens to everyone. And what I really appreciated about how you expressed your lived experience is that you included things that others may not have necessarily thought of, right? You talked about physical health, chronic pain, and there were other lived experiences that, you know, because there's a diagnosis, sometimes we're like, nah, whatever, you know, but.

Belinda Ennis (she/they) (15:43)
It does.

Yeah.

Whitney Menarcheck | she/her (16:09)
It impacts the person, it impacts their functioning, it impacts their sense of self, and those are just as hard, you know? And oftentimes those invisible illnesses are the ones that are most dismissed, chronic pain especially. You know, there's a lot of questioning, is it even valid? Are you really in pain? Have you experienced that?

Belinda Ennis (she/they) (16:18)
Absolutely. Oh yeah. Oh my gosh, you have to like prove it to people and like, that is absolutely something I've experienced and you know, don't get me wrong, there's a certain, there's a process that a lot of people with chronic pain that are also in recovery are familiar with where we almost manipulate the system without thinking of it like that at all. We are just looking for what we think is the right way to do things to soothe, to find comfort. And I have a fertility and hormone disorder. I have a jaw disorder. I've been referred for out of state surgery for no one in Arkansas will touch it. You know what I mean? There are so many people who are dealing with laundry list. And that's kind of why I gave a list of things that I've dealt with because people see all of their diagnoses and there is a judgment that comes out of society. You know, why do you talk about having all these things? You're looking for attention. I could say endless things about what I heard, you know, whenever I was trying to get help. And so like if someone is talking about these things, I guarantee you they are looking for a solution, even if it just seems like they want to talk about it. That can help people, you know, but chronic pain. Chronic pain is a driving cause I know for opioid addiction for sure.

Whitney Menarcheck | she/her (17:52)
Slowly.

Belinda Ennis (she/they) (17:58)
I know that many times I have been in some of just the worst pain of my life and I would have done just about anything to make it stop. But the tools and process that I've been able to find on my own and that I want to help other people find their unique recovery path because there is no one right way. There is no one right way it is unique to everyone.

Whitney Menarcheck | she/her (18:25)
Absolutely. And you said that we're going through a civil rights movement and that peers are going to be playing a central role. You've already mentioned kind of bridging over to the clinical side. What other ways do you see the role of a peer being instrumental in delivering that personalized care and changing the way that maybe the system has run for decades?

Belinda Ennis (she/they) (18:52)
I'm going to actually use this as a moment to kind of boost one of the nonprofits in Arkansas because they've set a great example and I want to follow it. And I'm actually, I'm going to start working with them this weekend. I'm very excited, but it's Northwest Arkansas Harm Reduction and it's nwaharmreduction .org. And, you know, I, I absolutely love what they do. They talk about social acceptance being,

Whitney Menarcheck | she/her (19:00)
All right.

Belinda Ennis (she/they) (19:21)
across the board, an unbiased thing. It is extended to everyone, no matter what you do or what you use. It does not matter because you're a person. They are the first and only program in Arkansas to have a clean needle exchange setup process. They are giving fentanyl strips. They're giving xylazine strips, which I didn't even know was a thing until recently. These things are emerging all the time. They're giving out condoms. They're giving out, you know, resources for STD panels. They have, you know, Narcan that they provide to people. So if you have someone like they have actively saved lives, you can go on their website and you can see a life was saved in Fayetteville, Arkansas, you know, from overdose this weekend. How amazing, you know, and these are really small things that all add up whenever we're talking about somebody doing this training or giving somebody Narcan.

Whitney Menarcheck | she/her (20:07)
Yeah.

Belinda Ennis (she/they) (20:18)
That one small step will save somebody's life. It's a guarantee. And so I really like what they've done to be a change agent across the board. And I want to start to do that when it comes to agency, federal, state level. I've seen examples of people just getting the language changed in inpatient settings to where it is more person centered. How much of a difference would that have made for me? And I think about how I would have felt to be in a more person -centered environment, instead of getting called a flight risk and all kinds of stuff.

Whitney Menarcheck | she/her (20:53)
Yeah. You know, could you actually speak to that a little bit more? What would it have been like? What was it the experience for you, the language you heard versus what you hope to have moving forward? What impact would that have?

Belinda Ennis (she/they) (20:58)
Mm -hmm. So I know that there is a lack of funding in a lot of treatment places, especially if they're state centers and things like that. And a lot of my inpatient experience for mental health intake was whenever I was a minor and it was not good. And a lot of it is due to people not being paid enough for their valuable services. I genuinely believe that. And they get run down and they get burnt out And it results in carelessness. And what I mean by that is, you know, man, I missed my phone call one night because somebody wasn't doing their shift properly and I couldn't get it made up. And those little things make all the difference in your day to day and how you feel about yourself. And, you know, when somebody puts your priorities first and they are advocating for you whenever, especially inpatient or, you know, treatment of any kind whenever there are certain restrictions on what you can do for yourself. We do want to live a self -directed life. We do want to promote self -advocacy and empowerment and finding tools and resources to better your experience. But there are times whenever there needs to be an advocate that says, hey, are we sure this person needs to be on a bunch of medication? Can I talk to them first and see what's going on? Are there underlying causes? Because I know that I was placed on over 40 different medications before I hit 18. That's insane. You know, because every time I was like, hey, this isn't working, they would reevaluate it almost monthly, sometimes weekly, and they would change and add and adjust the dosage and take things away and add and add. And, you know, I would go and look these things up and half the time, these medications aren't supposed to be getting taken together. They have interactions that can be fatal. And so I saw with my own eyes multiple times.

Whitney Menarcheck | she/her (22:36)
Wow. Wow.

Okay.

Belinda Ennis (she/they) (23:01)
the lack of regard it felt like for following processes that were in place for a reason to protect people. And so I think it comes down to, yes, we need to give our professionals more than a living wage. We should be able to thrive, not just survive. And peer support is one thing, but I mean clinicians across the board as well. Because we can't replace each other in this scenario. Peer support can't step in for therapy. Therapy can't step in for psychiatry. And around we go.

Whitney Menarcheck | she/her (23:21)
Right, right.

Belinda Ennis (she/they) (23:31)
you know, all of these pieces are important. We should be working together, not against each other, you know, because that does happen, sadly. It gets to be, why are you paid more than me? Because we negotiated for more, you know. Call us next time you wanna negotiate your pay. We would love to, you know, I would love to see all of us band together whenever it comes to recovery, and I don't care if that person is actively in recovery or not. If you're contributing towards the cause, You know, this is one step towards change that we can make and it all starts with the language. It really does.

Whitney Menarcheck | she/her (24:07)
I am just in awe at how you express that. And I hope everyone can rewind right now and listen to that again. Because yeah, the language sets the foundation. Because if we look at it from just the way that the human brain works, our language impacts our thoughts and beliefs, and those impact our actions.

Belinda Ennis (she/they) (24:15)
Hahaha!

Whitney Menarcheck | she/her (24:33)
And so we can change them by changing our language and by changing our language, we can also reduce the negativity that someone who's struggling is experiencing. Yeah.

Belinda Ennis (she/they) (24:37)
Yes. Yes, it's hard enough to reach out and then to have to continually re -identify yourself in a way you don't care for. I think we should be able to empower people to take control over how they're referred to. Being referred to as a peer instead of as a junkie is pretty great. There was a lot of stuff in training that to be in peer support work that I didn't realize was so there was stigma that I didn't realize in certain terminology that I've always used such as mental illness. Somebody, one of the facilitators said, mental health concerns and that reframing even helped me with how I see myself. And what he said was, I don't feel ill. I'm doing many great things for myself and for others on a daily basis. I don't feel mentally ill right now. So I don't like to call myself that. And that was huge for me to hear. I...I wanted to refer to myself as person in recovery instead of patient. Simple as that. People are going through something. They don't need to be pigeonholed on top of it all and isolated and outcast. Because that's what these labels do every time without fail. There is always somebody left out on the sidelines, period.

Whitney Menarcheck | she/her (26:11)
Absolutely. And that's unfortunately the case. And we need, you know, our brains, I get it, our brains naturally categorize and everything. That's how it can be. Absolutely. It used to be a survival mechanism and it still is at times, right? But we are, we're defaulting to that.

Belinda Ennis (she/they) (26:25)
It can be helpful.

Whitney Menarcheck | she/her (26:41)
too much rather than stopping thinking and being mindful and considering? You know, we all have a history and we would want people to respect our history. Are we stopping, pausing, and respecting the potential history that the person that we may be looking at has had? Whether or not we know it, and we may never know it, but can we at least maybe look at them and say, I'm going to give, I'm going to recognize that they likely have a history, a story that I don't know.

Belinda Ennis (she/they) (27:08)
Right, and I don't have a right to that, you know what I mean? And as soon as somebody entrusts me with a piece of that story, I don't use that to label them. If I have to describe them in some way that involves one of those aspects, you know, again, something from training that, so ex -con, inmate, criminal, justice -involved individual, I loved hearing that. I loved hearing these things, because I don't think about this stuff. And other people have come up with amazing ways to talk about it. So, you know, I wanna have not only a safe space, but a brave space for people to work in. They don't only feel safe to entrust themselves to others, but they feel brave. They want to be themselves.

Whitney Menarcheck | she/her (27:50)
I've never, yes, safe and brave, let's do that. Let's make it that way. And so clearly you have a passion for recovery, not just because of your lived experience. I mean, you have thought so much, it's clear about the impact of one person's actions on others. So it kind of is obvious why you became a peer support. And...As you reflect on the journey so far, you've referenced your trainings. What is something you'd like people to know about peer support work that maybe is either misunderstood or just not realized?

Belinda Ennis (she/they) (28:33)
We are not therapists. I'm not here to give you advice. There are many times where I wish that I just had a space to cry and to talk and to process without somebody trying to solve my problem. Because I'm going to solve it. At the end of the day, this is my problem to face. But when I'm talking about myself, at least, in regards to peer work, I need someone that they might help me explore my options or reframe what I said back to me in a way that...

Whitney Menarcheck | she/her (28:46)
Bye.

Belinda Ennis (she/they) (29:02)
helps me gain a better understanding of the situation I'm in. Help me mitigate the overwhelm and set small goals so that I can reach my large goals. Set a recovery plan, you know? And it's not for me to come up with anyone else's recovery plan. It's for you. It is only for your benefit. And I'm not going to, you know, I want to make sure that I have absolutely no like unconscious bias because that's something that is bled through and some of the support I've received and the clinical treatment I've received even. And specifically, I wanna talk about having secular support and support for faith transitions because the state that I live in is very religious and it's a very religious recovery community and I have a great amount of respect for that. A higher power can make the difference between someone's life and death or their quality of life versus suffering And I completely understand that, but I want there to be spaces for everyone that, you know, I'm free to talk about, you know, or speculate on what I might believe in, you know, a little bit more open and conscious that everyone's, again, everyone's recovery is different. Everyone has a different, you know, purpose for their life at the end of the day. And sometimes that purpose changes from minute to minute. And I wouldn't dream of telling someone your progress is because of my God that I believe in or whatever, because I've been told that and it doesn't line up with what I believe in. And so I just want to tell people, you can explore, you are free. You know?

Whitney Menarcheck | she/her (30:39)
Right, absolutely. It comes back to that unique recovery. Everyone's is gonna look different. And we say that a lot, right? Individualized. But we don't always think about kind of the nuances of what the individualized look means. So I think that's a.

Belinda Ennis (she/they) (30:51)
Yeah.

Absolutely. How much our unconscious bias might bleed over, you know, I still have it. Everyone does.

Whitney Menarcheck | she/her (31:12)
Yes, absolutely. You are so true. And we have to recognize that we're susceptible to that. We're human, that it can be there. And so that's another call from being intentional in our words and being aware and mindful, and then open to maybe someone saying, hey, really, the way when you just said that, it didn't feel great And I think that comes back to that power of the person, maybe patient, client, individual, person receiving services, to be able to feel safe, to say, I don't want that care, or that language hurts me. And just continuing, yes, yes, absolutely. So safe and brave for the workers, safe and brave for the person.

Belinda Ennis (she/they) (31:55)
Right. Take that power back, you know? Yes, that man, we should make t -shirts.

Whitney Menarcheck | she/her (32:09)
That's a yes. So as we come to the end of what has been a great conversation and went by really fast for me, can you share, you've touched on this a little bit already with talking about language, but can you share an example of a stigma you've experienced, whether it was a word that was used or assumption that was made?

Belinda Ennis (she/they) (32:33)
The subject of trust is really difficult when it comes to recovery and the relationships, you know, it was really hard to get that back and it's hard to establish credibility. You know what I mean? I think that was one of the hardest things that I found is I have all these, you know, I'm coming out of my treatment program and I'm looking for jobs and I'm...I don't have anything on my resume really, because I've been up to no good for part of my life, you know? Not that that's how I would have put it at the time, but I try to use humor to lighten at least my own situation. I find it helps. But that aside, I really, I'm very passionate about removing the idea that somebody has to earn their relationship back. You know, there can be trust established right away. The key point is boundaries, you know, setting boundaries for yourself, respecting other people's boundaries, you know, but it was really hard to do that at first because people don't talk about doing that right out of recovery. It's almost like you owe the world something because you were out of it for part of the time. And I just don't think that's true. We were in pain. We needed help. You know, I needed help. So I just want to give that support of, you know, I trust you immediately. And it's not until you give me a reason not to, I don't want to put, you know, a qualifying statement after that. If you come into my, you know, I don't want to say care, that's not what it is. If you come to me for peer support services, I trust you. I know that you wanted to talk. There is absolutely no reason for there to be anything to interfere with that.

Whitney Menarcheck | she/her (33:56)
Absolutely.

Belinda Ennis (she/they) (34:22)
You know, that rapport is crucial. It's kind of sacred, you know. We're not therapists, but the rapport can be kind of similar when it comes to the relationship. Kind of. Just want to... I do want to put a qualifying statement on that.

Whitney Menarcheck | she/her (34:33)
Yes, yes. No, I mean, connection in general is important, you know, and so rapport is traditionally, yes, talked about with counselors and therapeutic rapport. There is peer rapport, though. There is the need to feel connected and safe and respected. So I think that's a great little highlight there.

Belinda Ennis (she/they) (34:50)
Yeah.

Whitney Menarcheck | she/her (35:03)
But finally, for the person out there who's listening or watching, who's going through a tough time, don't talk to me right now, you talk to them. What would you like them to hear?

Belinda Ennis (she/they) (35:16)
I want you to remember on the hard days that there is hope. There are good people in the world that care about what you are going through even if you have not met them yet. They exist. You deserve a full rich life no matter what you have been through. And I don't want to say what you have done, what you have been through because again, life is hard. There is no shame in feeling like you need to talk to someone because you can't do this by yourself anymore. I want to say don't stop reaching out because it can be really hard to find the right treatment or recovery path for you, however you'd like to put that. It's hard to find the right individuals that you gel with and you connect and vibe with. Don't give up, keep reaching out. I went through a good handful of professionals that were actually more detrimental than they were beneficial to me, but I learned how to say this isn't right for me, I'm moving on. And not to focus on the overwhelm of, all that there is in the world that could go wrong. There's so much that can go right. There are solutions, there are always going to be problems, but there are always solutions and you do have them inside of you. I want to help provide support. There are many peer specialists that want to help provide support so that you can unlock who you want to be.

Whitney Menarcheck | she/her (36:31)
Amazing. Thank you. And Belinda, thank you for this entire conversation, for being vulnerable and opening yourself up in your story and sharing it. And thank you for your ability to take power back.

Belinda Ennis (she/they) (36:50)
Absolutely. I hope that everyone that hears this feels empowered. There's a good future for you. I'm telling you, there's good stuff just waiting.

Whitney Menarcheck | she/her (36:59)
What a great way to wrap it up and end on that optimism, that hope. And if you're listening and you are as energized as I am right now, that infilled with that hope and connecting with Belinda and interested in working with her, please visit straightupcare .com and you can schedule an appointment. The link is also in the show notes. So on behalf of Straight Up Care, thank you for joining us.

Belinda Ennis, Peer in Training, Discusses Safe and Brave Spaces for Recovery | Meet The Peer Recovery comes in many forms and following various diagnoses, life experiences, and hardships. In this episode of Meet The Peer, Belinda Ennis, a Peer In Training, shares her experiences with mental, physical, spiritual and emotional recovery. Belinda’s passion for […]

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Solving the Extensive Peer Support Specialist Burnout: The Straight Up Care Platform

Posted on May 6, 2024July 18, 2024by

Whitney

Challenges experienced by peer support specialists have long been known by those willing to ask and listen. In their February 2024 Policy Brief, Gaiser et al, at University of North Carolina Behavioral Health Workforce Research Center, provide evidence to support the well-known anecdotal information for why peer support specialists have experienced such high rates of burnout and turnover. The findings published by Gaiser et al, are the very reasons why Straight Up Care chose to revolutionize mental health and addiction peer support service delivery.

As reported by Gaiser et al, “Nearly half (42%) of survey respondents reported considering leaving their position, and 44% reported an intent to leave in the next year.” Take a look at how Straight Up Care has been leading the way in empowering peer support specialists.

Most common reasons for leaving current peer support position, according to Gaiser et al.:

Problem: “opportunities to pursue a position with better pay/benefits (76%)…”

Straight Up Care Solution: Peers on the Straight Up Care platform get to set their own rate, schedule, and clientele to work with.

Problem: “career advancement/promotion opportunities (61%), burnout (41%), and a lack of advancement opportunities in their current role (41%)”

Straight Up Care Solution: With Straight Up Care, there are no limitations – we support each peer specialist in achieving all their wildest professional dreams through a comprehensive platform that offers administrative and compliance tools, ongoing free trainings, and a team dedicated to helping the peer specialist on their journey of success.

Problem: “Other factors associated with intent to leave included being in a role that requires completing tasks that fall outside of PRSS job responsibilities, high levels of burnout, and being unable to meet their financial needs.”

Straight Up Care Solution: At Straight Up Care, peer specialists work for themselves, we call it being a PeerPreneur – so you’re in control of what work you do, when you do it, who you work with, and what you get paid for your time. We’ve simplified all the administrative work so that peers can focus on delivering support. With our free monthly virtual gatherings, we ensure peer specialists receive the support, connection, and encouragement they deserve.

While everyone else is busy playing catchup, we’ll keep being leaders in peer support specialist empowerment. Join today and begin your journey as a self-employed peer specialist.

Follow Straight Up Care

The evidence is out – Straight Up Care knew the needs of peer support specialists and is leading the field in empowering peers.

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