So you got a diagnosis...

A mental health diagnosis can be both a burden and a relief. Some see it as a label, some as a guide. Hear what it was like to receive a diagnosis and treatment through personal stories and poetry.

Please note, the poet does swear once during the second half of the episode.

Learn more about mental health and find more resources, including art and creative prompts, at mentalhealthmosaics.org. 

Chapters

• 0:00 What is a diagnosis?
• 2:40 Jered's story
• 16:40 Liz, poetry, and OCD

Transcript

[00:00:00] Anne: Welcome to Mental Health Mosaics from Out North, an arts non-profit located in Anchorage, Alaska on the unceded traditional lands of the Dena'ina People. I'm Anne Hillman.

When many people think about mental health or are trying to figure out what's going on inside their heads, they think about seeing a clinican or a doctor and getting a diagnosis.

[00:00:23] Summer: The medical model uses a diagnosis for very good reason, right? So we have a systematic way that helps us know what the correct treatment is. Right. We're not just, we're not just, uh, casting our net for what we're going to do. and that evolved over a long period of time.

[00:00:43] Anne: That's Summer La-fae, a licensed social worker and behavior analyst who works at Providence Hospital in Anchorage. She also identifies as a peer -- someone with learning differences and past experiences of trauma. She's worked in the field for decades. Summer says she's seen that on an individual level, a person's relationship to their diagnosis can vary a lot.

[00:01:07] Summer: I think knowing yourself and determining what part of your identity your diagnosis might represent can be a path to kind of enlightenment and a step on the road to wellness. I also think you can, I've seen and experienced people that over relate to their diagnosis or define who they are as a person, as their diagnosis.

I also have seen, um, people not seen as people, but as their diagnosis. 

[00:01:42] Anne: For Summer, getting a diagnosis is, to a certain degree, a means to an end. If you have one, then insurance will pay for your treatment. She says that's problematic. A diagnosis or, as she calls it, a label, isn't the be-all and end-all of treatment. Even people with the same diagnosis might need very different things, and some people are really hard to definitively diagnose. Summer says we need to change systems so that people's needs are met, with or without a diagnosis. 

[00:02:16] Summer: How do we do things differently in a way that moves away from the label being the emphasis for how we serve people or exclude people from services? If you don't have a diagnosis, it's very hard to get services.

It's very hard to get what you need, but many people still need help that don't have a diagnosis. 

[00:02:40] Anne: In this episode we're exploring what it's like to receive a diagnosis through the stories of Jered and Liz. We'll hear some poetry, too. First, Jered.

[00:02:51] Jered: My name is Jered Mayer. I am Alaskan born and bred. I am an author and a vagabond. I like to move around a lot.

[00:03:01] Anne: So I'd love to start with kind of your coming out story, if you will. What it was like when you first started realizing that you had mental health challenges and what it was like to talk to people about those. 

[00:03:14] Jered: Sure. It was, it's something that I've lived with for a really long time. I had, I remember the first time that I started having like suicidal ideations. I was about 10 years old. And I grew up in a mostly healthy household.

I grew up with grandparents who were very supportive and loving, but my parental figures were in and out of my life in a lot of chaotic ways. And they used me a lot as like a bargaining chip. And between that, and then I was bullied at school, it just really wasn't a healthy surrounding.

And I remember I was sitting like on the bus one day and I was just thinking about how much I just wanted to die. I just wanted all this, like these feelings, these heavy feelings to just go away and that kind of, came and went as I got older. And I think when I was in about, I think starting off in high school was about when MySpace and social media started getting really big. Before that was like message boards and stuff.

But with social media and stuff, I had a platform to express feelings that I was having. And when I was feeling down and there was a lot of times that my peers were just uncomfortable with emotional expression. Especially I think being as expressive as I was as a young man. When I was growing up, boys were supposed to be tough.

And if you were sad, you just kinda toughed it out and, and 

[00:04:38] Anne: Is that what you did when you were 10? Or did you talk about how you were feeling with your grandparents?

[00:04:42] Jered: I got in a lot of fights. I think so I did, but it was not expressed in a healthy way. It was like a, I started talking back to people that were bullying me.

And so I did stand my ground a little bit more which I think is important too, to set boundaries for yourself. And, but I had a lot of anger issues, I think, growing up. And when I was 21, I moved to Los Angeles. And I was really stressed out down then. I was, it was dealing with a lot of money issues and relationship issues.

And I think that was the first time that I really went into kind of a bipolar depressive spiral. 

[00:05:17] Anne: Describe what you mean by that. 

[00:05:19] Jered: Sure. So, it's like when you are either really depressed or really manic, you get into a mindset, um, where you're overactive. Um, you're, you're overthinking and, um, you're anxious and you're paranoid and things that are irrational begin to feel rational. So you start lashing out at people thinking that you're being rightfully defensive. Or you're being, um, hurtful and thinking that you're being honest. Um, you're. Just acting in manners that in the moment you feel are healthy coping mechanisms and are really isolationist, um, activities.

And, uh, maybe you're pushing away people because you think that you're doing it for their benefit. You don't deserve them, or you're trying to protect them, but you're doing it in really hurtful ways. Um, and it really isn't until you start coming out of that, that you look back and you realize, like that's not a normal thing to have said or done.

Um, and so that kind of, uh, it ended poorly for me. And I ended up leaving the state and having to start over a couple of different times. But it wasn't until I was about 25 when, um, my grandfather had passed away. And my grandmother had passed away a few years before that. And they were essentially both my parents.

So I felt orphaned. And I was, um, in the middle of another relationship. And, um, I just got into like a real desperate, I was just desperate for her attention and I was desperate for her to speak with me. And I was very clingy and ended up in a lot of big fights. And, um, I almost lost my job because I couldn't get out of bed.

And I think it was at that point that I realized that like there was something, you know, I recognize that there was a pattern of behaviors that I was occasionally going through spirals when I was in in periods of emotional distress. And, uh, I was working at, AT&T at the time. And they offered a program for, I think there's like four or five company paid trips to, uh, um, To a licensed therapist or a medical professional.

And so I took them up on the offer and I found a doctor that I really liked and, uh, through conversations with him is when he started diagnosing me as bipolar depressive and as having, um, severe. And when I, I started learning about that, when that came out to me, I started researching, you know, what are, um, what are symptoms of oncoming spirals?

What are, uh, um, You know, what are the things that happen when you're in the midst of those things and feelings that you might experience? And I read about other people's experiences and, and looked up different coping mechanisms. Um, I'm not on medication myself. I'm not adverse to it. I think that it helps a lot of people.

Um, I'm personally concerned about what the effects of medication might have on my creativity. Um, And because I move around so much, if, uh, I were to lose like health insurance, what side effects would happen if I were to run out of medication and not be able to refill it. So I have a lot of personal concerns, but I don't think that anybody listening to this should feel the same way that I do necessarily.

Um, so because I'm not on medication, I try to look up other, uh, methods of recognizing when symptoms are oncoming or spirals oncoming and finding ways to try to mitigate that. Find ways to occupy my mind. Uh, it's not always effective. I still have intense experiences. And in situations like that, I've found that it's very important to cultivate a supportive network around you.

Uh, so that's kind of what my experience has been like for the last eight or nine, 10 years. 

[00:09:20] Anne: So when you spoke with a therapist and he was like, Hey, I think you have this diagnosis. What was your reaction? What did it feel like to be given that as a label? 

[00:09:29] Jered: It felt validating to have someone listen to what I'm saying and be able to put a a name on it for someone to like, listen to that and recognize the things that they're hearing and, let me know.

No, you're not crazy. There's just. Something that's going on in your mind that affects you in these particular ways. 

[00:09:48] Anne: And so with that validating feeling did, did it help you sort of understand differently what you had been experiencing over the past few years?

[00:09:56] Jered: it's a process. It's a journey. While there's that sense of validation that someone recognizes a specific problem. It was difficult for me to not initially just still feel broken okay. So there's there's a terminal illness in me, there's a a problem that can be assisted with things, but it doesn't ever go away.

And so it's difficult to know that having a permanent illness like that the effect that it can have on people around you and the effect that it can have on your personal and professional lives and social lives. So when I got the confirmation that there was something going on with me, but then I also had to deal with the reality that this was something that I was going to have to live with.

And so it was difficult not to feel overwhelmed by that revelation at first. But, when I to go back about that about it being important to have a network of supportive friends and everything, when you discuss these things with them, they can give you that reassurance that it's it's just something that they're going to walk with you on that path and help you find ways to heal or to to help deal with it.

I think that mental illness in general is still considered taboo in a lot of ways, because there's not a lot of understanding about it. The mind the brain is a complex organ and it's what people call an invisible illness. They don't see like the physical reactions that someone with a cancer diagnosis might have, or multiple sclerosis or Parkinson's.

And so it's difficult to wrap your mind around it when you can't see it. And so I've tried to I've spent a lot of my adult life trying to bring awareness to that because I think that it's important for people who don't have a mental illness to understand how to help their friends who might. And my friends have been very accommodating and receptive to listening to me and also to learning on their own time, too.

[00:12:02] Anne: When you first start a friendship how soon do you let someone know, how do you figure out when to tell somebody? 

[00:12:08] Jered: As far as my personal life goes. I speak openly about my experiences and when I'm having a bad day or a good day when I'm feeling manic or depressed I'm a writer and unfortunately social media is a platform in which I can express both my creative outlets and also my non-fiction or personal experiences.

And it's important to me as a creative and as a as a spokesperson, hopefully for mental health advocacy, to be able to share those experiences, even though it's difficult sometimes to engage on social media. It's a very distractive platform, but because of that, I think most people that I know are aware of it, even in early stages of relationship, maybe it's a friend of a friend who's added me on Facebook or who's following me on Instagram. 

[00:12:55] Anne: And When you're thinking about who you are as a person, where does mental health and where does being bipolar fit into this, your personal construction of who you are? 

[00:13:04] Jered: I, it's tricky. It's a good question. I don't think that my mental health defines who I am at all. I think that it's an aspect of my life and the things that I experienced, but when I think of who I am, it's more about what I would like to do while I'm alive and experience and what kind of impact I can leave on the people around me and the people whose paths I cross through life. 

, sort of I kind of have to treat it as a tool in that way. If I'm going to have to deal with it anyway, then maybe I can document my experiences, so that those who don't have that same affliction can better understand it. And maybe use that knowledge to better support their friends.

And for those who do have, it can know that that they're not alone. And that they're heard, I guess. 

[00:13:58] Anne: You chose the word affliction there. Why? 

[00:14:01] Jered: It just, it feels an attack when, when big spirals come on and it feels it's a, it's not something that's in my control.

So it's something that has been thrust upon me. And and when it's severe, it feels like an assault. And I guess since it's not going away, I just feel afflicted by it.

[00:14:21] Anne: .But it also sounds like you feel like your creativity is tied to it in some ways. 

[00:14:26] Jered: Yeah. Sometimes I did mention that one of my concerns for for going on medication is that I was concerned about the effect that might have on my creativity.

And I think that the part of it is my brain is all the best way I can describe it. As my mind is always loud. It always feels like there's a thousand thoughts going in there all the time. Concerns. Story ideas. It's everything. And I feel like if there's something that quieted that, then I might not be able to find some seeds for creativity that I would be able to use to, to maybe put words together in the order that I would like to do them or construct a storyline the way that I'd like to do.

I, I guess I don't necessarily. I think that there's the busy-ness is I think contributes to my creativity, but the downside of that is that it's like a, it's like a perfectly balanced Seesaw. And sometimes it just tips too far in the wrong direction. And I feel like if it's that instead of a Seesaw works on a fulcrum, and when it's balanced that way on the fulcrum, I feel like I'm being creative and I worry that maybe some medication that might remove that busy-ness is basically taking away the fulcrum and it's just setting it flat on the ground. So I don't have to worry about it tipping one way or the other, but I no longer have that creative centerpiece.

[00:15:46] Anne: Is there anything else you'd want to add? Anything else I should have asked you?

[00:15:51] Jered: I think that just in general, for anyone that like, maybe has feelings like this, or maybe it's been diagnosed. The important thing to remember is that I know that when I first found out I had concerns and fear that what I was going through was untenable and that I wouldn't be able to that no one, I felt like people would have a hard time loving me.

And what I found instead is that as I. Learned more and more about myself and talk to it about the people around me that I've had more love shown my way than ever. And so it's important not to become discouraged. It's important not to believe that you're broken or weak or that it's not something that can be overcome.

It's a thing that maybe you have to live with, but it's a way to learn about your own strengths and your own adaptability and while it should never define you it should never be a part of you that you're ashamed about either. 

 (music)

[00:16:53] Anne: Liz Wulbrecht was first diagnosed with OCD when she was a child. Now in her late 20s, Liz turned to poetry during the pandemic to help her process what it's like to live with OCD.

[00:17:07] Liz: OCD is obsessive compulsive disorder, um, and it's characterized by having intrusive thoughts and, , to cope with these intrusive thoughts. Um, you often have a compulsion, um, and that compulsion could be a lot of things like, um, an easy one to explain is, you know, an intrusive thought that you're covered in.

And so you have to, to bathe very frequently as your compulsion, so like hand washing or showering, um, to the point of excess. Um, so other things, you know, it can be completely unrelated. Like, um, I used to have, um, Intrusive thoughts that I was sinning. Oh. Cause I went to Catholic school as a kid.

And so I was always worried that I was like lying or cheating or something. And I used to do very interesting. Compulsion's like waving in mirrors or like windows in tapping on walls and like counting in my head. And that would just sort of like alleviate the pressure of the anxiety. And sort of over time that, you know, manifested into harm OCD, which is characterized by, um, thoughts of harming other people or yourself.

In my case, I very much worry that I'm causing harm to someone else. So when the pandemic came, I wasn't worried specifically about myself. I was worried that I would get it and then give it to somebody else and then they would die and it would be my fault. And so when I started having these really severe anxieties, like I would, I remember in the very beginning I went for a walk and I, I slipped on the ice and some really nice older man, um, helped me up.

And then I had a panic attack that I had COVID I gave it to him and he was gonna die. And then I wrote a poem. And then I started writing poems when I was having these anxiety attacks and it would sort of alleviate the pressure of, the anxiety that I was feeling. And so that's sort of how I got back into writing poetry was I would start having these anxiety attacks and then I would write, and then I would, feel better.

Liz's poetry series, an Ode to OCD, was part of the Mental Health Mosaics Art Show. Here's Liz reading one of her poems.

 This one is called taking stock. I'm still here, but so are you, we've learned to live together hand in hand. We'll never be not, co-conspirators just one lost soul and her constant enemy, but with any foe, there was a strange empathy. I've lived with you since I was young, growing strong in your embrace without your twisted gift of guilt.

I wouldn't know resiliency. 

[00:19:58] Anne: Ah, the strength that you can take from the pain. 

[00:20:01] Liz: Yeah. And I've been living with, um, OCD since I was eight. So, um, yeah, it was just kind of about growing up with it and then where I am today and just feeling like I'm stronger for it, or, um, have a better time learned healing and coping mechanisms from, you know, living with it for so long.

[00:20:25] Anne: Would you, would you mind talking about like what it was like to be a little kid with OCD? 

[00:20:30] Liz: Yeah. Um, I wasn't diagnosed originally, so this was over 20 years ago. Um, and I don't think OCD was as prevalent in media. 

Yeah. So it was very confusing for me. And it was very confusing for my parents because it was obvious that there was something going on and, um, they were supportive, but they were also like very irritated with, you know, the fact that I'm doing all these strange things and asking them these strange questions, because like part of OCD too, is like you're seeking re-insurance reassurance. So like, I would have some, you know, intrusive thought and then it would go to my mom and be like, I'm thinking this is that okay?

Is that okay? And probably 20 times a day, I would go to my mom and be like, oh, I just had this thought. Is that okay? And she'd be like, yes, Liz. And then I would just repeatedly do it throughout the day. Um, and at a certain point as a parent, you're just like, why do you keep coming up to me and asking me these questions?

Um, and so I actually started seeing the school counselor, um, and. uh she didn't, she wasn't like a trained, like, you know, therapist or 

guidance counselor. 

She was a guidance. She was a guidance counselor. So she didn't really help cause she didn't really know what was going on either. And then when I was 12, um, my parents sort of sent me to a therapist where I was diagnosed.

And at that point I was able to see a therapist who specialized in o-C-D in children. 

So that was great. Um, and really helpful. And then, you know, when I was 15, I was able to go on medication. And so that was that further helped with controlling the symptoms. It was a bit of a dream journey from when I was eight to 15, um, sort of a strange period of my life.

What's the next poem you'd like to share?

Since you asked me about what it was like having OCD as a kid, um, so I went to Catholic school and. There's this thing called scuplosity.

It's very specific to Catholicism and it's, um, like sinning obsessions. Because like Catholicism can be pretty scary. Um, and for me as a kid, it was really scary. And then I was constantly. Worried that I was like sinning or I was going to get possessed or I had to like do all these religious, like compulsion's like sleeping with the rosary and like praying and doing all these like things that were very stressful.

And so I wrote this poem that kind of. Talks about that experience of it. Um, so it's called footnote two. 

The only footnote living with mental illness is like fighting off a colonizer, like striving against the tidal wave of evangelical Christianity, seeking to claim every inch of every being into its will.

And its will only dictator of all thoughts and actions. It feels so useless to fight. And then I remember why I'm here and I'm angry. Scrupulosity from the root of all evils institutes. You made me in more ways than one born of your constructs, slave to your precepts, religion planted the seed, Pope priest, Bishop king, all control through fear, fear of sin, born of woman.

I'm so fucked. 

[00:24:09] Anne: Did your family see the effect that this religion was having on you as a youth? 

[00:24:15] Liz: I think to a certain extent, um, it's really weird because my family isn't religious. Um, but I went to a Catholic school and I think they knew that. I mean, obviously because. I kept going to my mom and asking like, am I sending, am I sending, like, I thought that I, like, we were learning cursive today and I shaped the letter R like my classmate am I cheating?

Like it was not a sin, you know? Like, so she'd be like, no, but so I think they, they knew, um, but.

I just, I think they just thought that I was like really into it or something, you know, like I just really liked it. 

[00:25:04] Anne: Wow. 

[00:25:07] Liz: I mean, we went to church every Sunday and you know, but they weren't like super Catholic or anything. They just thought I had like a real.

I don't know, my dad called me the moral compass of the family. Cause I'd be like, we can't miss church. We have to go to church. Like we have to, you know, so they just were like, oh, you don't Liz likes it. Okay. When in reality it was very stress-inducing for me. 

When did they start realizing that it wasn't what they thought?

Um, I would definitely when I was diagnosed with OCD and diagnosed with like scruplosity, um, that like so many people have suffered with this specific form of OCD that it has a name, um, that I think they were like, oh, okay. Like, this is, this is sort of an issue. Like, we need to talk about this. We need to work on this.

For you, what was it like to be diagnosed as having OCD?

So for me it was, it was a relief because, um, like I said, I started having OCD when I was an eight year old and it was very, very confusing.

 I didn't really understand the feelings that I was having and why I was doing these compulsions and knowing that there was a name for what I was experiencing, that other people were experiencing it, that there was treatments, specifically for it. Um, for me, I like, I, you know, saying the poem, I hold that close.

 For me it was just a really important moment in my life. It made me realize that the behavior, the thoughts, like they weren't me, like, that's not me as a person. It's the OCD. And I can kind of separate it from myself and put that over to the side and it doesn't define me and understanding that is, I think that one of the first steps to healing is it's not you it's the mental illness.

You might do something that you're like, why did I do that? Or, you know, I really regret that thing that I did because sometimes having mental illness can cause you to engage in behaviors that you're not proud of.

And then you can realize, like, that's not me. That was, you know, something that I did because I'm going through a really hard time and I can forgive myself. Um, and I can move on from that. And I can, you know, get therapy. I can't can, you know, if, if it's accessible to you or get medication, if it's accessible to you or just knowing that it's not, you, I think can be really, really helpful.

What the final poem you would like to 

leave people with?

 I think the final poem I should leave you with is the last poem in the booklet. And it's called a path to healing. 

Each diagnosis I hold close, nurtured like a small child for, with each comes, forgiveness and absolution of guilt and explanation for behavior.

I can't help, but hate. This diagnosis I carry as something separate for me, an illness that doesn't define any aspect of my personality. This understanding allows hope to arise as beautiful as a butterfly.

You can read or listen to more of Liz's poems and check out other art, resources, and creative prompts on our website, mental health mosaics dot o-r-g.

This episode was written and produced by me, Anne Hillman, with editing by Jenna Shner and Susy Buchanan. Audio mixing by Dave Waldron. Our theme music is by Aria Phillips. Mental Health Mosaics receives funding from the Alaska Center for Excellence in Journalism, the Alaska Mental Health Trust, and the Alaska State Council for the Arts. Don't forget that you can subscribe to this as a podcast on any podcast app and rate it to help others find it! Thanks for listening!