Interview Twelve: My Illness is My Responsibility

“I don’t want to be thought of as a victim, as this sufferer. I want to be thought of someone with agency. Should I define myself only in reference to my struggles? What does that signal to other people? I’m trying to grow and become stable enough to have functional relationships, so is talking about my mental illness signaling to others that I am dysfunctional, impacting my ability to have those relationships?”

[Content Warning: Criticisms of Mental Health Self-Advocacy Movement, Mild Language]

Reading Time – 13 minutes

Navigating Life and New Diagnoses

This interview came at an interesting time, because I ended up meeting with one of my therapists today. The conditions I’ve been diagnosed with over time, including the research diagnoses I got today: autism… high functioning, generalized anxiety, obsessive compulsive disorder, recurrent major depressive disorder.

I’ve recently had a surge in symptoms over the past two weeks due to a number of changes. Graduating, living independently, starting a new job that’s not working out so well for me. The election. I’ve had at least a few times in the past few weeks that I’ve broken down crying to my therapist… about how if Trump gets elected, I could be dead in a year. Some people consider that an overreaction, and it gets to the point where I’m like, so how scared should I be? Though, I’m really not doing myself any favors by freaking out about it before it even happens. I have to limit my exposure to that stuff to a few times a day, because I’ll just worry about it the whole day and get nothing done.

[Interviewee’s Note: Since Trump has been elected since the conducting of this interview, I and my friends were very distressed and traumatized by it. A good deal of crying was involved. But our moods are stabilizing, we are beginning to think about how to deal with it, planning ahead for it, and reaching out to others. I’ve begun taking Fluvoxetine (Luvox), and my symptoms have significantly improved. The Luvox may or may not be related to the improvement of my systems, as Luvox normally takes 8-12 weeks to reach its full effectiveness.]

Social Scripts and Rigidity

Moving out on my own has been stressful. Independent living has its perks, but I don’t get to spend as much time with my friends as I’d like to. It all intersects with my social anxiety and my autism. The difficulty with the autism is that, with conversations like this, I seem to do perfectly fine, as far as I can tell. I’ve had several people tell me that, at least in person, I don’t give off any signs of having autism.

But, when it’s not a one-on-one situation where I get constant feedback–like, if I’m messaging someone, or talking over the phone, or having to plan out the interactions with people–I go back to this set of social scripts that I gradually learned over time, scripts I use to determine what is and is not a good way to talk to and respond to people. Scripts I’ve learned from watching movies and studying the body language, reading up on how to talk to people, as well as trial and error. But it still gets rigid sometimes.

Social Interactions in a Vacuum

I invited some of my friends to hang out last week. We had hung out two weeks prior. I felt like I shouldn’t invite them out immediately a week afterwards, but should wait two weeks, so I’m not overwhelming. They initially seemed like they could make it, but then there was some confusion, and they stopped responding to the group message. I later found out they had gone and done something else. It led to me freaking out, because I took it as a rejection directly at me.

Another example, my friend recently sent me a snapchat, and I responded to it with a joke. They gave me a “haha,” but I was thinking about how in the past they’d given me a “hahaha.” This is the gritty, uncomfortable, and frankly embarrassing details of it. Because they only responded with a “haha” to my joke, I started overthinking it. “Oh my God, the joke fell flat. This could mean they hate me now.”

I sent that same friend a snapchat this morning and got a very positive response, so my anxiety completely vanished, because I have confirming evidence that everything is fine. It’s like I approach every social interaction in a vacuum. Other people go into friendships generally believing that everything is fine, not looking for evidence to confirm otherwise. I come in anxious that the relationship could fail, and I require significant positive evidence to confirm that the relationship is actually fine.

Self-Administered Exposure Therapy

Despite the fact that my depression has increased over the past few weeks, I don’t feel as though I’ve necessarily regressed. Obviously my symptoms are back. I’m feeling bad again. But, at the same time, I’m not the same as I was two years ago when my depression was pretty significant. And I’m not the same as five years ago in high school, when I was self harming, three times during my senior year.

Since then I’ve slowly developed a number of skills. Social skills, in terms of dealing with depression and anxiety. Lifestyle changes. These have all had measurable effects on my life. I’m better able to deal with stresses and anxieties. These tools I have keep it from going to where it used to be. If that situation with my friends happened to me five years ago, I would probably be messaging them excessively, constantly apologizing, terrified at every moment, which would ultimately lead to the disillusionment of the relationship. Nowadays, I know that reassurance won’t help. It may, in fact, hurt the relationship. Relationships can dissolve at any time, and I have to learn to live with that. It’s scary, but it’s the reality of things.

I started doing this type of exposure therapy, though you really aren’t supposed to do that outside of a therapist’s office. I would record myself saying different scripts, then play them back to myself. Things like, “Relationships can always fall apart. There’s not always anything you can do about it. If it happens, it happens. You’ll have to live with it.” At first, it was quite distressing. I remember crying the first few times I administered that. But then, my anxiety decreased. So now I can deal with similar situations.

I’ve read Freedom from Obsessive Compulsive Disorder by Jonathan Grayson and Feeling Good: The New Mood Therapy by David Burns. I learned Cognitive Behavioral Therapy from those sources, as well as from some of my therapists over the years. It was through the self-help books that I got the most direction in applying those things. I was better able to stabilize my moods, approach different situations, and not make stupid mistakes. I’ve learned to rely on myself to solve my problems, rather than constantly talking to others about them. Because of that, I’ve started cultivating so many more social relationships.

Complicating Self-Advocacy: Twitter and the Romantic Tragedy

I few years ago, I wrote blog posts about my experiences with depression. Nowadays, I don’t write as much, because looking back, I wonder if I was defining myself solely by my depression. In one sense, it was a way to interact with people, because I was getting all this positive feedback. “Oh, you’re so brave!” I liked feeling like that. But now, I worry if it’s a type of emotional manipulation. My father was abusive, and there were abusive elements in my mother as well, and I’d always try to stay far away from that.

I’m cautious of how I describe this stuff, because in the past, I’ve gotten into this sentimentality of, “Oh, if you’re in a dark tunnel, keep going.” I think that stuff has a place, but over time I feel like it’s manipulative. It makes me out to be this romantic tragedy, heroic character, inspirational victim. I see that so much on Twitter. Sad Girl Twitter, Lana Del Rey stuff. I remember when I used to do that, talk about how much I’ve suffered, in order to win an argument or garner sympathy from someone. It was a way to excuse myself, turn a negative into a positive.

Complicating Self-Advocacy: Twisted Codependency

This cushion of support becomes something like the pro-ana movement. Parts of these online social movements become this self-reinforcing cocoon that make you, in a sense, want to suffer like that. Because then you can become a part of that in group. Have that sense of belonging. That makes it hard for someone who starts recovery, because you’re in that in-between area, not able to connect with those old relationships like before but not yet well enough to connect with healthier ones. I remember when I got there, I cut myself off from those old relationships to get more healthy, but then I was so lonely. In order to move from unhealthy to healthy relationships, you sometimes have to move into this “in the wilderness for 40 days” stage, which is scary.

Maybe I celebrated my struggles with depression so much that it was detrimental to my recovery. When I’d post about my symptoms, I’d get so many more likes on Facebook. Did that encourage me to keep my struggles going for a longer period of time? If I’m constantly talking about how I’m feeling suicidal, and people respond positively to that, does that not give me a positive incentive, if only implicitly, to struggle further? It’s a twisted codependency. Do we become complacent with our mental illness instead of trying to remove it?

I don’t want to be thought of as a victim, as this sufferer. I want to be thought of someone with agency. Should I define myself only in reference to my struggles? What does that signal to other people? I’m trying to grow and become stable enough to have functional relationships, so is talking about my mental illness signaling to others that I am dysfunctional, impacting my ability to have those relationships? The thought is that you’re supposed to talk about your mental illness to destigmatize, being open and not ashamed. But we live in a world where people analyze us, judge us. It’s fair to look at someone struggling with mental illness and wonder what that means about your relationship with them, how interacting with them would be. It’s a double-edged sword.

Complicating Self-Advocacy: Taking Responsibility for Our Problems

Suffering can be used as a currency to legitimize our own viewpoints. It can be used to elevate ourselves over other people or shut down opinions. It’s like when Lena Dunham got called out for saying those racist as fuck things about Odell Beckham Jr. Once people got angry, she tried to defend herself by talking about how those were the tools she learned to survive over the years with anxiety. And my response is: okay, that very well may be true, but that doesn’t take away from the fact that you hurt someone else. It’s a diversion away from where she went wrong. It’s an excuse, “Oh! I’ve dealt with shit too, so back off!” A weird defense mechanism. Focusing on our own suffering can be a way to not think about how we are hurting other people.

I think it’s normal to be selfish when you’re struggling. Like, if there’s a tire fire going on in your head, of course you’re going to divert your attention to that. But, like I said with some of these Twitter groups, it gets detrimental and goes too far. Focusing so much on how we suffer can hide the fact that sometimes we hurt other people with our mental illness. We need to take responsibility for that. I had some previous therapists where every time I said I was doing something wrong, they’d say, “Oh, you’re fine!” That made me feel great in the immediate moment, but then I’d go out and the problems would pop up. You need to honestly and soberly acknowledge what you are doing wrong, then work to change that behavior.

Creativity and Mental Illness

I think a lot about the correlation of art with mental illness. I studied film in Los Angeles for two years before I was like, “This is a terrible fucking idea.” and came to Pittsburgh. People talk about how all the creative geniuses had depression or something else. I run into the same concern like with the Sad Girl Twitter stuff. It becomes this thing where it’s a transaction of sorts… you’re getting a benefit from your suffering. I remember I was worried to start taking medication, because I thought it would cause me to lose my creativity. Which is a terribly harmful thing to think!

I mean, number one: if you’re a creative person who’s depressed, then you aren’t making shit, because you’re depressed! They’re laying down, feeling terrible, thinking everyone hates them. And anyways, even if you make better art while depressed, I don’t think it’s worth it. People raise up art like it’s something greater than a human product. People will do all these terrible things in the name of art. I mean, Woody Allen, anyone? But also, it tells people that their suffering is worth it. It becomes this narrative of suffering. Like your eyes are open to how terrible the world is! From the outside it may seem very romantic, very tragic, very real. That dramatization concerns me.

Thoughts on Recovery

I think what a lot of people don’t understand about recovery is that it is hard work. I had to spend years working at this stuff to get to where I am. I worry that some people conceive of recovery as you do something, then it’s a switch flip. Suddenly you’re better! No, it’s more like… I remember reading this book about the difference between good swimmers and great swimmers. It’s not really raw talent, but rather the accumulation of many small behaviors. How long you can hold your breath, the angle of your legs, the aerodynamics of your body. All these slight alterations to do better. Recovery is similar: changing all of these small habits, then seeing an improvement.

It’s like when you constantly ask yourself, “Am I happy? Am I happy?” You’re probably not happy if you have to ask yourself that. I think you really know if you’re doing better if you aren’t thinking about it. Like, you can’t keep asking people, “Hey, is there anything wrong with me? Is there anything wrong with us?” After a while, it becomes annoying, frustrating, and draining.

I’m not sure if I consider myself “in recovery” right now. Am I more competent than I was two years ago? Yes. But am I doing better than I was a year ago? That’s hard to say. I’m doing better this week, but it can easily go back down. I could go down that bad path again… I could regress. I have more skills to deal with it, better access to resources and support. The language itself can never be fully descriptive of it. It’s obfuscating. Recovery isn’t really a permanent thing. There’s never 100% security. I have gotten better. I think that’s a better way to describe where I am than “recovered” or “in recovery.”

On Labels and Diagnoses

I definitely label myself as having autism, but that’s not, strictly speaking, a mental illness. And it’s complicated to say that. To say, “I have autism,” implies that it’s something extraneous from myself, which it’s not. To say, “I’m Autistic,” also runs the risk of implying that my identity is strictly tied to that. In a sense, I think neither phrase does full justice. It’s definitely part of who I am. It’s influenced me. But, at the same time, if someone thought of me in terms of autism, I worry that they would run into these stereotypes. It might not be fully descriptive of how I interact with it, and there’s social ramifications of such a label.

Really, it doesn’t matter how I describe it, the condition is the same. It won’t change the underlying brain structure or how I think. It can become limiting, because it can leave a distorted perception of who the person is by overgeneralizing them in order to conform to a type.

Searching for the Right Therapist

Finding a therapist was hard for me. I had some therapists that wouldn’t help at all, some who would help for some time then become not helpful. I had one therapist who was constantly looking at their phone. I didn’t mention it, because I wanted to think the best of people, but once I left I was like, “What the fuck?” Another therapist, I couldn’t see him anymore, because it wasn’t feasible for me location-wise. I said, “I’m sorry. I don’t think we can do this anymore.” And he was like, “Okay. Take care!” It was so abrupt! He didn’t even make sure I was okay or ask for details.

One of my therapists now is one of those people who will tell you when you do something wrong, rather than make it all seem fine. It’s a huge blessing and such a relief. I hate when I go see a therapist, and they spend the whole time telling me I’m okay. I came here because I think I have a problem, and I want to solve it!

I mention this, because I have a placement with a civil service program where I work with young kids. One kid I work with is from a low income family, and he’s met with a lot of bad therapists. It gives him a very warped and distorted view of therapy in general. He thinks none of them will help him. It’s hard to convince him that he has to keep trying. It’s kind of like going on different dates. Just because you have one bad date doesn’t mean all the dates after that will be bad. You have to keep trying and find “the one” for you.

Final Thoughts

I’m hesitant about being grateful for this experience, because I always think to myself, “if things were just a bit wrong, I might have killed myself.” Like, there are obviously positive benefits, but sometimes I wonder how I could have been different. How my life could have been different if I wasn’t dealing with this. And to a certain extent, it’s a valid thing to ask. But, I’ve thought about it, and after a while it’s not helpful to compare myself to other people or to nonexistent version of myself. Instead, I try to compare it to if I wasn’t around at all. I am here, when I could otherwise not be. And that, in itself, creates value.

Thanks for letting me participate in this, by the way. It’s really wonderful to talk about all this stuff on my mind, and reflect on it. At the risk of sounding vain, looking back at my thoughts on all this, and how they’ve evolved over time, leave me holding myself in high esteem. I’m impressed with myself for how far I’ve come, and how I’ve come to think about these issues. And I really appreciate getting the opportunity to do that.

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4 thoughts on “Interview Twelve: My Illness is My Responsibility

  • In response to the featured question

    Honestly, yes, people will and should judge you to an extent. But, if you’re working towards functioning, recovery, treatment, whatever—I’d say that’s impressive, and anyone who judges you for that wouldn’t be someone to associate with anyways. Keep on doing your thing—it seems like you are doing a good job.

    • Katie,

      Thank you for your kind words. I agree that to a certain extent it doesn’t matter what other people think of me, and that what matters is that I work on my own recovery. At the same time, I think it’s important that I take care not to center my mental illness to my identity, as I have done in the past. My mental illness is a part of who I am, but it means something to express to others, as I express to myself, that I believe I have more to offer the world than simply the ways in which I hurt. That does not mean not talking about my mental illness, necessarily, but about keeping it in perspective, recognizing that my life does not revolve around it, though it intimately affects my life. I have interests, I have beliefs, I have a unique way of viewing that world, and I believe that in order to connect with others and have healthy relationships, I must do so in a way that centers those positive qualities of myself, neither denying the ways in which I struggle nor allowing those struggles to occlude just how much I have to offer as a human being.

  • Thank you for sharing your experience. I love where you are talking about creativity because I think that’s so important. I’m from Cleveland and when I went to the Rock and Roll Hall of Fame the first time I was amazed at how generations upon generations of musicians had died early deaths from drug use. Some people would say those same things you mentioned – how the art they created will live forever, etc. But the fact is its selfish of us to demand entertainment from talented people at the sake of their own self care. It should be their decision how they want to live their lives, not ours. And had they had good treatment – we don’t know could they have made more beautiful art for a longer time. My favorite band that got me through a lot of teenage (and adult!) angst is Pearl Jam – this article interestingly compares them to Nirvana and what they did so they could survive through it all: http://www.smh.com.au/entertainment/how-eddie-vedder-survived-20090918-fuo4.html

    • Thanks for your comment! Here’s a response from our storyteller:

      “Hey Ana,

      I absolutely agree with you that we as a society have a strange set of expectations towards artists, where we implicitly or explicitly demand or pressure for a very high creative output, without taking into consideration the price at which that creative output may cost. And I worry that the lifestyle we expect of them, coupled with the high demand for their artwork, is not one that is healthy for most people.

      Thank you also for sharing the article on Pearl Jam. Their strategy for handling fame I think is an exceptional one, and the fact that they recognized their own limitations I think could have played a big part in them still being around today. I believe that before artists value the satisfaction of their fans or even their art, artist should value themselves. Art can be a wonderful thing. But I don’t believe Art should ever take precedence over human lives.”

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