I am in recovery from “mental illness”. I’ve always felt that the typical professional services were unable to provide the relief I needed. When I re-entered the workforce I focused my energy on these limitations. I became a peer specialist-a person in recovery trained in supportive counseling and advocacy. I also began earning my master’s degree in psychiatric rehabilitation, a field dedicated to the idea of recovery, and which takes a more holistic approach. I’ve become a constructive critic of the mental health field and found that these ideas already existed on the fringes. They continue to gain momentum and I’m excited to advocate for them.
Recovering from mental illness isn’t easy, but it is relatively straight forward and it’s not hopeless. I’d like to share my story to illustrate how the basic idea can be put into practice by anyone. Recovery is adapting to how your brain works. You accept how it works, observing what makes it worse or better, and learn to navigate the triggers and symptoms you experience. As you do things differently, these ‘corrective experiences’ begin to undo the negative beliefs you have internalized. It’s a long haul and takes commitment, but can lead to real and lasting returns. In many ways it isn’t significantly different from the formula that the anonymous groups use to overcome addiction.
My story may help illustrate this. It starts with two diagnoses- ADHD and Borderline Personality Disorder. They ran my life ragged and by 24 I was lost, hopeless and desperate. But over the next few years I addressed my attention problems, paralyzing anxiety and complete inability to love myself.
I grew up in an affluent, happy home and community. But nothing seemed to work out for me from the very beginning. I learned that I had ADHD. I couldn’t control myself, and was always told that I should be able to calm down, take ‘no’ for an answer, and be patient. But inside, I knew I couldn’t do these things. My parents yelled at me, my sister and her friends made fun of me. I was kicked out of preschool; they called me “spaz” throughout grade school. I found that I was willing to do anything for approval. I figured out later that approval, and the acceptance it implied, was the single most important thing in the world to me and that I’d do anything for it. This is known as Borderline Personality Disorder. As I entered high school I stopped showing pain on the outside. I learned how destructive it was for me to let it out, so I swallowed it, doing anything to appear ‘normal’ and letting the raging pain crush my spirit. This led to a diagnosis of depression. Of course, it was far more complicated than that and being told that this was just a chemical problem was deeply invalidating.
Upon finishing college there was so much noise in my head that I couldn’t hear anything else. I discovered drugs and alcohol and became a full-blown addict. I found a girlfriend who gave me approval and we became incredibly co-dependent and unhealthy. Eventually she pulled away. As she got better I grew worse. Her acceptance had filled the hole I’d been buried in and as she put distance between us I got into heavier drug use. I developed extreme grandiose delusions of who I really was to compensate for how little I really had. If you didn’t understand me it was because you were captured in the cultural norms of our society. You were trapped in the old paradigm, and I was here to change it… somehow. This led to another diagnosis: Schizoaffective Disorder. Of course, it wasn’t. It was my attempt to lie to myself to avoid the pain of my reality. Being told that it was another chemically-based problem and that I need to take my meds was another wound. Have you ever felt that you were screaming for help and no one could hear you? It’s frightening.
I got worse. They started showing up with the ambulance more and more, locking me up again and again. I was told how ‘sick’ I was. But my inner experience couldn’t be denied. Who can deny their own experience? So I resisted this ‘hard sell’ that I had mental illness and just needed to trust these experts, because it threatened my understanding of myself. By trying to tell me what was wrong with me instead of listening to me, clinicians drove a wedge between us that kept us from working together. This isn’t something that I experienced with all clinicians, but it was the norm. I remember five professionals who I felt could understand or were willing to try. But in my 20s I was under the care of no fewer than 40 doctors and therapists.
My turning point happened unexpectedly when one day I had my own insight. I was sitting with people around a table at a bar and I’d been speaking for at least 15 minutes- talking at them, not with them, and I did something I’d never done before… I looked at their expressions and could see that they were miserable. They wanted me to be quiet. They hated what I was doing. And it hit me: I’m terrible at this. I don’t know how to read other people’s expressions. I don’t know how to interact!
I shut my mouth that night and didn’t speak for the next 10-12 months. Instead I watched. I chose people who were succeeding inter-personally and I watched every move they made. They said something, kept it brief and light, then they listened! Their responses were short and they kept the conversation going in a positive, pleasant direction. Then they listened again! I started to learn. Of course, you can imagine how family and doctors reacted to this strange silence. If only I could have told them that I was inside doing something productive.
During this time I recognized that my inability to pay attention was tied to my ADHD and that if I could learn to focus, I could have a chance at making progress. So I went to the hardware store and bought some wood and nailed together a small balance beam, about 3 feet long. I stood on it for about an hour a day for a year. I fought to stay on that balance beam because, while I was focusing on maintaining my balance, my mind had to stay in one place. At the end of that year my ADHD was all but gone. My parents, however, who love me very much, found these behaviors so disturbing that they had me committed several times.
Regardless, I made fantastic progress with these two strategies. But my social anxiety was paralyzing. I was living with a friend at the time but stealing my brother’s keys to sleep in his car so I could avoid my roommate and I desperately wanted that to end.
So I chose a coffee shop and said ‘One day I’ll feel at home in there.’ The first day I walked towards it and stopped a hundred yards away when the panic started and I congratulated myself on my effort and turned back around. The next day I did the same thing. By the end of a month I could stand inside the shop for a couple of minutes. At the end of the second month I could order coffee. When I could do that I said “OK, next you’re going to say something to the barista when you order your coffee.” It was all progress and I made sure to praise myself for each tiny increment. What I said got better. I started making eye contact. By month 3 I could sit with a book and drink my coffee, but I was tormented by the certainty that everyone was looking at me. So I started checking. I watched the guy in the corner. He was reading a book, the couple next to him were deep in conversation, the four people on the couches were working on something… these people weren’t looking at me. I learned later that this was called Reality Testing. I still do it today. Slowly I learned to practice the skills I’d learned by watching people interact. I don’t think I annoy people when I interact with them anymore. I may be imperfect and sometimes awkward, but overall, that mountain is now a molehill.
When I got to New York and walked the streets I thought I’d feel free to practice what I’d learned. I expected to be excited to see the results of high functioning. All the same, the strangest thing started to happen: with nobody around to place me in the box I’d left behind, I allowed everyone I spoke with to be a surrogate for people from my past. I’d internalized a lifetime of criticism and learned to self-stigmatize like so many other people who get unsupportive feedback for their idiosyncrasies.
I carried the damage of the feedback I’d received and transferred it onto every situation. I told myself I was awkward, so I acted stiff and uncomfortable. I told myself I was oblivious, so I second-guessed myself constantly. It became easier to be alone, without triggers to invoke the traumas I’d suffered earlier. In the end, I found myself back in a state of psychological distress, paranoid, depressed, full of anxiety and turning to alcohol to cope. Yet it never escaped me that the root of this problem was in my own mind, that it only existed because I’d learned to see myself as ‘ill’ or ‘dysfunctional.’ That, in the end, I couldn’t love or accept myself, which is the root of any personality disorder. When you aren’t accepted as a young child, you learn strategies to get the acceptance you need. You learn to hide, to lie, to be the aggressor. These skills become part of how you learn to survive and they outlast childhood and become a trap you can’t escape.
Learning to love myself was something I didn’t know what to do with, but I was lucky to get just the kind of help I needed. I had a second life-changing experience in 2009. I had a powerful breakdown, one that would have left me hospitalized and confused. Luckily I was a student at Howie The Harp Peer Advocacy Center, a Peer-training program. I thought they’d kick me out, because I’d flown into a rage and was screaming at everyone. But some of the staff pulled me aside and asked me what was wrong. I threw everything I had at them and when the smoke cleared they were still there, looking with concern and compassion at me. They said ‘That’s great stuff. What else?’ So I yelled some more. They said ‘Wow, we’re hearing a lot of pain. What happened to you?’ It began to hit me: we’d been at this for over an hour. They weren’t checking their watches or losing interest. Their support was unconditional. Long ago I’d learned to believe that I could only be loved if I acted ‘worthy’ of love. That I wasn’t allowed to be myself. But here I was at my worst, and they were still here. Trust happened, vulnerability happened, and my walls of anger melted into a river of pain. The crying started then. I’d never cried to anybody. They stayed with me all the way through it, then gave me their home phone numbers. I called one of them that night and she was there for me, and I hardly knew her! They stuck by me for about two weeks, listening. This experience was the beginning of my healing. They made me feel that I was worth loving and that let me believe that I might deserve it.
The most important kind of help I ever received was relationship-based. The people at Howie the Harp used a technique called Active Listening and offered Unconditional Positive Regard. They gave me a start on loving myself. From there I took the responsibility of finding people I could trust and to use the skill I’d learned at reality testing to correct myself whenever I began to feel those old feelings. I started with a family member and eventually built a small community whom I trust. We care about each other. They allow me to check in with them whenever I need to and that helps me steer clear of old and painful emotions.
Each of these healing experiences was an adaptation to my challenges. The balance beam, the reality testing, the building of community and supports. Learning to accept that my mind will take me places I don’t want to go if I allow it to. These are just some of the tools I use in my recovery. They’re adaptation. I accept that I’ll always have doubts about my worth, but I recognize those doubts and address them. I accept that my attention may get swept away at any time but I catch myself faster and faster. This journey of acceptance and growth is recovery. It starts with acceptance that your brain is a little different and the desire to do the work to learn to navigate it. Success comes of patience, resilience and self-honesty. I still use medication and therapy, but as tools, not solutions. I think of my providers as consultants in my journey. Some have taught me a great deal, but the responsibility to steer is mine and those who’ve truly helped me respected that belief.
The recovery movement goes much further than this and has more to offer than you may be aware. This is simply an introduction. Nobody is hopeless and we can all do better than basic maintenance. Good luck, you’re worth it.
Mat Costanzo