I claimed recovery from schizophrenia in 2011 when I completed my peer-specialist certification. The two-week training was liberating. I learned — along with Wellness Recovery Action Planning (WRAP) — that I owned my recovery. That is, people telling me you must do such-and-such to stay well — take your meds, exercise, and eat healthily — were all good suggestions, but if I did not decide these things myself, then the suggestions were pointless and ineffectual. It is easy to tell others what to do and listen to what others say. But it is much more meaningful to make up your own mind and execute tasks you know will foster your recovery.
This attitude was in strong contrast to my life before becoming a peer specialist. Previously when I needed help, I sought it at the local clinic. They were the experts. They were in charge. I was desperate! So I did what they told me to do, thinking they knew best. They said take your medication, so yes, I took my medication. They said to go to groups, so yes, I went to groups. What they said, I did, but I was not necessarily feeling better or getting better. That happened when I liberated myself from their charge. Empowered myself and took my recovery into my own hands. That’s when my life became real again. Yes, I became a human being with dignity and self-respect, able to make choices for myself.
I was now in charge of my own recovery. Working with clinical staff and doctors was a negotiation, and they respected the fact that I could advocate for myself. I knew myself the best. I knew what I could and could not do. I knew what I wanted and knew what I did not want. For example, if the therapist said: “Why don’t you try yoga?” I would reply, “That sounds like a helpful activity, but I had a traumatic experience with a yoga instructor before and it is something I’d rather not venture at this point.” Therapists mean well, no doubt, but they don’t know a person’s complete personal history. Self-advocacy is essential to make your choices known and to bring about a recovery that makes sense to you — and that means being trauma-informed.
Soon after I was certified as a peer specialist, I started working in an agency supporting others in their recovery. This was both a step down and a step up from what I had been doing two years earlier. I had been a salaried instructor of history at a college, teaching a full course load. I was satisfied and proud of my professional occupation. Now, working as a peer specialist, I learned humility — about my status and in other ways — but I found great joy in the act of human service, helping others who were not so different from myself. I worked the job with enthusiasm while learning how to engage and interact with all sorts of individuals and situations, in times of crisis as well as at moments of success and happiness. I eventually got promoted to supervisor and was able to instruct and guide other peer specialists to make a positive difference in the lives of others.
Faltering, Then Bouncing Back
My life was not always an upward swing to greater recovery. During my work as a peer specialist, I took a vacation to Finland to visit a friend. I looked forward to my planned trip but, once en route, the time difference and the stress of travel hit me in an unexpected way. Psychosis set in and my voices came back, along with delusions — nothing grounded in anything but the intangible. When I returned home I checked into a psych ward, where they increased my med dosage to settle my nerves. This was the standard procedure (hospital compliance). There are few options available when psychosis comes on, and yes, more humane choices, such as respites or other alternative services, need to be put in place.
Nonetheless, the human mind and body are resilient — recovery is, in effect, resilience. I have gone from full recovery back to psychosis only to bounce back to full recovery again. Recovery is not a bridge we cross and never return to. Rather, it is more like fording a stream by side-stepping on different stones. Not all of the stones are as sturdy as some of the others. Yes, we slip at times, only to regain our footing and forge ahead.
After my relapse and treatment, I returned to work and slowly readjusted to the routine. My supervisor was a compassionate man who understood my need to ease back into the job. Soon I was at full strength again, pulling my weight and achieving optimal productivity.
In 2015, I accepted a job at Creating Increased Connections, and got involved with the Montgomery County Hearing Voices Network (MCHVN). This was an important move for me. I was a voice hearer, but at the time hesitant to be open about that fact. Through the help of the network and working as a group facilitator for voice-hearer support groups, I was better able to understand my experience and to feel less and less stigma. In understanding hearing voices not as a symptom but as an experience, I was able to overcome feelings of inadequacy and less-than. I could openly admit I heard voices, but I was still in charge of my person. The voices did not control me. I had taken back the power the voices once held. Now I could negotiate with them. Respect them, but also have them respect me. Voices are real: I hear them, and if they say go to the door, I must decide and respond to the voices’ comment. They affect me and I affect them.
Upon further thought, I realized that my voices represented trauma in my life. My voices were representations of conflicts I have carried with me since I was a child, echoes of various traumatic events. This insight fundamentally transformed the way I heard my voices and responded to them.
My career continued, but not without further psychosis. Yes, once again, a psychotic moment appeared. Voices overtook me even though I knew they represented past and unresolved conflict. The speed and intensity of the psychosis did not permit me time to reflect and evaluate what was going on, to connect them to the prior conflicts seemingly etched into my psyche many years before. It was only with time, patience, and more time that I could clear my head. Finally, the inanity of repeatedly thinking thoughts that had no anchoring in objective reality made me realize the truth. A truth that struck like a bolt of lightning and returned me to my senses and back to sound mind. I am resilient, I concluded.
Where I Am Today
In retrospect, my life has ebbed and flowed between recovery and relapse, hope and struggle, but with support and understanding, I have healed more than once. I look forward to sharing my story of resilience as a peer specialist. I have presented and held many trainings on hearing voices, developing the curriculum to suit varying audiences. I also became an Intentional Peer Support (IPS) trainer and have successfully presented the five-day core curriculum on multiple occasions. I hold high hopes for the IPS curriculum, believing that it can help transform peer support toward more equal relationships beyond the strained power dynamic of quasi-medical peer-worker and peer-patient.
I am also an Advanced Level WRAP Facilitator, and I find the WRAP tool so valuable that I staunchly advocate that all should learn it. Finally, I have been trained in understanding trauma, and strongly argue that trauma be evaluated along with any diagnosis in the Diagnostic and Statistical Manual of Mental Disorders (DSM).
I know acceptance is my primary need. I need to accept myself for who I am, but I also need to feel acceptance from those around me. My experience has taught me that stigma is real. If people stay in the dark about psychosis, believing that it is chronic and increasingly debilitating rather than something individuals can and do recover from, this heinous stigma will continue. Recovery will only become more of a challenge, compassion will decrease, and marginalization will increase. There will be more barriers to acceptance and inclusion in greater society. Therefore, it is imperative to educate others about the myths and to demonstrate with the living proof of people like me that we can recover and lead phenomenal lives. I am open about my recovery for this reason, and I hope others will find the courage to share their journeys when the time is right.
I am not alone. You are not alone. We are not alone. We stand together!
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.