Learning to Accept Your Illness
By Richard Weingarten, M.A., CPRP
Overcoming self-stigma by way of finding my voice was a journey that took many years. When I was first diagnosed, I had internalized the stereotypes most people have of people with mental illness. Namely, that we are violent, dangerous, unpredictable and incompetent. I also felt “less than” than my college classmates, who had already launched into careers, married and started families. At a deep level I felt that I couldn’t hold up my end of the conversation with them.
A good friend from the Peace Corps helped me stop comparing myself to my classmates. “Life is not a game,” he wrote. “You’re not in competition with these guys. If you’re in competition with anyone, it’s yourself.” I took my friend’s wise counsel to heart and resolved to play the hand I was dealt.
However, until I felt better about myself I fell victim to stigmatization and self-stigma that was really self-contempt. I remember a girlfriend visiting me in a mental hospital in California. She was quite nervous and fidgety and kept looking at her watch. When it was time to say goodbye, she told me “I don’t ever want to see you again. You have no future.” Her words hurt a lot but I half believed her and said nothing. I never saw
I was reluctant to go to meetings of the returned Peace Corps volunteer group I belonged to. I feared a jerk in the group would pick on me, and I wouldn’t be able to stand up for myself. Before each meeting I engaged in an all-too-common push pull debate with myself. Should I risk leaving my apartment and being humiliated at the meeting or should I stay in, withdraw back into myself, where I knew I’d be safe and warm? As my confidence grew, I increasingly risked more social involvement, but this took several years to accomplish.
A skillful therapist helped me find my writing voice when I first went into therapy. He knew how proud I was working as a wire service foreign news correspondent before I became ill and encouraged me to keep a journal. Several years later I sent him a discharge handbook that I compiled with other people in recovery in a self-help group. He wrote back that it was professional looking and suggested I become an “information giver” to individuals with mental illness and the general public. With this valued social role, I went on to compile two more service directories in Cleveland, Ohio. I took the therapist’s suggestion and began speaking out and writing on behalf of other consumers.
My life began to have purpose and direction again. I read books and articles on stigma, including Erving Goffman’s classic study, Stigma: Notes on the Management of Spoiled Identity. Another book, The Body Silent, by Robert F. Murphy, an anthropologist who was stricken with cancer of the spine, made a big impression on me. Murphy’s book taught me how chronic illnesses do much harm to one’s self. In numerous ways I tried to heal my damaged self, i.e. express my anger, raise my self-esteem, join advocacy groups, etc.
I began going to the Unitarian Society of Cleveland. The chair of the Worship Committee asked me to tell my story of illness and recovery at a Sunday service.
Nervous and fearful of being rejected, I gave the talk and to my astonishment and relief each person in the congregation lined up and down the center aisle and came up to shake my hand and thank me for sharing my story. At the Society’s Fellowship Hour I relearned valuable social skills that I had allowed to atrophy as a result of my reclusive lifestyle. A psychologist and professor at Case Western Reserve University, who was at the service where I told my story, invited me to speak to his Family
Therapy seminar for Medical School residents. This boosted my self-esteem as the
residents were interested in my experiences in treatment and how my life improved in recovery.
I started to look for other opportunities to tell my story. I got invited to speak at the social service agency, where I worked as a Mental Health Outreach Worker. I was fearful that if I didn’t speak like Mario Cuomo, then-governor of New York, my audience would walk out on me. I pushed through my 40 minute speech and no one walked out. Still unsure of myself, my consumer friends came after the talk and said that I had done a good job.
My psychiatrist at that time encouraged me to submit an account of my illness and recovery to “Schizophrenia Bulletin,” a prestigious journal. I did and it got published! Wanting badly to improve my writing, I began sending my articles to a New York writer and editor who co-authored books with a cousin of mine. I successfully published a few more articles under her tutelage and began to have a national reputation for writing about my recovery. My self-image and self-esteem started to blossom.
I began making better choices all around. For more socialization I frequented a peer-run drop in center on Cleveland’s East Side near where I lived. Just talking with other persons in recovery about our lives with mental illness was a normalizing experience for me, and led me to fully accept my illness. Later, when I experienced a bout of depression, I joined a Mood Disorders Support Group at University Hospitals. As I got to know other members of the support group, I saw how my comments were helpful to them. Gradually, I took on a leadership role and co-facilitated the weekly support group.
I felt much better about myself after these social involvements. I decided to test myself outside the mental health community. I began teaching Portuguese and Brazilian culture at John Carroll University. While I often felt depressed during my early morning classes of 40 or more students, I managed to push aside my depressive feelings and deliver the lectures. I also stopped being a perfectionist and began to enjoy teaching and my students more.
College teaching was the achievement of a lifelong dream. It gave me the confidence that I needed to work full time again and gain financial independence -- two important, long-term goals. I embarked on a two year job search that landed me in New Haven, Conn. at the Connecticut Mental Health Center as Director of Peer Support.
Working every day at a job I loved further boosted my self-confidence and sense of accomplishment. Successfully introducing new peer-run services affirmed my ability and vision to help other persons in recovery. No longer troubled by self-stigma I began testifying at the legislature in Hartford on behalf of consumers and their families. A colleague and I started a speaker’s bureau and went around the area speaking to high school, college and university students about mental illness, stigma and recovery.
I was chosen to be on the Board of Directors of NAMI Connecticut. In 2002, I brought a NAMI national video program, In Our Own Voice (IOOV), to Connecticut and trained 15 people in recovery to tell their stories in conjunction with the video. The first year I did 25 IOOV presentations and got over my fear of public speaking. At first, I wrote out my parts and read them, then I made notes that I referred to when speaking. Finally, I did away with notes altogether and just gave my talk as it came to me. Our team did more than 100 presentations around the state the first year, and paved the way for integrating persons in recovery into NAMI Connecticut. I was awarded the “2003 Stigma Buster of the Year” award by the Connecticut Department of Mental Health and Addiction Services, NAMI Connecticut and the Psychiatric Society of Connecticut.
Since then, I’ve been invited to tell my story at conferences and meetings around the U.S., Canada, the Netherlands, Israel and Brazil. I get great pleasure and satisfaction tailoring my story for the diverse audiences I present to. In recent times I’ve given workshops on stigma and self-stigma at home and abroad. I was invited to give a keynote address on “Overcoming Self Stigma” at a conference in Utrecht, Holland in October 2011.
I realize that my path for overcoming self-stigma was based on my writing and speaking skills. Everyone must find his/her strengths to deal with this problem. A friend of mine in recovery told me that she had to stop blaming herself for her illness and learn how to accept the help, support and praise offered to her. When she went back to work, she was able to call on the skills as a licensed family counselor she had before she became ill. An African American friend told me how she works out two hours every morning to get rid of the anger she feels. She said she walks a fine line between withdrawing from interpersonal contact and accepting the help and support people give her.
Unfortunately, stigma and self-stigma aren’t going away anytime soon. I’m committed to educating people in recovery and the general public on the very real problems of prejudice and discrimination brought on by these stigmas. Too often people’s life opportunities are denied them because of discriminatory behavior fueled by stigma. The good news is that people do conquer stigma and self-stigma. I use myself as an example and say to them, “I no longer worry about holding up my end of the conversation!”
Richard Weingarten is president of Forward Spiral Associates and is a member of the NAMI Connecticut board of directors. He can be contacted at firstname.lastname@example.org