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Personal Accounts: My Sadness Within

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Someone asked me if I could write an article about "closeting." I had made a reference to this in an article I wrote about living with schizophrenia. I thought I could describe the isolation and the futility I felt while outwardly I appeared happy—socializing and caring for my family.

Before the onset of my illness, I had a wonderful support system of girlfriends I was classmates with at Katharine Gibbs School. When we began working in New York, we remained friends and met frequently, enjoying the city's attractions of restaurants and theater. We also went on ski weekends together. Then, in 1964, came the diagnosis of schizophrenia, and one by one my friends left me. I remember I had one friend who tried her best to remain my friend, but she too eventually left. All my friends left. I had my family, and that was it. It was then that I began the "training" for my marriage years and closeting my illness.

I should mention that there was only a three-year period from the onset of schizophrenia to the time I got married. Looking back, I know I should have waited longer. It was too soon to take on the responsibility of marriage while learning coping mechanisms to deal with my illness.

In my marriage, when I was very happy about something, it raised concern in others that I was too "wound up" and possibly getting sick. When I was angry, it was suggested that perhaps I needed to call the doctor to make sure I was all right. If I was excited about something I wanted to try, I was asked if I was taking my medication. With our friends I sat quietly and listened to jokes about people with mental illnesses. There was no doubt in my mind that if any of these people knew that I was living with schizophrenia, the friendships would end as they had with my Gibbs friends. Therefore, I remained closeted.

I think the human mind is extraordinary. While I was closeted, my mind would question, gently at first, the lie I was living—being liked for who I appeared to be and not who I was. I wanted to be liked for myself, for my whole being, including my illness. I also believed very strongly that I could write. I had some success with poetry writing and wanted to expand to writing about my illness. Persons close to me did not think this was a good idea because others would then know that I dealt with schizophrenia. I would try to say "It doesn't matter." "I am not ashamed I have an illness." "It is an illness, not a terrible secret." This was during the 1960s and 1970s, when people kept their mental illnesses secret because of the almost overpowering stigma.

During my childhood, my mother taught me self-reliance and independence and how to deal with adversity. She was a divorced Catholic woman with two small children during the 1940s and 1950s. My mother faced many hardships, but she knew pride because she fulfilled her obligations. I saw this in my mother for many years, so for me to leave the security of my marriage was not as unthinkable as it would have been to someone who had never known adversity and independence in their growing-up years.

Finally, the gentle thoughts of leaving my "shell of security" became very strong, and I felt I had to end the marriage and try to build a life I wanted, which I felt I could not pursue while married. The need within me to be who I was and who I thought I could be was very strong and getting stronger. Think of the time when many gay persons decided not to continue to hide their sexual orientation. They wanted to be themselves and not feel shame. That is similar to my deciding to try to build a life based on my whole person, including living with schizophrenia. I needed to embrace life. I needed to pursue the person I believed I could be.

I believed in myself, which is probably the most important ingredient in my decision to leave the security of my marriage. Another important factor was that I never felt shame about my diagnosis of schizophrenia. My mother also believed this and felt no shame that her family member had schizophrenia. I coupled my mother's opinion about my illness with my own belief, which created a very strong foundation for my desire to build a life independently. No longer did I want each day to meet with "close friends," persons who shared intimate parts of their life with me, and know that if the same persons learned that I was "schizophrenic" the warm friendships would dissolve, as had happened during the onset of my illness. I had seen that, except for my immediate family, people were afraid to be with me alone.

I would not be invited to gatherings, even when my family was. Again, my mother was a wonderful teacher to me. When invitations came to our family and I was excluded, my mother would tell the person that if her daughter was not welcome then she would not attend. This was an invaluable example for me. To this day, I think about my mother's examples and how they apply to my personal life and to my work in the mental health field. I instill hope and I support as strongly as I can a person's growth when the person has been shattered by the stigma of mental illness.

After I left my marriage, with custody of my children, many years of good health continued. Our life was very happy. As a single parent, the experience of guiding my children through their formative years with the strong ideals and values that I had been given by my mother was wonderfully fulfilling to me. My children adored me and I them. We did not have a lot of money, but we did have money for treats, birthdays, short vacations, and of course for necessities. I think these years were some of the happiest of my life. My children were growing "straight and tall" inside. Their friends loved coming to our home because I cooked very tasty dishes, which were also nutritious. In the 1970s, I still baked bread. During this time, I took my medication, saw a psychiatrist who also believed in me, and tried to limit stress in my life. Overall, life was very good. It gave validity to my decision to leave my marriage.

I did have one severe setback involving homelessness many years after leaving the marriage, and my life changed again. When I regained my health, I decided to speak openly of schizophrenia. People responded to me and to what I spoke of. I was making a life that I wanted—to be whole, to incorporate the illness into my life, and to be respected and, I hoped, liked for myself. I became very active in the mental health movement by committing to speaking engagements, writing articles and many letters to newspapers, and sitting on committees and boards for many years. I should also mention that in the 1980s I was one of the first consumers to be open about my illness. Stigma was still prevalent, but for me I embraced talking about schizophrenia for the purpose of educating others about the illness.

I also gained friends who knew that I dealt personally with schizophrenia, and it made no difference to them. Many of my friends are individuals involved in the mental health movement, but I also have a number of friends outside the mental health community who respect me and who I know try very hard to overcome their fears of being with someone with mental illness. Since I became open about my illness, I have met more than a few people who still think of me as "schizophrenic" and who are openly biased against me. I have chosen not to try to change their minds because I probably can't. I choose to avoid them. However, if I find discrimination in areas in which I have legal recourse, I will not tolerate it and will pursue legal channels. My premise for many years has remained the same: I have an illness, and I have no shame about my illness.

Today I understand about my friends' ending their friendships with me. I think they tried to understand but couldn't. About my husband, I know he was trying to safeguard against my getting sick, as were my other family members. However, this closeted lifestyle was suffocating to me because of my upbringing—having been taught to live to your potential, follow your dreams, and live so that you are always proud of yourself.

Yes, I took a risk, but I have realized the fulfillment of many dreams. Slowly I built a good life. My writing to this day remains very important to me. For the past nine years, I worked in peer outreach positions, mentoring and giving supportive counseling to other persons who have mental illness. I have received the credential of Certified Psychiatric Rehabilitation Practitioner, and I use many of the values of this modality in both my personal and professional life. I also rely strongly on life's values, such as kindness, self-worth, and serenity.

Eleven years ago, I founded a 501(c)(3) corporation with the mission of advocating for mental health issues through education. This corporation is not only successful but is continually evolving and growing. I also commit to many speaking engagements, incorporating my own recovery with a message of hope. My work has been very fulfilling to me. I am the whole person I needed to be. I have incorporated the illness into my being, and it is only a part of my life that needs care as other parts of my life do.

To close, I should say that taking the chance I did, giving up security, is not a road for everyone. It had turns, and a person has to weigh what he or she wants. I have attained serenity, some success, and the fulfillment of being who I am. I am at peace with my decision.

Ms. Fox is a writer and peer support counselor. Send correspondence to her at P.O. Box 87, Morristown, NJ 07963. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.