Life A.D. [After Diagnosis]

  • This SharePost I've titled Life A.D. [After Diagnosis] because it is traumatic when we learn we have schizophrenia.  The diagnosis changes us.  It has far-reaching implications.  The degree to which we give up on ourselves and lose hope of recovering often depends upon how others around us respond to the news.  We need support and encouragement when we are at our most vulnerable.  Too often basic human compassion-the right of every human being-is lacking.


    In reading recent contributions to the Connection by community members, I felt it was time to revisit stigma and its effect on recovery. One woman's young son was shunned by his friends after he had a breakdown. One of my best friend's good friends-all of them-abandoned her when she got sick. In my own life, I'm not foolish enough to believe I could disclose my diagnosis to co-workers should I return to school for a Masters in Rehab Counseling.

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    A NAMI-Staten Island newsletter was devoted exclusively to stigma and its impact on whether someone can recover or perceives he can recover or seeks treatment or tries to better himself. It referred to the April 21, 2009 New York Times article that reviewed a British television show, "How Mad Are You?" The reporter wondered if anti-stigma media campaigns work. On the TV show, people with mental illnesses competed against people who did not have psychiatric conditions to see if a panel of professionals could guess, after the completion of a series of challenging tasks, who was mad and who wasn't. The panelists failed.

    The New York Times article went on to say that altering public attitudes towards people diagnosed with mental illnesses depends to a great deal on whether they receive treatment that works: "Imagine poor psychotic souls cowering in doorways, shuffling along in stinking rags or arguing loudly with themselves in the park. No matter how sympathetic the public may be, attitudes about people with mental illness will inevitably rest upon how much or how little their symptoms set them apart."

    One thing: some of us will talk loudly to ourselves, or wear Christmas coats in August, or do other odd things. I'm not suggesting that everything is under our control and we should conform to society's roles in order to be taken seriously or given compassion. There may be a tape measure we can use to determine how well someone is doing, yet ultimately there is no timetable we can apply to everyone diagnosed with schizophrenia in regards to how quickly we can change our behavior.

    When I was a young woman, I wore theater makeup, imitating the dramatic persona of Siouxsie Sioux, the lead singer of the Banshees, a British band popular in the counterculture. In retrospect, I realized this garish look was symptomatic of the illness and not just a 1980s fashion. I slathered on the charcoal, brown and silver eye shadow, streaked blush across my cheeks, and smeared on crimson lipstick. As I came to see in my late thirties, I hid behind the mask because I didn't want to reveal myself.

  • I was a lot sicker then. I was also in denial in those early years of my recovery. Denial was the coping mechanism I used when the reality that I had schizophrenia was too painful to accept. Recovery is a choice. I was forced to recover when the drug holiday I was on failed. It was then I had to accept that I had SZ, or I would be doomed to making the same mistakes throughout my life. Recovery involves recognizing that you have a medical condition you can recover from. Until you accept that you have schizophrenia your row will be a lot harder to hoe. I was forced to make a decision when the drug holiday failed: choose recovery or choose illness.

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    It was clear to me in that instant what I must do to be able to own my life.

    When I turned 35, I set the goal of becoming an expert on recovery from schizophrenia-and this was four years before I began my freelance writing career. I was willing to risk the stigma because I believed in my vision that people could recover from this illness. I had graduated in June 2000 with my library science degree so I knew firsthand this was possible.

    The NAMI-Staten Island newsletter hinted that because of the stigma, people are afraid to try to get a job or go back to school or otherwise reintegrate into society. So too often they keep to themselves. I realized this was my target market: the people who needed the hope and encouragement to pursue their recovery.

    Self-stigma is the most pernicious form of stigma there is.

    I recently learned my ex-boyfriend discontinued his meds and is actively paranoid and delusional now. He has a Masters degree yet works as a parking lot attendant. Long before he broke up with me I knew he would go off his meds at some point. He didn't believe he needed them; he told me he wouldn't give his children psychiatric drugs. He quoted an article in Seed magazine and interpreted its findings to claim the brain automatically rights itself so no meds are needed when someone first gets sick. The opposite is true: some professionals believe the SZ meds promote neurogenesis-the regeneration of brain cells.

    One day Tom and I were crossing the street and he said, "That woman thinks I'm crazy"-referring to a lady wheeling her kid across in a stroller. He was so stricken with self-stigma that he imagined he was being persecuted. One night he called me up and was excited to tell me, "I'm almost normal now." Normal was the Holy Grail for him. As soon as I was hospitalized again after the drug holiday, normal ceased being something I coveted. I was born with a defective brain whose wiring broke down when I was 22 years old, and I knew that unless I took the medication, it would revert back to chaos.

    Abraham Maslow's concept of self-actualization, at the height of one's development, comes into play. The more we can fully express ourselves and be ourselves without fear of rejection or reprisal, the easier it will be to accept we have schizophrenia. Recovery itself is synonymous with self-actualization. The illness robs us of certain things. Who we were before we got sick isn't always who we are after we're given pills and told to get on with our lives. The diagnosis damages us because we internalize the shame.

  • How can we take pride in ourselves when we've been labeled crazy? By reducing the effect of self-stigma, we actually alleviate stigma from outside sources. We gain this self-confidence when we risk revealing ourselves to others and being in relationships. Developing a sense of self gives us the courage to fight stigma. It's a virtuous circle.

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    Nelson Mandela, who wasn't talking about schizophrenia, nails this best:
    "As we let our own light shine we unconsciously give other people permission to do the same. As we are liberated from our own fear our presence automatically liberates others."

    Shine on, brave friends.

Published On: July 22, 2009