Me, My Thoughts, and I
Even More Mental Health Stigma (and discrimination)
My first memory of mental health stigma is related to one of my first memories period. I remember sitting on my bed at night, talking to my mother. I was maybe 3 or 4 years old. I remember telling her that things weren't as good as they used to be. I told her that I used to be happy, but I wasn't anymore. She asked when I was talking about, asked when I was happy. I told her that I remembered being happy when she and I planted an apple tree in the front yard of the house we no longer lived in. She was amazed that I could remember this, I was very young when we moved from Cincinnati Ohio to Huntsville Alabama where this was happening. The next thing I remember was my father joining us. I don't remember the rest of the evening after that.
What I do remember is going to a child psychologist. I remember going in the front door and seeing the reception desk on the right, looking to the left and seeing some couches and coffee tables. I remember looking behind me and seeing the door we had just come in through, and asking my mother why I couldn't see through the frosted glass windows on either side of the door. She said, "Jim, some people don't like being seen at this kind of doctor." My first taste of mental health stigma, aimed at myself, when I was less than 5 years old. But was it her stigma, or that of "some people?" Who knows? Later when I was diagnosed with bipolar (35 years or so later), she refused to accept it. It must be a mistake she said. It couldn't be.
Then I remember being in the doctor's office. There was a huge pile of toys in the corner. He told me I could play with them. This was during the Vietnam war, I was precocious, and knew all about war protests and the peace movement. Being precocious, I remember knowing that he was evaluating me, and I didn't want to look bad. I looked at the toy guns, but resisted playing with them to avoid the appearance of violent tendencies. He noticed this and told me it was OK to play with the guns, so sheepishly I did. I remember thinking that he was pretty perceptive.
The next week we had a family session. My mother, sister, and I went into the office. The doctor asked, "Where is his father?" "He doesn't believe in this sort of thing", my mother said. We never went back. I wonder if this had something to do with my father "not believing in this sort of thing", or something the doctor told my mother. Back then there was a belief that the family, most often the mother, was responsible for causing mental illness in their children. There were terms like, "Schizophrenigenic Mother", and "Refrigerator Mom." Parents were told that the very best thing they could do for their kids was to leave them and never come back. Understandably, many parents did not accept this. Was my mother one of them? Kudos to her if she was.
There is a NAMI (National Alliance on Mental Illness) video called, "When Medicine Got It Wrong" about this. Not coincidently, the video is about the formation of NAMI (in 1979) by parents of children with mental illness who were sure they had not caused their children's mental illness, and who were fed up with being told that they had. Well, they were right, and in a large part, we owe the modern view of mental illness to these parents from NAMI (back then, since there were more women than men in NAMI, they were called the "NAMI Mommies" :-) )
A few years ago I asked my sister if she remembered any of this. She didn't remember a thing, she said. She is a year and a half younger than me, so that's not too surprising. I never asked my mother when she was alive, she had such strong emotions about my mental illness. I haven't asked my father, he is still alive, I'm afraid of the memories it might bring up, as he's been telling tales of his childhood, for the first time in my life and they aren't happy stories.
Since all this happened I have learned that, during the '50s, my mother regularly drove an in-law, a cousin of my father, to her psychiatrist. She mentioned how horrified she was by the effects the meds had on her personality. She was a zombie. She later tried to kill herself in a horrific way. This cousin-in-law was diagnosed with manic depression, what we now know as bipolar disorder. Did this affect her decision to take me back to the doctor? Did it lead to her not being able to accept my diagnosis with bipolar, years later? It's hard to say. She died eight years ago, and would rarely talk about the subject of mental illness in the family. While I only know of one of my father's relatives who had a mental health diagnosis until he was diagnosed with depression fairly recently, it has been fairly obvious to me that other people in his family might have had bipolar. As well as the depression disorder, I can remember his possibly hypomanic energy when he was younger, and his OCD symptoms are far more obvious than mine. Interestingly, "Monk" is one of his favorite TV shows, and he never seems to have made the connection. That we know of.
This all happened in the '60s, a time when there weren't too many medication options for mental health treatment. There were first generation antipsychotics, which likely was what my cousin took. There was lithium, but from some articles I read, it was not in widespread use until the early '70s, and until fairly recently they used large doses that had nasty mental clouding effects. "Cotton in the brain", I've heard it described as. I doubt that they would have used any med on a 4-year-old, it's hard to say what sort of treatment that I would have gotten in the '60s, '70s and beyond. Depending on what that treatment would have been, perhaps it would have been worse than the results of waiting until 2001 to be diagnosed, despite how bad it got at times before then. I think some time at least a bit earlier would have been better for me...
Well, this is getting very long, so I think I'll just add one more experience, much more recent.
At my last job, the one I was working at when they sent me to the mental health center to be assessed (Thank you Mike and Dave!), I used to do computer support. One of the things I did was computer forensics when sensitive information was involved. Read, "An employee was accused of having porn on, or viewing porn on a company computer." In a large company, this came up more than once. A lot more than once. I, and another employee, worked closely with the head of HR in cases like this. We always got along well, and I assumed that he respected and liked me.
Then it changed. I went inpatient for the first time after becoming suicidal (first time inpatient, the first time suicidal happened when I was about 12 years old -bullies and depression, which had not gone away) (Thank you, Mike and Chuck, for getting me to the hospital). I went back to work after hospitalization and partial (several weeks of 1/2 day of therapy) and resumed my duties. Time passed, and a point came when I needed to see the head of HR. No big deal, I went to his secretary and asked if he was in. She asked him on the phone and said to wait a minute to see him. I waited for a while and an armed security guard came and took me into his office, never getting more than a few feet from me. To say the conversation was strained would be a huge understatement. To this day, it has been the most infuriating and embarrassing example of mental health stigma I have encountered. I suspect it lead to the breakdown and multiple hospital stays that wound up with me leaving on disability in 2006, 10 years ago to this month.