There’s another social media campaign to #EndTheStigma and you’d think I’d eventually learn not to engage, but I’m nothing if not stubborn, I guess.
Since someone always thinks I’m personally attacking the way they live their life, let me preface by saying that if you’ve had unqualified success with a medical treatment model, you can maybe just skip this and pretend I didn’t say anything. This isn’t aimed at you.
OK now that that’s out of the way: first, I have seen very little evidence that there is any stigma left around seeking drug therapy for mental health issues. Everything I’ve seen in the past few years is incredibly supportive of the idea that if you are suffering, you should totally go get help, take your pills, it’s a disease dontchaknow. Even within the recovery communities I’ve seen, people use clinical terms and discuss the drugs they still take. Even some of the most hardline antipsych activists I know will still use diagnostic language.
Here’s my gripe. There’s still stigma that doesn’t have a catchy social media campaign to end up. With all this encouragement to Go Get Help, there’s a pretty large number of people who will end up receiving medical treatment for a disease they do not have. Diagnostic criteria for mental health conditions is scarily fast and loose.
We have removed stigma from depression but not from sadness. From anxiety and panic but not worry and fear. And as a result, there’s not much help for people who have strong emotions and difficult circumstances.
When I was a teenager, I was sick for a year and came out of it very sad. I went to the doctor and was told I had clinical depression, and took Paxil, which has the side effect of murderous rage in some teens, and was told that rage was mania, which meant I had bipolar disorder, and the bipolar drugs I took killed my impulse control, which led to me getting into a horrible traumatic relationship, which led fear incursions, which netted me a prescription for benzos, which put me in a dreamlike state, which resembled waking dreams, which I was told were hallucinations, which got me a diagnosis of schizoaffective disorder and more drugs with such awful physical side effects that I wanted to die.
I was never mentally ill until I was put into treatment for an illness I did not have.
When I declared my intention to withdraw from my final drug cocktail, people felt the need to talk me out of it. There was this one woman who I barely knew, I’m still not sure who felt it was appropriate to tell her about my decisions regarding my care, but she confronted me, told me about her daughter’s history with hating the drugs she was forced to take, and told me I’d be dangerous without the drugs. That I should make sure to keep myself away from people, take the social control pills, or isolate yourself. Let me reiterate; I was not sick.
That thing that happened in my mind when I came off pain pills, it was really distressing. It was bad enough that I was hospitalized. I tried to refuse drug treatment and was ordered by the court to take antipsychotics for 90 days. I made it maybe three weeks before I just couldn’t do it anymore. I was sleeping fifteen hours a day and the waking nightmares of my visions had not lost any power. I stopped that drug and immediately began to get better. Mental health services stopped giving me appointments. There is no help for someone who refuses to accept a diagnosis and drug therapy.
January is a hard month for me emotionally. My last hospitalization was 9 years after my first, almost to the day. I have a lot of difficulty managing sadness and loneliness, and sometimes that overflows into something that’s uncomfortable to watch as well. It’s hard for me to feel safe getting close enough to people to talk about how I’m feeling. I still get afraid that the response will be something about getting professional help.
This wasn’t just one bad doctor. This was fourteen years of many doctors, therapists, social workers, hospital visits and crises. Nobody ever questioned whether I was actually sick.
This isn’t just me. There are many others who have been misdiagnosed and had years taken from us. I missed the part of my life where most people learn how to be an adult and relate to others in a healthy way. A lot of us, myself included, have brain damage from years of being on neuroleptics. And we can’t seek help without being plunged right back into that.
The stigma I want to end is the stigma that says we aren’t allowed to talk about this.
It says that medical decisions must never be questioned.
It says that because I feel things strongly, I am diseased.
It says that I should be ashamed of my emotions and take drugs to make them more comfortable for others.
It says that the way I am is unacceptable.
It says that talking about the way I was harmed is irresponsible and judgmental.
My birthday is coming up. It’s my spiritual birthday, marking the time I was reborn. This spring marks four years that I’ve been free of symptoms of a disease I was told would never leave me. The reason I keep writing about this is to say that there is hope, and to encourage everyone to end the stigma.
Mad pride y’all.