On being your own advocate

If you believe you were misdiagnosed with Schizo-Affective Disorder instead of Asperger’s Syndrome, but didn’t have a family member that could advocate for you, where would you start to try to get correct diagnosis/help/treatment? How would you convince medical authorities to take you seriously if they’re starting from a “you’re bat-shyte cra-cra” baseline?


I don’t know what you mean by “medical authorities.” I’m not a doctor, but I don’t give anyone authority over my health or my identity. Neither should you.

That’s not to say you shouldn’t listen to your treatment team. You should, but if you feel you are being misdiagnosed, go get a second opinion. Find a psychologist who works with people on the autism spectrum and get a comprehensive assessment.

Maybe you’ll get a new diagnosis. Maybe you won’t. Maybe they’ll tell you that you have both a spectrum disorder and schizoaffective disorder. (That’s possible too.) Whatever they tell you, try not to let any diagnosis become a part of your identity.

If you feel like you’re not getting good treatment, go find it. I know it’s tricky with mental health, because you start to doubt yourself, especially if you’re dealing with psychotic symptoms. Still, you have to be your own advocate. Your treatment team may be experts on certain aspects of mental health, but they aren’t experts on you.

You are the only expert on yourself.


6 thoughts on “On being your own advocate

  1. Livvid says:

    I was diagnosed with bipolar disorder a few years back. It was after about three minutes of conversation, and I had a prescription written for me before I could say “lithium.”

    It didn’t feel right. Won’t get into details for brevity, but it just didn’t. Threw it away when I got home.

    I shunned the mental health field completely, feeling betrayed. Years later, I was feeling really consumed by my anxiety and said fuck it, even if it’s another pill pusher, I’ll take it, I need to sleep.

    Found an awesome therapist. I told her about how I’d been diagnosed with BPD. She took time to listen to my history, and eventually we came up with some solutions to the issues I was having. While she could see some of why the previous diagnosis was in place, our conversation definitely revealed that a different treatment plan wouls serve me better. Even if I had been rediagnosed with bipolar again, it would have felt different because I actually felt heard this time around.

    Sharing this story with you because I myself had gotten pretty jaded with my past experience with mental health experts, but it was a really great decision for me to follow my self knowledge and talk to someone else.

    Hope it works out for you.

  2. Kctw says:

    As a note for larger scale medical care, for the love of god everyone find someone who you comprehensively trust with your life and make them your medical proxy and leave them very clear medical directives. That is not necessarily a parent, sibling, or family member. Someone who understands your values and wishes for care, if something should happen to you. There is nothing worse for a medical team then to be stuck listening to estranged family members debate care options when close friends actually know what you want. And even if you find someone, get your wishes in writing so there is no debate. My medical friends have seen Buddhists receive CPR because the patient had no proxy, and his daughter never came to the hospital. Few practicing Buddhists would want treatment that literally spits in the face of their beliefs, but that’s what doctors do when there’s no directions.

  3. Anna says:

    To the OP, take CQ’s advice, it’s great.
    However I also understand the need to have someone to advocate for you. Find a family doctor who you trust to learn and understand your personal and medical history and who can recommend multiple mental health specialists in your area and who will help you out if you aren’t satisfied with your care at any particular moment.
    Also you’re not “batshit cray-cray” you’re part of a fucking normal distribution, don’t let anyone tell you otherwise.

  4. dk says:

    Whatever diagnosis you get, it is simply a piece of information so that you can find the treatment you need to function well. By your post, it appears that some diagnoses are okay with you, but you don’t want to accept others because they mean you are crazy. As someone long-functioning with depression, I advise you to get over that. Advocate for yourself, yes. But avoiding a particular diagnosis because you think it means you are lesser won’t help you. Believe me, no matter what you do SOMEONE will think you are crazy. It’s not about them, though.

  5. Damien Otis says:

    re: “Whatever they tell you, try not to let any diagnosis become a part of your identity.”

    I kinda get what you mean, but disabilities by definition have a huge impact on individuals and are not easily separated from “the rest.” it’s like when people say “oh you don’t *look* disabled” or “you should say ‘person with a disability, not ‘disabled person.'” it comes from that same place of disability as a dirty word.

    and you did say “diagnosis” and I kiinda get your point. diagnosis is just a (faulty and imperfect) tool medical folks use to treat disease. by themselves diagnoses aren’t defining, but they represent something that is quite deep, if you understand me.

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