What I didn’t have to give up because of schizoaffective disorder
It’s all gone. That’s what I thought when I received my schizophrenia diagnosis, later updated to schizoaffective disorder. In my head, I watched everything I’d wanted and planned go up in flames. At first, I was resigned to it. But, over a year later, mental health advocacy caught my eye and I took up the chant that a diagnosis on the schizophrenia spectrum is not a death sentence. And, though I stand by that, I think mental health advocacy, at least when it comes to severe mental illness, misses some things. This illness isn’t my fault, but I still felt like, by having it, I had to give certain things up. It turns out that wasn’t entirely true, and I feel like this needs more attention.
Hopes, dreams, goals, whatever.
I feel like mental/brain health advocacy can be very polarized. On the one hand, you have people who have succeeded despite their diagnosis fervently saying that a schizophrenia diagnosis does not mean you have to give up on your hopes, dreams, and goals. On the other side are those who have loved ones who struggle so greatly that they will likely never find themselves in a university classroom perusing a multiple choice exam. Understandably, I’ve found that many of these family members and friends don’t quite agree that anything at all is achievable. Or at least not with the current state of policy, treatment, and health care in general in the United States.
What I didn’t have to give up was much smaller, but just as important.
During therapy this morning, I wiped unexpected tears from my eyes. Schizoaffective disorder distorted my anxiety and tacked on social issues that make it difficult for me to feel comfortable around others. I accepted fault for my lack of local close friends. I accepted the blame for why I feel like I don’t fit in most places. My fault. It didn’t matter that I have stretched myself thin to try to build stronger friendships and find circles where I didn’t feel like the square peg. I had not succeeded, and therefore I am to blame. But I was wrong.
Schizophrenia spectrum disorders do require compromise, but not in every department.
Last week, I attended a conference on first episode psychosis, and I felt like all the pieces fell into place. I found people with whom I connected, felt respected, and around whom I felt like I wasn’t constantly making mistakes. In some instances I even felt like I knew what I was doing. It was an incredible feeling. It didn’t take away from the compromises I still had to make – my medication still played a major role in my schedule. The side effects still warped my fine motor skills. That social anxiety was still there. But those things didn’t dig at me as hard as they always did because I had people who supported me, who cared what I had to think, and who made me feel worthwhile and maybe even important.
The whispers leaked from the loudspeaker on the plane.
As the plane soared over my home state on my return from the conference, I heard whispers flow over the loudspeaker after the captain made an announcement. These voices crawled across every inch of the ceiling – two men and a woman. My heart sank. I knew it was about me. I was returning to a place where I often did not feel I could speak up, stand up for myself, feel like a peer, an equal, and like I belonged. Sure, those feelings were wiped aside at times. And life on the internet is a separate animal. But the last time I felt like that security long-term was among my friends in high school. Those voices on the plane were most certainly a product of my mind. But they reminded me that the happiness I felt at that conference was not to be found in my everyday life.
I thought it was all my fault.
I thought I must be too weird, too damaged, too unimportant and unskilled, too imperfect, too sick to fit in. My voice felt stolen and I had to bargain any time I wanted to borrow it back. Because of schizoaffective disorder, I felt like I did not deserve close friends or comfort in social situations. I felt like I could not be confident. All because of schizoaffective disorder. I could keep my hopes and dreams, though maybe a touch altered. But I could not expect to keep the everyday things that made me feel like I was a normal part of society and deserved as much as anyone else when it came to social and work life. But I had it all that wrong.
Schizoaffective disorder changed my life, but I didn’t have to give up everything.
Schizoaffective disorder does require you to give things up. And for some it’s more than others. But what none of us have to give up are our voices, our value, and the fact that we still belong in this world. I didn’t have to give up or settle for social interactions where I felt out of place. It never meant that I couldn’t have friends or peers with whom I felt close. I didn’t have to give up on feeling like I could have an opinion that mattered. I can stand up for myself, see the value in my experiences, and expect others to respect those things.
I’ve always had people who supported me and made me feel worthwhile. But I also always felt like I stole them or did not deserve them because they were few and far between or on the other end of the internet. But I was wrong. I gave up time, a portion of my autonomy, and accepted that my biggest dreams might have to be altered or adjusted in some ways. But I didn’t have to give up everything.
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