Adapting to life with schizoaffective disorder (part 1) – Self-acceptance

“It’s looking to be schizophrenia.” My heart skipped a beat when my doctor said those words. Part of me felt calm because it confirmed what I had suspected, but in the car I came apart. I didn’t know any success stories of people who went on to live perfectly normal lives. All I knew were stereotypes and stories with poor outcomes. I swore to myself that that would not happen to me.

The first year

The first year of my diagnosis was a mixture of struggle and denial. I was highly motivated to take my medication because I knew it was key in reaching and maintaining stability. I hated the side effects, but I was desperate to stay in school. So much so, that when my doctor offered me the option to do inpatient treatment to help get me stable faster, it was a firm no. Same thing with the next offer, home hospital, an independent study program. No way was I going to leave school and admit that something was wrong and have everybody find out. I was afraid that admitting something was wrong would mean I would have to give up my life, which isn’t the case at all.

On your marks, set…

I thought that I could outrun schizoaffective disorder. Like if I just kept carrying on with my life like nothing was different, then everything would be okay and stay the way it had been where academics and athletics were easy and so was being skinny and my problems didn’t involve people peering in my windows and medication side effects. I grieved the loss of my “normal” life for a very long time. I felt like I had failed; like I had let everyone down even though schizoaffective disorder wasn’t something I chose nor is it a character flaw. I was stuck in limbo – recognizing that things had changed, but refusing to accept it.

My close friends were incredibly supportive, but I felt isolated, like they lived their lives on a separate plane. I didn’t feel like I could identify with anyone. And the social struggle continued when I left for college. I felt awkward constantly, worrying that I was going to say something stupid and everyone would leave me. I desperately wanted to feel like I was like everyone else, but I didn’t.

The breaking point

Throughout college, I remained dedicated to my medication regimen, and continued therapy, though I never felt like we made much progress. I also remained dedicated to my sprint, still trying to outrun schizoaffective disorder. I found some relief with a group of friends and a boyfriend to whom I clung, but my refusal to admit that there was something wrong wreaked havoc on my stress levels and my GPA – ending with me losing my full ride scholarship. Not only was it a blow to my pride, but now the cost of college fell on myself and my parents. It was a reminder that my refusal to accept that I needed help was affecting those around me too. I knew I had to make a change.

I found assistance for academics through the student disability office, attending professors’ office hours, and studying with my boyfriend’s help. But my symptoms picked up in my sophomore year, and it felt like I was coming apart at the seams at all times. What was vital for me was the support of my friends and professors at college. My family’s support is endless, but that episode made me realize the importance of a local support system.

In my junior year, I joined a mental health group on campus called NU Active Minds. Through them, I had the opportunity to speak publicly about living with schizoaffective disorder for the first time. I’m not sure why I was so eager to speak about it, but it changed everything.

The turning point

Speaking about mental illness is my passion. It gives me a purpose and it helps me accept myself. It makes my experiences feel real, rather than just things I shoved into the back of my mind. I think it was easier for me to accept schizoaffective disorder and what I’ve been through when it became a good thing. People tell me that hearing my story helped them. That it made them feel less alone. And that it helped them truly understand what schizophrenia and schizoaffective disorder are like. Something that I used to treat as a failure can actually make a difference in people’s lives and help work towards a day where no one feels like I felt and everyone has the support that I had.

There are still times where I feel bitter, but after years of denial and grief, I finally feel proud of myself. Sometimes I have to remind myself that I’ve overcome a great deal, but schizoaffective disorder did not stop me from living my life. Sure, it’s a different life than I had thought I would have, but it’s mine. It’s an obstacle course, but I know that with the help of my treatment, friends, and family, I can do this.

You can too

If you have a mental health disorder, opening up to a public level may not be what helps you accept yourself and your life with your disorder, but there is something out there that will. Never give up hope. And I will continue to speak and write about my experiences to show that this can be done and to help people become more educated, empathetic, and equipped to offer better support to those with mental illnesses. Whether you have a mental illness or not, I hope this blog has helped you in some way. That’s what makes all of my struggles worthwhile.

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