If I had a second chance at my first year with schizoaffective disorder
Close your eyes for a moment. Think of a difficult time in your life. What do you feel? Do you feel like you did your best or do you have regrets? Or maybe a combination of both? If you had a second chance and could go back and change the decisions you made or the way you acted, would you? When my mind wanders back to my first year living with schizoaffective disorder, I think I did the best I thought I could. But I don’t think I made all the right choices. If I could go back to standing in 17-year-old me’s worn out converse shoes, there are some things I would do differently. They wouldn’t have solved all of my problems, but they could have made that first year with schizoaffective disorder less rocky.
If I had another chance, I would have been more open-minded about treatment options
I was lucky to be given the option to go to a hospital upon my diagnosis rather than having that decision made for me. But I said no without even considering it. Next, I was offered an independent study program my school had for students with disabilities and health issues. Once again, an immediate no. I refused for several reasons – fear, denial, and also because I didn’t want others to find out that something was going on and that I wasn’t that upbeat, witty, bright girl anymore.
Instead, I floundered under everyone’s eyes as I tried to get my feet under me, which was mortifying. Had I been more comfortable with the idea of severe mental illness and did not feel ashamed of what I was experiencing, things might have been a bit easier. Like doing what I needed to do to set myself up for the best recovery possible. I have no way of knowing if hospitalization would have been a positive experience. But I wish I had at least looked into it and given that or the independent study program a chance.
If I had another chance, I would have spoken up when things weren’t working out.
I called my doctor when new symptoms developed, but when it came to medications and therapists, I was complacent. I put up with medication side effects and pills that weren’t helping for much longer than I should have. Had I been more vocal about what was and was not working and which side effects I did not want to tolerate, I may have found the right medications sooner.
I lost countless hours to therapy appointments that did not benefit me and sometimes made things worse before I finally could not take it anymore. It took over four years for me to find a therapist who was truly helpful for me. It didn’t have to be like that though. I had to learn that therapists are there for me. If I’m not getting anything out of it, there is no reason to stay with that professional.
If I had another chance, I would have sought out people with first hand experience.
After five years with my diagnosis, I finally met someone else with schizoaffective disorder. Though I still felt somewhat insular, I didn’t feel like the only person in the world with schizoaffective disorder anymore. I developed friendships with mental health professionals, researchers, and professors over the years, but none of my conversations with them had the impact that speaking with someone else with first hand experience did. I did find people with similar experiences but different disorders, which was helpful, but not quite the same.
It wasn’t until many years later that I discovered the schizoaffective and schizophrenia community on social media. I think I would have felt so much less worthless, so much less alone, and so much less shame in general had I had someone to talk to who could relate to me and what I was going through and help me understand what was happening and how to cope.
If I had another chance, I would have been more open to asking for help from others.
After bathing in D’s in calculus, my teacher pulled me aside. I had never had him as a teacher before, but my school was small enough that he knew my academic history, and he knew it well enough to know that this was not normal. We decided that I would swap from being a student in his class to teacher’s assistant. But I did not learn my lesson. In my English class, I waited until I was barely keeping my head above water with my homework before reaching out to my teacher. Opening up about my schizoaffective disorder in that first year felt impossible. But had I reached out to my teachers before I was on my last breath, I could have saved both my grades and my self-esteem.
I am so grateful for the support my friends offered, but I kept to myself. I didn’t feel comfortable reaching out for support because I feared it would make them uncomfortable and that was the last thing I wanted. Most of the time I didn’t know what I needed anyway. In that first year, I also avoided telling other friends who would have been supportive. I was too ashamed. And it left me feeling alone when I know others would have been there to hug me tightly. I didn’t need to shout it from the rooftops, but keeping it from friends, teachers, and even family members who could have been helpful and supportive most likely held me back in my recovery.
If I had another chance, I wouldn’t change everything.
Despite my setbacks, refusals, and fears, I think I made some good decisions too. My family purchased books on schizophrenia that helped us understand it a bit better. I took all my pills exactly as prescribed, and dutifully showed up to therapy and psychiatric appointments. But there was more. Though I didn’t share my diagnosis widely, I’m glad that I shared it with close friends. I don’t think I would have gotten through that year without them. I’m incredibly grateful that I felt safe enough to speak up at all, even with the first symptoms of psychosis. And I know that going to college rather than taking a gap year, though not the right choice for everyone, was the right choice for me.
The choices I made and wish I made are not going to be right for everyone, but there are aspects that I do hope you remember.
I hope you remember things like being open-minded about treatment options and taking the time to look into things before dismissing them. Or allowing yourself to speak up when things aren’t working. I hope you seek out those with first hand experience with any illness you are going through to find a community that truly gets you. And I hope you can open your arms, however cautiously, to the idea of asking for help, not just when you need it, but before things plummet downhill. Above all else, please know that you do not need to do everything right in order to be successful. There will always be things you wish you did differently. What matters is that you survived.
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