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What I Wish I Knew 12 Years Ago on the Day of My Schizophrenia Diagnosis

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I know your mind is spinning right now. It’s August 5, 2008, and the words, “it’s looking to be schizophrenia,” are turning over and over in your head. You won’t ever forget the tone in her voice when she said it, or her red nails. This day feels like the end of everything you’ve ever known, but it’s actually just the beginning of something entirely new.

Your diagnosis will ultimately be updated to schizoaffective disorder, and you will struggle at first — with understanding your disorder, with the symptoms, the medication, and also the constant anxiety of being “found out.” But contrary to what you believe, those close to you will continue to support you no matter what. The teachers and administrators you choose to tell will rally around you in a way you would never expect. And while, right now, you may not even be confident you will get to graduation day, you will walk across that stage with your head held high.

Ignoring advice that you should take a gap year before college, you will leave everything behind to attend Northwestern University.

I can’t say if that was truly the right decision, but it will be worth it in the end. You will feel in over your head. You will be on the edge of coming apart so many times, but this is where you learn to ask for help. Let go of your pride here. Open your eyes to the knowledge that schizoaffective disorder is a disability and it’s OK if you need help to get by. You will lose many things and mourn the loss of your former life and the life you expected to have, but you will figure things out and graduate — a quarter late, but so what? You did it, something you weren’t sure was possible. Savor that moment.

Prior to this day in 2008, you will think you have it all figured out.

You planned to turn your love of music into a career and study music business, becoming an A&R rep after college. But things won’t quite go that way, and that’s OK. You’ll fall in love with psychology and schizophrenia research, but what will really change your life is speaking publicly about life with schizoaffective disorder for an NU Active Minds event in 2011. It will feel like such a relief to get this secret off your chest, but you won’t be expecting people to thank you for letting them into your life to better understand an often misunderstood disease. Some of them will even say it’s life-changing, as hard as that is to believe. This will spark a fire in you that continues to burn today.

After college, you’ll make some big decisions and find yourself in situations that you never wanted to be in.

You may feel just as alone as you do today. But just keep hanging on to the hope that things will get better because I promise they will, no matter how dark things may seem. Never forget that you have a good doctor and friends and family who support you, even if they’re far away. Remind yourself every day that you can do this.

After what will feel like an eternity, things will start to look up, at least in some areas.

You may struggle financially, but you’ll have support both here in Illinois and back at home. Social situations will be riddled with anxiety and that fear of being found out will come roaring back. I wish I had good advice for you, but this is a problem that will continue even today, even after you decide you’ve had enough of keeping secrets and pour your heart out on Facebook. But you will not believe the supportive responses you get.

You’ll have already been speaking to classes at Northwestern since before you graduated, but in 2018 and 2019, you’ll decide to venture further into advocacy.

Getting involved with NAMI Chicago and speaking for Crisis Intervention Training will be an amazing experience and will fan that flame in your heart higher. After two tries, you’ll take the leap and start a blog. While you won’t let yourself accept it for a long time, advocacy really is where you belong. You will go through so many times where you wonder why anyone would want to listen to you, but what matters is that they really do. You won’t believe where you’ll be in 2020.

I know that right now you would like to think you can fully recover and continue with the life you always pictured, but that’s just not the case.

You’ll continue to experience symptoms, even when it doesn’t seem like you’re stressed enough for them to happen. It’s going to be frustrating. There are times where you’ll want to give up and stop trying, even years after the diagnosis, but you’ll keep going. It may not be the life you pictured, but it’s still yours and it’s still worth living. You’ll beat yourself up because of bad decisions and not meeting your astronomical standards, but try to forgive yourself, and try to accept what you are capable of rather than what you feel you should be capable of. It will take years to get there, but just keep working on it.

As those thoughts keep spinning in your head, I want you to reach out and grab a few.

Hang onto hope; some days, it will be the only thing that keeps you going. Hold onto your determination. Some of it may be denial that things are different now, and that will cause problems, but determination will drive you even when things don’t go according to plan (which they rarely will.) Make an internal note that you have worth and you are important. You will find it hard to believe on so many occasions, but it’s true. Never forget that people support you, even when you think most people would rather run away from you.

And finally, keep telling yourself that you can do this. Symptoms may plague you and you’ll have to learn how to live your life with them.

Your life will change forever, but keep putting one foot in front of the other, even as you’re walking into the pitch-black unknown. I wish I could tell you that everything will work out in the end, but the important things will.

Twelve years from now, you’ll still be stressed, you’ll still have symptoms, and you’ll still have problems, but you will keep putting one foot in front of the other and you will have strength and perspective you never imagined you could. It feels like the end of your life right now, but really it’s just beginning.

Photo by Shotlist on Unsplash

Originally published: August 15, 2020
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