Advocacy,  Anxiety,  Cognitive Symptoms,  Depression,  Medication,  PTSD,  Recovery,  Schizoaffective Disorder,  Schizophrenia

A year in my life with mental illness – 2020

Katie, a girl with short, curly brown hair, stands with lines of sunlight coming through the window shades on her face as she looks into the camera thinking about the past year

2020 came at us with teeth. But as we rapidly approach the end of the year, which is also my 30th birthday, I’m beginning to reflect on this past year. For the United States and the world as a whole, it’s been a tumultuous year full of some high points, but many lows. Personally, there have been some bold highlights, but also deep lows. My mental health is always something of a struggle, but I was unprepared for what this year would bring.

Things don’t always work out like you expect.

This year started with a job change that I thought was going to be perfect. And while there have been good things about it, it was not as perfect as I had thought it would be. In past jobs, I’ve always struggled with the cognitive deficits of schizoaffective disorder, but they were always manageable.  This year, my anxiety turned the dial up higher. So much so, that it’s had a noticeable negative impact on my ability to keep up at work. I’ve cried over it, I’ve been angry about it, but I truly am trying my hardest. Nonetheless, I can feel how thin the ice is beneath my feet.

But that wasn’t the only way that mental illness has impacted this year for me.

Finding out that my emotionally and sexually abusive ex-fiancé moved into my apartment building brought me to a standstill. But the way I responded to the reactions of those trying to help me was just as bad. My mind took their words and warped them into invalidating thoughts that played on a loop in my head. It led to discussions I’ve never before had with my doctor. Am I a danger to myself? Is the hospital the best option? Despite being afraid of myself, we agreed that I would stay home.

Financial strain is something I’m very used to as someone who has high medical bills. But this year I was met with new insurance through my employer and unexpectedly outrageous medication costs. It’s made me worry that I may need to step back slightly in advocacy to work more hours and find higher pay.

All of this pushed my anxiety to a new level.

My hair is coming out more than ever. I’ve been paralyzed by panic. And recently I went through over a week of such severe back, shoulder, and chest pain that it would wake me up at night. I tried heating pads, ibuprofen, and meditation. I could feel my chest muscles strain to expand across my heart as a tried to breathe in deeply.

My world has been alive in 2020.

Music filled the air at times. Footsteps approached and surrounded me. And the world was full of voices. It was the muffled sound of people talking in the next room, yells and screams of people in the distance, and conversations for which I was just out of earshot, straining to catch the words. Chatter would pour out of trees or even just the corner of the room. These voices are new to me, and I’m not quite sure how I feel about them.

Also new to me, is my level of fear.

Not since college have I had hallucinations that chilled me to the core. This year, the sounds of people approaching me and even walking around me have shaken me so much that I was afraid to lock the door and lock them in with me. These sounds have only fed the flames of the anxiety that caused them.

But there has been a bright spot in treatment.

I am opening myself up in ways I have not done before. I’ve been working with my psychiatrist for eight years, and we’ve made more progress in the last 12 months than the rest of that time combined. It had nothing to do with her and everything to do with my willingness to be honest with myself. We’re exploring parts of my mind that I had locked away many years ago. And it’s perfect timing.

My medication regimen is largely successful, but there is limited wiggle room because of both the number of different medications I’m on and their dosages. With the advent of these new symptoms, my doctor gave me the option – do we try to do something with the medication, or do we try to talk through it? So far, we’ve been able to talk through the vast majority of symptoms that have reared their heads, though we did recently increase medication primarily for anxiety. For me, this is an incredible win.

There’s also been uncertainty regarding the course of my schizoaffective disorder.

As my symptoms grew louder and more abundant, we could attribute much of it to my stress level. But the question remained – what if this is the disease progressing? At this point, we can’t confirm anything. We’re doing all we can, so it’s pointless to dwell on it, but the thoughts and feelings sometimes drift to the top of my mind.

Change is both exciting and frightening, but when it came to my blog and mental health advocacy, with a little push, I took a running leap and jumped in with both feet.

I was terrified of stigma and judgement. And I had concerns that my blog would never go anywhere. But Not Like The Others has helped me help more people and change the way schizophrenia spectrum disorders are perceived than I ever imagined. It’s given me incredible opportunities like being written about in Women’s Health. And I’ve met incredible people. On top of that, thanks to NAMI Chicago and The Kennedy Forum, I’ve also been able to expand the audience for whom I speak. But there’s been anxiety gnawing at me every time I release a post, ask people to subscribe, or ask for donations to help me keep going. A familiar thought echoes in my mind, “why would anyone want to listen to me?”

There’s also fear related to opening up. I make a point to be painfully honest and entirely vulnerable. I don’t want to paint a picture, I want to open my heart to you so you can see my reality – the good and the bad. It’s frightening standing out in the open, revealing the parts of myself I spent years hiding. But I feel that that’s necessary if I truly want to make lasting change. And, with the encouragement of family and friends, I will keep going.

I’m also looking ahead.

On December 31st, not only does this year end, but I will leave 29 years behind me and run headlong into my 30’s. I know I shouldn’t, but sometimes I feel like I should have accomplished more by now. But I’m still here, and that’s an accomplishment in itself. I’m also looking ahead at what’s on the horizon – like finding a way to reduce my anxiety and continuing to work hard in therapy or helping more people and building more confidence in my worthiness to do so. And I want to continue to look inside myself and learn to accept and maybe even love the most broken parts of me, as hard as it is.

If 2020 has done anything for me, it’s confirmed that sometimes the most growth comes from pain and struggle. May 2021 bring hope and positive things for all. But if it doesn’t, I will pick myself up and continue to fight another year.



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