But, it didn’t! So, I am grateful and writing for the first time in months. Hello, I missed this.
My mind is a assorted entanglement of intricacies and esoteric neurons. Its been a kaleidoscope of confusion, frustration, and wonderment since childhood. Once I was diagnosed with autism after high school graduation, I felt like I could breathe for the first time–I was okay, I wasn’t broken. Understanding my diagnosis of autism has given me a guidebook to countless pathways I wasn’t able to walk down or understand before, it gave me a reason for why my brain works in its own way.
This allowed me to learn more about myself and in return, foster a genuine self-love for myself amongst the difficulties. I was happy, content, and autistic. I gathered a network of coping mechanisms, connections and self-care tips which helped me tremendously. But still, I struggled. I assumed I was doing what I could and the rest of my hardships was just part of autism that I had to learn to deal with; I treaded on.
When my mind hurt, I tried to push through and use what I understood about autism and anxiety to mend it. And when that wasn’t enough, I settled down and tried to coast through it as part of normal life.
Three months ago, the genuine happiness and content state I had been building since Senior year of High School started to crumble. The more I tried to use my knowledge to help myself, the worse it deteriorated. I was beginning to regress to how I was in high school–severe clinical depression and suicidal cycles. The depression hurt worse this time though because I genuinely understood what it was like to not feel so low–I experienced the joy, immense passion and gratitude I have in my heart. It hurt to not have the mental state to appreciate it.
This summer, I started to see my intense requirements for routine and consistency worsen again but the medical professionals and myself narrowed it down to typical autistic struggles and regression from unexperienced adulthood. I figured I just didn’t know how to balance everything quite yet–full-time work, autistic difficulties, medical challenges, and university.
After summer, I started my first complete semester of college and moved into university housing. I prepared myself as much as I could possibly could; my need for things to be the “perfect way” brought me bouts of frustration and took days of my time.
I remember specifically in August, I wanted to make school supplies in a way that I could effectively manage all my past-school struggles and keep up the near-perfect GPA I got in my few college courses prior. I felt I had to do better than before now that I knew of autism and why I struggled. I had no excuse to not make up for all my years of academic failure. So, I started researching ways of note organization, printing and making bullet journals. I spent 48 hours straight without sleep to create binders filled of all these things for each class I was enrolled in. I lost myself in it and didn’t allow myself to even drink or eat before I finished.
At the time, I was so proud of myself. I thought I was finally going to do well in school because I was putting in so much effort. Looking back, I should have realized it shouldn’t take someone that much work to just build a notebook. But, this is how my brain has always worked. If I tried, it had to be completely perfect or else I failed everyone, disappointed myself, and wasted time. I realize now that in my past schooling, I stopped trying because when I did try and didn’t do good enough–it’d push me into a awful spiral. I learned that if I didn’t try, I could blame it on that instead of my inability to not be good enough.
This time, I didn’t stop trying. At the start of the semester, I loved my classes. I felt euphoric and grateful. I talked to new people, did my work, lived in a dorm with strangers and was okay.
But before I realized it, I wasn’t sleeping for days. I’d have to re-organize and clean my room multiple times a day. Rearrange my books by size, color, importance. Redo homework until it matched perfect word-counts. I could no longer use my notebooks because my imperfect notes destroyed them. When I’d go to the coffee shop to journal, I sat in the same seat every time and if that sit was taken–I’d have to wander around campus in circles until it opened up–I couldn’t journal elsewhere.
I chalked all this up to my anxieties. None of this was a new thing for me. But, this was the first time I dealt with all this while happy. Before, I got too depressed by my mind’s strictness to keep up with it. Now, I finally had a great circle of friends, immense passion, and was content with all areas of my life–things were good. For the first time, my anxiety recognized that and fed off of it. I had to keep everything good or else I would ruin everything I worked for.
I started dating one of the most wonderful people I had ever met. Everything was great. Then, my mind begin fixating on every aspect of the relationship, preparing to fix any possible crack that could ever possibly arise. I started to worry I was going to lose everyone around me if I didn’t work harder on every possible flaw or scenario that could arise. My classes started to stress me out because I was convinced every assignment determined my chances of graduating in the future.
Within the next month, I started having seizures for the first time. It was as if a light-switch clinked in my brain. I’d have more than five a day. Sometimes ten in a row. I began missing classes, which fueled self-guilt. I couldn’t do homework because I lacked the ability to form a complex sentence. My brain would spend an entire day on writing an email to a professor and still be unable to send it because it wasn’t good enough. I stopped eating my favorite foods because it didn’t taste right anymore, I’d shower multiple times a day and still feel gross, I cleaned my room over and over but it still didn’t look right. I avoided opening my computer for work because I felt so guilty for letting my teachers down that I shut myself off from school entirely. I couldn’t leave my dorm without spiraling in panic about something.
Everything made me spiral into frustration, anger, or severe despair. If I was waiting for the elevator and the wrong one came, my chest would hurt. If someone else was on the elevator, I’d feel nauseous. Walking past people, I heard everyone saying things about me and watching me. I imagined the worst possible scenarios happening, everywhere. Everything was wrong. Within minutes of being in public, I’d be in a bathroom throwing up from stress.
I constantly had severe chest pains and nausea with no way of getting rid of it. I was so filled with anger at myself for regressing, but now with seizures and unexplainable sensations. I began self-harming again, but this time with even less control. I occasionally hit my head in autistic meltdowns–but now if I heard a phrase, noise, or saw anything that my brain immediately decided was “wrong,” my fists would be pounding my head before I could even have a thought. To avoid sharing too much, I started harming myself in many ways with no self-control over it. I couldn’t go outside without imagining myself being crushed by a car, I couldn’t see my partner without also imagining him cheating on me and hurting me. I apologized for everything. If I was with friends and they seemed upset, I’d start crying and feel as if I was ruining their life and they wanted me dead. My mind lost all ability to think in non-extremes.
After a long discussion with my partner about everything that’s been going on, I finally realized and found the way to verbalize something for the first time. Everything clinked. **My partner is also autistic and deals with his own anxiety disorders, so that helps us understand each other’s difficulties on a level I cannot reach with most people. The genuine kindness and ability to still spend every night with someone so close to me while being such a mess was the most compassionate gift I have been given–allowing me to open up about details in my brain I’d never said out loud.
The realization went something like this:
“What is anxiety to you?” I asked.
“Its a feeling, my body has different painful sensations that my anxiety manifests in and a feeling of something bad happening.”
“I get the physical feeling too, the nausea and chest pains. Shortness of breathe. But my anxiety talks to me.”
“What do you mean?”
“Like there’s the two voices in my head. One is me, the other is this anxiety me.”
After hours of fleshing out my brain and explaining it, the best way I could explain it was somethin’ like this: I have always had two voices/completely different thought processes in my head since I can remember. One is me, that I always hear–always the same volume, its who I am, my personality, etc. The other doesn’t feel like me, but its always in my mind too–but when I am anxious, its often because of this voice being louder than the other one. The more anxiety I have, the louder and worse this voice is. It thinks the opposite of my beliefs, is made up of my fears and worst nightmares, along with (what I now know as) intrusive thoughts. Its the one that makes me do things I don’t want to do, have panic attacks, avoid everything, and hurt myself. The past few months, this voice has gotten louder and worse than ever to the point I was no longer trusted myself to not take my own life.
I was convinced I was going to kill myself, but I didn’t want to. I couldn’t eat for a week straight because even the thought of food made me sick to my stomach. I started screaming and breaking things without the ability to control it. I was my own worst nightmare, and it was terrifying because I couldn’t stop it and didn’t know what was happening.
This ended me up in the Mayo Clinic Psychiatric Clinic where I explained my anxiety in the way I finally understood. I got an answer to what and why this hell was happening to me. It was an answer I had never expected, but it might have just saved me. I am able to get help now and getting better is a possibility. I survived 2018, just barely.
I was diagnosed with Severe Obsessive Compulsive Disorder (OCD). Having this extra voice in my head since middle school made me unaware that it was an abnormal experience. Because of having severe OCD going undiagnosed and untreated for so long, I had an OCD break causing me to fall into psychosis. My ability to explain the two different voices in my head saved my life, but having this go untreated for so long has seemed to impact my life more than my autism or anxiety has. I just attributed all of OCD’s symptoms to being autistic or to my anxiety disorder, which meant my ways of treating it actually exaggerated my problems.
The medication prescribed to help my mental difficulties was making them much worse. The origin of my seizures are still unknown, but are assumed to be caused from the intense psychological stress of my situation.
The overload of all this new information has my mind spinning, but also granted me a sense of calm. Because now, I know.
I was told this diagnosis was far from the last one I am going to learn, that I was one of the doctor’s most interesting psychological cases and I have a long way to go until we understand the full cusp of my problems and all the directions they travel in. But that my OCD seems to have been the biggest contributor of my stress so far and working on management for it is needed for me to get better.
So, here I am.
I am in the process of getting help. I have been admitted to a daily mandatory program for autistic adults with severe OCD for 30-60 days. I am still hoping to attend classes in the early day before the program and be able to manage them with the understanding I have now.
But more than anything, I am just plain hopeful. I am hopeful to start feeling genuinely better in more ways and have it last longer this time. I cannot imagine a mind with one voice or even a mind thats quieter than my own–but I think its time I get to work towards a quieter mental existence, a healthier mind, and a less overwhelming life.
This is not how I expected my 2018 to end or 2019 to begin and making time-oriented goals only makes me feel more fearful of failing. So for 2019, my sole goal is to live. To keep growing, keep learning, and keep gaining more knowledge towards understanding myself. I am going to continue striving to find the positives, to listening to my own voice–not the negative, compulsive enemy in my head.
In attempts of finding a positive in this situation, I hope to use my new knowledge to become an advocate of understanding and compassion for the sufferers of OCD and integrate that into my autistic activism. I will continue my experiences to help others like me.