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How Functional Neurological Disorder Derailed My Life — and How I'm Taking It Back

Devon Oship
woman standing in front of a waterfall with a blanket wrapped around her

Life update: I have no idea what I’m doing.

Not that that comes as any surprise … I’m human, after all.

But real talk — I really did just throw all my academic plans out the window. I dropped out of grad school last weekend. I’m starting over again with applications to an entirely different program. And I have to figure out what exactly that path looks like. There are some things taking shape, but there are also still a lot of unanswered questions.

Why?

And, why write about it here?

One reason: I think there are important lessons I’ve learned that contributed to this decision that are worth imparting. 

Another reason: relatability. I started writing about my struggles with illness and disability in order to provide a source of realism for others like me. Sugarcoating my experiences would be the antithesis to my mission. 

So, here we are. Let me explain.

Related:How I Learned to Live Beyond the Challenges of Conversion Disorder

But first, let me backtrack.

I’ve been dealing with a lot of insecurity. And I’m talking a lot. The last several months have largely consisted, mentally, of me trying very hard to work that out. I’ve been making good progress, but I have a long way to go from where I began.

You see, illness doesn’t just affect the body. It takes a toll on the spirit, too.

As any regular reader of my blog knows, I was really sick for a long time with a disorder called functional neurological disorder. You can read more about that here, but suffice to say, it’s a condition where the brain loses the ability to communicate effectively between regions. This causes all sorts of nasty symptoms — there’s a laundry list too long to write about here. But what particularly affected me were the dual symptoms of severe fatigue and cognitive impairment.

Before I got sick, I was really smart. I got perfect grades all throughout high school, and then went on to study in college under a full academic scholarship. I earned a prestigious role as a research assistant in a lab doing amazing work in neuroscience. Maybe this is wrong — and it probably is to some extent — but I prided myself in this. Precious little else made me feel prouder than my ability to learn. And as I grew older, I used that information to root out the truth of complex situations in order to answer difficult questions. I was beginning down the path to becoming a scientist, and this excited me beyond belief.

Related:How the Medical System Is Betraying People Living With Functional Neurological Disorder

Then, I suddenly lost the ability to think clearly enough to problem-solve, retain information or even speak with any level of the proficiency I’d once taken for granted. One particularly bad day, I realized in horror I couldn’t even read a restaurant menu and had to rely on those around me for help in such a simple task of choosing and ordering a meal. This absolutely crushed me.

I’d once dreamed of becoming a doctor. I had plans to either go to medical school or get my doctoral degree in neuroscience … whatever exact path I chose, I knew I wanted my plans to be big. I wanted to solve problems in science on a high level in the areas which I care about so much.

But I no longer believed I was capable of doing so. Instead of exciting me, the idea of a doctoral degree started to frighten me. I felt so inadequate. I could no longer retain information or process high-level concepts, so I began to shy away from engaging with them like I once had. I no longer thought of myself as someone who could be a peer of the individuals I knew who were actively working in the sciences.

Related:When Functional Neurological Disorder Plays With My Emotions

I’ve been recovering — that’s a major point of my writing, generally speaking. I’ve come so far! I’m back to working full-time and living a “normal” life. But I still have some difficulties. I tire easily. I can have trouble with specific word recall. I often think one thing and find myself saying another. Recently, for example, I was trying to order hot fudge and accidentally asked the (very confused) waitress for hot sauce instead. I’ll do things like ask my husband for candy when I really mean ice cream. I’ll use the entirely wrong tenses or conjugations of words I should know. Interestingly, my ability to accurately read analog clocks never came back 100%. (Weird, right?) Anyway, there are a lot of little things that just, collectively, can make me still feel pretty bad about myself and cause frustration in my daily functioning.

This, combined with the severe state of my deep-set insecurity going into recovery, led to a situation in which I really wasn’t sure what I believed about myself going into this past year(ish). I certainly wasn’t back up to believing I was smart or capable, like I’d once believed. And I didn’t think I was cut out to be a scientist.

So, I chose another path.

Don’t get me wrong — there is absolutely nothing wrong with not studying in STEM fields or going for higher-level degrees. We need people to go into things other than STEM. Science is amazing, but it cannot solve all of our problems and scientists cannot fill all the roles.

But a career outside of my passion wasn’t for me. As I started engaging with my coursework and learning more about the field I’d chosen to pursue, it just didn’t sit right with me. I felt like an alien, like I did not belong.

I spent a lot of time thinking about these feelings, and talked them over with trusted family members and friends. At the end of an emotionally intense week, I emerged with the newfound understanding of why I had made my previous choice, and why I needed to unmake it.

I had given up on my passion because I was scared. And I was scared I couldn’t do it because of my disability.

I spend so much of my life advocating for others to believe they can overcome and do whatever it is they love, despite facing adversity. It seemed strange I would need so acutely to preach that message to myself.

But, I did. 

And I realized that it’s OK to be scared. It’s OK to feel insecure. Everyone feels this way sometimes. But I owe it to myself to not give in to these feelings. I have struggled with illness, but I am strong. I am capable. I recovered from something I thought I’d never come back from. Why was I letting the nagging thought that I wasn’t good enough for a challenge have that much power over me?

I don’t know that I can say for sure.

But what I am sure of is I am done devaluing myself and my capabilities. My struggle with disability slowed me down in reaching my goals, but it does not mean I am incapable of reaching them. If anything, I think the progress I’ve made against such large challenges already points to me being nothing but capable to do what I set my mind to do.

And I think if you are reading this and dealing with your own version of struggles like mine, you can take these points to heart as well. Illness and disability (and adversity in general) can be so anxiety-inducing. They can make you doubt yourself in every way … especially when your heart wants to do one thing, but your body fails you. Living as a strong-willed individual inside such a fallible vessel is scary. That’s a real feeling. It’s valid. Acknowledging it is nothing short of emotionally intelligent and so very, very necessary.

But you can’t let those anxieties dictate your life. If there’s something you want to do, and a reasonable way to achieve that goal, don’t let the fear of failure — of not being good enough — stop you from chasing after it. Don’t let yourself be lulled into an unhappy routine just because it feels safe when you are capable of so much more.

I’m repeating this message to myself (over, and over, and over …) as I embark on whatever venture comes next for me. I implore you to do the same.

Don’t devalue yourself. Believe in your own capabilities. Disability should not change your dreams. Take it from someone who nearly made that mistake.

Read more stories like this on The Mighty:

When I Found Out My Seizures Weren't Epilepsy

The Lies My Body Tells Me With Functional Motor Disorder

Why Talking About My Reality With Illness Isn't 'Negativity'