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The Disease I Might Have Terrifies Me

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Looking back on all the articles I’ve written the past couple of years on The Mighty, you can get a pretty clear picture of what life has been for me: mental illnesses that started and got worse with time, cognitive impairments that led to difficulties in school and movement disorders that persist and worsen to this day. It’s a picture of love, loss, fear, challenge, perseverance and uncertainty. But through it all, I thought I was just fighting multiple fights, all disconnected from each other. Well, that may not be the case. There may be an answer that would connect every medical issue, every diagnosis, I’ve ever received, into one perfect diagnosis. And it terrifies me.

I’ve lived with bipolar disorder, anxiety and ADHD as diagnosed mental illnesses for many years now. Physically, I have tardive dyskinesia, dystonia and was temporarily left unable to walk safely due to vestibular ataxia. For the past three years I’ve struggled with all of these things, in addition to the difficulties of being a young adult in college. To say it’s been a lot would be an understatement. My movement disorder has been getting worse and spreading to other parts of my body recently, so I discussed this with my doctors and therapist, and an idea has emerged as to what it might it be.

I’m 22. I’ve been accepted to a seminary in Washington D.C. and am pursuing becoming a pastor. I have 60, 70 years of life left to live, and I want to live all of those years without regret. But if I have what my doctors suspect I have, I will not get to see all of those years. What is this mystery diagnosis, one that can explain my mental illnesses and movement disorders at the same time?

Huntington’s disease (HD).

HD can first start presenting as mental health issues, like bipolar disorder and depression. Cognitive issues follow, things like problem-solving, memory, attention and learning all become more difficult. Eventually it begins to affect movement with involuntary tics. Sounding familiar?

HD generally first presents in people in their 30s-50s, but it actually can begin at any age. A small proportion of HD patients occur before the age of 20, and it is known as juvenile HD. It also generally is passed down by family members who had it, and with no family history (that I know of) of HD, you would think that would answer the question. The issue: about 1 in 10 cases of HD occur in people with no known family history of HD. I could get into all of the genetics and science of that (the downside of being a science major in college right now), but I’ll spare you. Here’s the point I’m trying to get across.

No one is immune from HD, but most people don’t get HD obviously. A lot of people experience the first symptoms of it: mental illnesses impacting mood, behavior and cognition. A lot of people also experience the later symptoms: involuntary movements, muscle contractions, tics, etc. as parts of unrelated disorders. But people who experience all of it, in the order I have? It looks a lot like HD.

So what’s the process now? I have an appointment with my neurologist to evaluate me entirely to see if I am presenting enough HD symptoms to warrant further testing. But just based on how we’ve been talking, she seems to be concerned at its likelihood. One beauty of HD is that it a diagnosis can be definitively confirmed with a genetic test. Again, I will spare you the genetics of it (I think it’s interesting, but this isn’t a science journal article). After I get the clinical evaluation with my neurologist, chances are she will order some bloodwork to get the genetic test. And at that point, it’s a waiting game.

But here’s my question: what am I supposed to do now? How am I supposed to focus on classwork, finals, papers, projects and the normal stresses of being a college student while I have the fear of getting a diagnosis of HD hanging over me?

HD has an average prognosis timeline of 10-30 years. I’m 22. If I follow that average, I’ll get to 37. How am I expected to focus or work on anything with the thought of having 10-30 years left?

For those of you who have read my articles for a while, you’ve come along with me on my mental and physical health journeys, and you know how complicated it all has been. This is my next chapter of my life, medically. It’ll be a month or two before I start getting any real answers, and you already know that once I do, I’ll write an article about it either way.

Overall, being this young, waiting to hear about a diagnosis like HD, it makes it difficult to think about anything else. And that’s not even considering actually dealing with the physical challenges, the tics and the mental illnesses. It’s anxiety provoking, it isn’t fun and it’s scary. As much as I can keep grounding myself, reminding myself to live in the current moment and not let the future get in the way of my present, this is different. This is different from anything else I’ve had to deal with. And because this is different, I don’t have any experience to rely on how to process all of this. But here is what I do know.

The unknown is scary for just about everyone, no matter what it is. This kind of unknown is uncharted territory for me, so I have to learn my way through this new challenge. And if the time comes that I do have HD, that will be another new challenge that I will have absolutely no idea how to process. But just like I’ve done with everything in my life, I’ll cross that bridge if we come to it. I’ve never let anything that’s come my way take me down so far. This fear of a potential HD diagnosis is not going to be what brings down everything I’ve built over the past 22 years of my life. This fear won’t win. I will accept and process reality, whatever it is, when I have clearer answers. Besides that, I continue to push, fight, because I want to live the best life I can.

Getty image via AaronAmat

Originally published: April 29, 2021
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