Alphabet soup

On chronic illness, neurodivergence, and invisible obstacles

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As a chronically ill, late-diagnosed neurodivergent human, I thought I had gotten used to discovering things about myself. Or, rather, suddenly understanding things about myself that I’ve always known about but have never had words for.

Listing all my various diagnoses feels like pouring someone a bowl of alphabet soup — ADHD, ASD, CPTSD, POTS, IBS, OCD… and now, I think, hEDS.¹

Photo by Sigmund on Unsplash

When I first started thinking of writing this post a couple of months ago, I had just realized that I have OCD, which was quite a revelation, and something I still haven’t figured out how to write much about. I’ve been seeing a therapist to work on that and some of the other letters jumbled up inside the soup bowl that is my bodymind. I thought (not for the first time) that I had finally cracked it. Surely now I had the whole picture. Every time I get information about something I didn’t know about myself, it feels like the last time… until the next time.

Recently, I stumbled on some information about hEDS that caught my attention in a way it hadn’t before, and after a subsequent deep-dive, I realized that — from what I can tell as a non-medical professional — my symptoms likely fit the bill for yet another diagnosis.²

I don’t know why I still feel so surprised every time this happens, especially since this has been the pattern for all of my diagnoses thus far; I stumble upon the right video or article or infographic about a thing I’ve been ignoring based on a shallow understanding of it, only to realize that it closely describes my experience, so I look up more information and, finally, consult a professional to confirm what I, at that point, am already pretty sure about. A lot of my neurodivergent and chronically ill pals will likely recognize this phenomenon.

If a doctor confirms this one, it honestly probably won’t change much for me. Given all of the other things I know about myself and how I’ve learned to support my brain and body, the biggest difference would likely be finding a few tweaks for the way I exercise, and possibly some physical therapy. But I still cried as I was reading the list of symptoms to my husband and connecting more dots between my experiences.

It’s astonishing what understanding yourself can do.

Growing up, I always felt inexplicably different than most people, but I didn’t have words for how or why, and it made me feel like there was something wrong with me. And after reading all of the things I’ve mentioned above, it might seem to other people that there is a lot wrong with me.

But for me, realizing that my brain and body work differently than most people has been so freeing.

Imagine running a race and seeing all the people that were lined up next to you at the start speeding ahead while you trip over invisible obstacles. Imagine running faster, pushing yourself harder, and teaching yourself to anticipate hurdles, taking big leaps to try to avoid falling. Imagine the crash when you inevitably underestimate the size of the invisible hurdle. Being able to name those obstacles and, at times, make them more visible, has allowed me to realize how hard I’ve been working all this time to keep up, and that I wasn’t just imagining the difficulty.

Knowing all of this makes me feel more capable, and proud of myself for how far I’ve come. But more importantly, it has given me the opportunity to change my expectations; I’m no longer trying to win the race. Instead, I’m slowing down, allowing myself space to rest, and finding ways to clear or minimize some of the obstacles. I’m able to choose ease and my own wellbeing over keeping up with others in a race I was never meant to win.

And to circle back around to the alphabet soup metaphor, serving up my list of diagnoses here feels like an offering for anyone who might be tripping over their own invisible obstacles. While I didn’t get into any specific details about my symptoms here, I think just realizing that everything isn’t supposed to be so hard was a huge first step for me, and the reason I began to understand that is because of other people sharing about their experiences.

My hope is always that talking about any part of my alphabet soup (and how I am still identifying new terms within it) will help someone see their own obstacles a bit more clearly.³

If you take anything away from this, let it be that you’re not alone in your struggles, even if you haven’t been able to clearly identify them yet.

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Sending love to everyone riding the struggle bus, and wishing you ease and joy. As always, feel free to share if this resonated with you.

1. In case any of these acronyms aren’t familiar: Attention Deficit Hyperactivity Disorder*, Autism Spectrum Disorder*, Complex Post Traumatic Stress Disorder, Postural Orthostatic Tachycardia Syndrome, Irritable Bowel Syndrome, Obsessive Compulsive Disorder, and Hypermobile Ehlers-Danlos Syndrome.

*I am not a fan of these terms for ADHD and autism, like many other neurodivergent folks. I don’t believe having a neurodivergent brain is inherently bad or a disorder. However, these are the diagnoses I’ve been given (minus the last one — for now, at least) and they’re one of the most direct ways to communicate my general experience of the world.

2. A diagnosis which, by the way, I studiously ignored for at least a couple of years because I saw the most basic explanation of it and thought, “I’m not that flexible, so I definitely don’t have that.” Of course, a similar thing happened for me with ADHD, autism, and OCD when I only understood them by their stereotypical presentations. We can’t know everything, can we?

3. Of course, I’m also picturing spoon-feeding a description of my experiences to doctors in order to confirm my suspicions, or to sceptics who think that diagnoses like mine are just an excuse to be lazy.