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Coping with Chronic Illness - I took a Wrong Turn Back There Somewhere

I got lost somewhere.

I’m not sure when it happened, or even precisely how. All I know is that it happened, and I miss myself.

Back in 2017, when my life imploded and it felt like I’d outgrown everything I’d built, life was intense. It was gut-wrenching, anxiety filled, and also… exciting.

I was pulling back layers quickly, feverishly even. I couldn’t get enough of every self improvement, life-coachy thing I could get my hands on. I was working out like a fiend, and making big, bold moves.

I could try and pretend I was a super healthy version of myself back then, but I wasn’t. There was a lot of good happening, but there was also a lot of, well... not good.

I was entirely ignoring the intense pain I was in every day. I made jokes about it, and kept making adjustments as needed to make it seem like I had it all under control.

Quitting my life and buying a one-way ticket to Italy seemed like a much better option than staying where I no longer felt I belonged, hip issues be damned.

A lot has transpired since then. I fell in love, I traveled, I lost the ability to walk without assistance, I fell out of love, I moved back to my hometown and had 2 total hip replacements, I started a new career path, I was undiagnosed and therefore unmedicated for ADHD, my health continued to worsen, I spent over 2 weeks in the hospital and came out with no concrete answers, but SURPRISE here’s a lockdown because there’s a pandemic outside. I fell in love again. I was diagnosed with Hypermobile Ehlers-Danlos Syndrome (hEDS), and finally, after over a year and a half without answers, they discovered I have significant craniocervical instability, and gave me an Aspen Vista Collar to try and help alleviate the pain until I see my new neurosurgeon in a few months.

It’s been a lot and I’m certain I missed some things.

I thought I was processing, but the reality is, where my health is involved, I’ve compartmentalized.

There’s been a large part of me that hasn’t been able to accept that my medical complexities are real, and not going anywhere.

After well over a year and a half of constant head pain and zero answers as to why, it’s been surreal to find an answer.

Part of me has held on to a belief that maybe this is all my fault, and if I’d change my diet, or do a yoga of some sort, that everything would get better- that I’d get better.

It’s my fault I’m sick and that’s why they’re not finding any answers.

Logically, I knew this was likely not the case, but my ever-present self-critical inner voice wouldn’t shut up about it.

Even after I was diagnosed with hEDS by one of the most renowned geneticists in the country, it didn’t sink in. I inadvertently built a wall between myself and a diagnosis and I haven’t been able to knock it down.

I waited 2 months for the results of my upright MRI.

Instead of thinking, “It’s taking awhile, I wonder if that means they found something,” I thought, “They haven’t called because they found nothing and it’s not a priority to give me the results.”

I was on my way to visit my girlfriend for my birthday weekend when I got the news.

I tried to figure out what I was feeling, but when I was coming up empty, I moved on to focusing on logistics- Gotta get this Aspen Vista collar. Gotta call the neurosurgeon’s office. Gotta cancel my neurology appointment for October, gotta write to my current neurologist and tell her what they found and all the ways she dropped the ball (which you can read about here).

I did what my therapist constantly tries to get me to stop doing - focusing on the doing things, without giving myself permission to sort through the feeling things.

My M.O. is always, “How do I feel? I don’t know. It is what it is I guess. Can you grab that phone number for me so I can…”

I constantly skip over my feelings because they aren’t going to change anything.

This isn’t productive for a multitude of reasons. One of the biggest being that it has kept me from fully connecting with myself. I’m so afraid of over-identifying with my conditions, or somehow making them worse by admitting “defeat.”

It’s bullshit. I know this (logically), but it’s like… I don’t know how to do this. I don’t know how to be the disabled friend.

It doesn’t matter that I was the disabled friend long before now. I could ignore it like a champ back then. I refused to let it stop me… until I didn’t have a choice. And maybe therein lies the answer to my current struggle- I miss when I had the choice to ignore it (even if it was only the illusion of a choice).

I miss being able to run, and do stupid bouncy-house obstacle courses. I miss being able to pretend I could maybe be a Ninja Warrior one day.

I thought once I had my hips replaced everything would be easy. I thought I’d be able to wash my hands of the whole thing and move on, but that’s not what happened. And ever since I realized those surgeries weren’t the end, I started, to some degree, shutting down.

Who am I now?

What do I want my life to be?

What impact am I hoping to make on others?

Where’s the balance between allowing myself to feel mournful over the physical well-being I always expected to have, and not allowing its absence to define or defeat me?

I don’t know right now.

After finding out about my craniocervical instability, the wall I built has started breaking down. I’m happy about that, but It also makes me feel a bit lost.

If this is what my body is doing at the ripe age of 34, what’s 38 going to look like? What about 45? 50? 75?

I get it, we’re not supposed to worry about these things. It’s going to be what it’s going to be. But I’d be lying if I said it didn’t spark concern (what do I do about that Marie Kondo?).

Will I adapt no matter what happens? Of course. It’s what I do. But, how do I do more than adapt?

All I’ve been doing is adapting.

I miss feeling free.

I miss feeling like I can hop on a plane and take long international trips alone.

I miss being able to throw on my running shoes and hit the pavement when life felt too heavy.

I miss feeling physically well… even if I can’t pinpoint a time when I truly did.

I know myself, but there are also so many ways in which I don’t.

These medical challenges have changed me in ways I’ve yet to pinpoint. Not necessarily in all negative ways, because that’s definitely not the case, but change nonetheless.

I wish I could leave y’all with some kind of inspirational word, but I don’t have any right now.

I’m not the Disability Poster Child of Positivity, as of late.

I’m tired. All the time.

I’m in pain. All the time.

I’m missing the zest for life I felt before all of this went from bad to worse. Maybe it still looks like I have it because for so long, I cultivated that in myself.

What I need to cultivate now is a new understanding of myself. A new relationship with my body, and focus on goals and dreams that align with who I am now, instead of who I thought I’d be.

Maybe it’s learning to accept that I have limitations, and it’s not always a matter of being able to persevere through them.

None of this is easy. But I do know if I let myself be honest and vulnerable about it all, it allows those closest to me to show up for me in meaningful ways. It allows those I work with to know what kind of help I need. It allows room for me to start truly accepting my reality, rather than thinking if I gloss over it, it’ll magically disappear one of these days and I can get on with the life I thought I’d have.

This isn’t about giving up. It’s about writing a new story, and releasing the ones that were never meant for me.

So for now, all I can tell you is this: Don’t lose sight of every single thing you have to be grateful for, even if it’s tough to see through the pain. Gratitude is what keeps me going every day. Well, that and a fuck ton of grit and determination… Also water. And saying fuck a lot.

Be well, my Loves. Tomorrow’s another day.

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