When Your Illness Has Been Ruling Your Life Without You Knowing It

Three days before my 30th birthday, I hit a wall. I was nearly five months in to my initial diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS). I was 11 days removed from the geneticist-confirmed diagnosis. I was spent. I had no good energy left to give, to myself, let alone to anyone else.

Years ago, I wrote a research paper on food allergies and learned that sometimes people have aversions to things that they are allergic to. I think it works the same way with good energy. Before I was diagnosed with hEDS, I unconsciously shunned what didn’t give me life. Was I avoiding what I didn’t need because I knew I didn’t have the good energy to waste? When you’re diagnosed with a chronic condition, which on some days saps you of every ounce of energy you have, you can’t waste good energy.

After my diagnosis, I started questioning every action, every word, everything. Will this sap me of the little energy I have today? Will it be worth it? How will I feel if it’s not worth it? Can I change my mind about it being worth it? How much good energy do I have to give today? Who do I want to give it to?

Sometimes, that energy is half-assed. I may have a chronic condition, but I don’t want to be a burden. It’s impossible to tell someone they’re only getting the half-assed version of me, especially if yesterday I felt fine. It’s even more impossible when you’re me, a chronic overachiever who wants to give all of herself, all the time, to all the people she cares about.

“Here I am, just a half-ass version of the person you love. It’s all the good energy I have to give today, but I’m choosing to give it to you.”

Chronic conditions are weird. It’s strange to be sick and not sick. I’m healthy… but not. It’s just weird to learn at 29 years old that I’ve never been entirely healthy, that I’ve been hurting for a reason. I think about that a lot. What kind of good energy would I have if I learned about my hEDS at age 7? Or age 15? Would I have stopped dancing? Would I have stopped doing yoga? Would I still become the me I am today if I had learned earlier?

I’m 30. I’m only 30. I have my whole life ahead of me. The 29 years behind me is a different life. It’s the pre-hEDS life. It’s the one I didn’t know I was living until I wasn’t living it anymore.

“I asked if you were hypermobile.”

Six words. A new life.

“How is your energy level?”

What energy? The good energy, or the one that just puts one foot in front of the other? Before hEDS, my life was mine. My good energy was mine. I didn’t think about how much I had, or how to divide it between what matters. I was tired. All the time. I didn’t know why, and I couldn’t explain it, but it was all still mine. It was still my good energy to give away.

Until it’s not. Until there’s a label on it. Then that label takes over. That label is what decides how much good energy there is to spend.

Newsflash: it has been that label all along, I just didn’t know it.

Bam. There’s that hEDS, the one that’s been making decisions for me my whole life without me even having a say.

It’s the one that said do this, not that. It’s the one that said put my energy here, not there. Do the splits on this side in ballet class and I’ll be fine, but don’t try the other side or it will feel like my hip is breaking. It’s the one that said I can’t fix my pencil grip because my fingers won’t go that way and it really hurts when I try.

It has been making decisions all my life. That’s a bizarre feeling.

Have you ever been standing in the ocean when a big wave knocks you over? You flounder for a second, convinced sharks are about to eat you, until you get your feet underneath you again. That’s what it feels like when you realize your chronic condition has been ruling your life without you knowing it. The realization isn’t the same for everyone.

For me, it was three days before 30… sobbing on my bedroom floor wondering when I’d be in control again, when I’d get my feet under me again. I had been living in the “sharks are going to eat me” floundering zone for months.

So I asked for help. It’s the first step to being in control. When I sat in my therapist’s office at my first appointment, spewing everything the last six months had given me, she said “it sounds like you’ve been having a hard time.”

There I was. Back on my bedroom floor sobbing. Yes. Yes, I am having a hard time. I’ve been trying to just be normal for 30 years and that’s really hard when I didn’t even realize I was doing it.

There’s relief in the realization that things are hard. There’s relief in labels. There’s relief in knowing it’s OK, and reminding yourself that every day. Or ask for help and have your therapist remind you it’s OK – that’s been working for me.

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