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When Your Illness Means You Can't Live How You're 'Supposed' to at 26

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The day after my 26th birthday last week, I woke up and my back ever-so briefly locked up. Like I do with any new and sudden symptom, I sharply inhaled, froze and assessed the situation. But as soon as I noticed the pain, it disappeared, and I heaved a sigh and laughed at my brief panic. Also like any funny little moment in my life, I told Facebook, teasing that it was “all downhill” from 26 years old. A few friends chimed in with comments like “You’re still young” or “You’re a baby.” As much as that may be true, because of my endometriosis, I don’t quite feel 26. My husband jokingly put it like this the other day: “You may be 26 years old, but your body is a member of AARP.”

woman in forest standing over creek

That’s the funny thing about chronic pain conditions. On some days, I can climb up rocks, work out at the gym and enjoy my life the way it’s “meant” to be lived in my 20s. Other days, I have to sit in a chair to make dinner and take breaks in between loads of laundry. Even other days, it’s hard to stay awake for two consecutive hours. Or move. Or simply exist. This lends to the “invisibility” of invisible illnesses. I’m sure I’ve had acquaintances scroll through my social media posts, wondering how I could be in so much pain but still manage to do x, y and z.

The fact of the matter is that I don’t live a day without at least some pain. I don’t wake up with energy, and it’s a rare day that I skip a nap. But for the most part, after more than 10 years of enduring this disease — the vast majority of it spent not knowing what was wrong — I’ve taught myself to be a person. The most challenging part of endometriosis hasn’t been anything physical. It’s been learning to accept that it’s part of who I am now, and I’ll never escape it. I have to live with it.

A lot of people talk about not allowing a disease or disability to “define” you. And that’s a great thing. I don’t want to limit myself before I try something because my body might choose to be a total jerk. But at the same time, I don’t want to do myself a disservice by not recognizing that yes, I do have limits, and yes, everyone does, and no, I’m not a sham of a feel-good, carpe-diem-millennial™ just because I don’t have it in me to travel everywhere, remain in constant motion or commit to 90 different things like I used to force myself to do. At 26 years old, it’s time to do the big, scary, adult thing and accept myself — no matter how I may physically or mentally feel that day.

I’m always going to struggle with this. On most days, my body can’t keep up with my mind and everything that I want to do but just can’t. And I hate to say “I can’t,” as I’ve always been the type of person who wants to keep trying until she gets the hang of it. But “can’t” isn’t always a bad word. To me, it means, “This is great, but I have only so much energy, and I need to use it on other things that are more A. important, B. fulfilling or C. needed.” It’s not that I don’t want to or am not interested or anything else. It’s just… I can’t.

So maybe I am internally 66 years old. I mean, I do enjoy things like naps and being warm, and I recently got way too excited about the planner I bought. But I don’t think I’m ashamed of that anymore (or at least today). As long as I’m happy and living a life in which I find joy and fulfillment, which I do, then I’m who I am supposed to be.

Originally published: July 29, 2016
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