Dedicated to the chronic pain-free life I’ll never know

I live with chronic pain. It controls my life in almost every way, and not a moment goes by where I’m not somehow aware of it, whether it’s consciously or subconsciously.

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Last week, during the post-op visit following my second endometriosis removal surgery, I mentioned that I was ready for the healing process to end so I could feel relatively “normal.” It was in that moment that my doctor said one of the most painful things to me that I’ve heard from any doctor: “your version of ‘normal’ will probably never be 100% pain-free, and you just have to accept that.”

Most people with chronic pain have dealt with comments like this. It doesn’t matter whether you have a visible or invisible illness; many chronic pain warriors have experienced dismissive doctors for years. And many, sadly, have had doctors tell them that their outlook is bleak, and seemingly give up on them. But, while I think my doctor’s point could have been phrased MUCH more gently, I do think there is a small glimmer of truth in it. So, doctor, this is me “accepting” my life of chronic pain- but not on your terms.

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Sure, I’ll continue to live in constant uncertainty of what my next moment, next hour, next day, next week may hold. I’ll live my life never knowing if a massive flare is about to take me out of commission, and I’ll never know for how long. Maybe I’ll always feel like my body is letting me down...because, in a way, it is.

I can’t help but look ahead at my life and wonder if I’ll be able to make it down the aisle on my wedding day, or if I’ll wake up that morning unable to stand up straight. I can’t help but wonder if I’ll be able to conceive my own child- and if I can, if the pain (and high likelihood of passing my disease down to any daughter I have) will make it worth it. I can’t help but wonder if every boss I’ll ever have will need to know that I need to work from home some days, and when I am able to come in, I’ll be attached to my heating pad.

I wonder if I’ll ever be able to have another relationship. Will anyone be able to accept me with all the baggage and limitations that I come with? Will I ever be able to love and accept myself enough to let someone else enter my fragile and shame-filled world? Accepting this as my fate for the rest of my life feels like I’m being nailed into my coffin alive. Like, as The Script says, “I’m still alive but I’m barely breathing” (SORRY I just couldn’t think of a good way to paraphrase). These are normal thoughts for a 23-year-old, right?

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BUT... I don’t want to focus solely on the things my chronic pain has taken away from me, or may take away from me in the future. In fact, in some ways, I’m trying to think of it as a blessing in disguise.

If I didn’t have chronic pain, I wouldn’t have the connection that I have to the community of the strongest people I’ve ever met. If I didn’t have chronic pain, I wouldn’t have learned how strong I actually am. Eleanor Roosevelt said “a woman is like a tea bag- you can’t tell how strong she is until you put her in hot water.” While this is ABSOLUTELY true of women, I think it also applies to chronic pain sufferers (among others). It’s a sentiment I try to remind myself of often.

If I didn’t have chronic pain, I may not have found my voice. Speaking up for an issue that affects me along with over 176 million others has helped me learn how one voice can affect real change and how a small message of support can keep someone else going through tough times. If I didn’t have chronic pain, I may have never learned to appreciate every little ‘win,’ whether it’s a low-pain day, the sense of fulfillment that comes from connecting with someone else struggling with similar pain, or even just getting out of bed in the morning and living in spite of my pain.

My chronic pain has made me cynical and anxious about many things, but it has also given me a new appreciation for others. It reminds me that while my situation SUCKS, it could always be worse; that I’m lucky to have the healthcare and access to medical professionals that I do; and that most of the time, simply standing up straight is something to be proud of. While I admittedly complain a lot (my friends, family, and therapist can attest!), I try to remind myself regularly that I wake up every day and live life to the best of my ability. I’ve learned that ‘the best of my ability’ is more than enough.

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Maybe I’ll never live the chronic pain-free life that I had hoped for. Maybe I should kiss that person and that vision goodbye. Maybe I’ll always have to work a little harder than everyone around me to live a ‘normal’ life, and I’ll be exhausted and inflamed and sore and fed up most days. But, even if that’s the case, I’ll know from the bottom of my heart that I gave 100%.

So, I’ll say goodbye to the person who lives without chronic pain. To the person who is on the same page as the people around her. To the person who can naturally love and accept herself. To the person who trusts her own body. But, I’ll also say goodbye to the person who doesn’t try her hardest, because she doesn’t have to. To the person who never found her voice, because she had nothing to speak up for. To the person who never stops to be thankful for the little things in life, because she’s had nothing to put them into perspective. To the person who has never gotten the chance to learn just how strong she can be.

I may never be 100% pain free. Maybe I need to ‘accept that.’ But I’ve never been the type to settle for mediocrity in myself, and I’m not going to start now. So get ready, doctor, because I’m going to fight like hell to be 99% pain free.