Speaking A Shared Language of Pain

Last updated: March 2022

Lately, I’ve been in an endless flare-up — one of those flare-ups that change shape every day. It's my neck or my back or my hips. One day I can't sleep. The next I can barely walk. It's just endless.

It began about two months ago and it hasn’t relented, at all. The pain is with me every single day, all day. There are some better days, but I tend to spend them worrying that they’ll become bad days. And we all know how stress affects inflammation (hint: it makes it worse).

I should just take the wins as they come. But when your wins look like a 6s out of 10s on the pain scale, it’s hard to feel chipper about it all.

But, still. I’d rather a 6 than a 10.

The thing about living in this much pain is that you can only say it so loudly and so often. At its worst, being in pain makes you tired, makes you angry, makes you cranky, and it makes you apathetic. Pain can make you mean. Pain makes working impossible. It makes creativity a memory. It makes pleasure and non-priority. It makes socializing a disaster.

I want to enjoy life

I want to show love and relish nature and fun and art. I want to give and consume and experience and feel. But when I’m in this much pain, I just become a body that is trying to survive.

I think one of the hardest things about living in this seemingly endless flareup is that I always feel mostly alone in it. My good friends say they understand, and I’m sure they do — to a point. But these friends are few and far between.

My partner is incredible, and he can see the pain in my eyes, but I am cognizant that he is not my therapist nor my doctor. I don’t want to put all of my pain onto him. He doesn’t deserve to hear my agony every day. And so I go quiet. To everyone. And I hold the pain in for myself.

Enter social media, which can help

When the flare-up experience becomes so isolating and overwhelming, social media can really help. If you know me, you might know that I have a complex relationship to social media (I've written about it here). It is a playground of narcissism and gossip and cruelty, but it also can be a beautiful place for a true connection.

Over the past few weeks I’ve had a few conversations with people who make me feel like I’m not alone (shout out to @sarahlee, who writes for AxSpa and AS, and who runs a wonderful account @sincerelyautoimmune on Instagram).

I've bonded over the frustration and loneliness of it all. I've ranted about my pain ruins things for me. And I've listened to others tell their story. Sometimes, late at night, it can feel like all you need is someone to say, "I see you." I think our community does that beautifully.

And even though sharing our pain doesn’t take it away, there is a certain sense of peace and comfort knowing that inside this small, strange screen is a world that truly speaks my language.

I speak yours, or at least a dialect. I'm here for you, too.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The AxialSpondyloarthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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