I have an unhealthy tendency to discount my own pain. I’ve had migraines for most of my life, but I still have trouble feeling I deserve to take care of myself during them. I still feel guilty anytime I don’t just “power through” the pain, and I still feel guilty calling myself a spoonie when I do power through it. I know I shouldn’t. Although I struggle to show self-compassion, I still measure all pain on a personal scale of 1-migraine.
I think this is another part of why I have had such trouble accepting the idea that I might have fibromyalgia. Fibro, in my conception, is a top-of-the-scale diagnosis. I subconsciously expect it to be much worse than any pain I’ve experienced before. I keep expecting it to be the flagship chronic illness in relative spoonie-ness, and I can’t imagine that what I’m experiencing could compare to it.
I was up until 5am on Saturday, with back, neck and shoulder pain. My joints were completely locked up and aching. I couldn’t sleep. I could only lie on the couch with my heating pad wrapped around my neck and pretend to listen to podcasts. Thanks to pain fog, I had to listen to all of those episodes again later anyway. Yet, when my partner asked if the experience made me think that I do, in fact, have fibro, I still shrugged my shoulders. (Well, I shrugged my metaphorical shoulders. I couldn’t physically move my real ones.) “Well, this one might be approaching migraine on the pain scale, but it certainly doesn’t top it.” Since the pain didn’t exceed the worst pain I know, I still couldn’t accept that I had it that bad.
It turns out, however, that my personal pain scale is broken. In the process of doing more research on fibro, I came across a list of the 20 most painful chronic illnesses, according to the U.K.’s National Health Service. A government agency hired a bunch of math geeks like me to actually determine the worst kinds of pain, and it turns out that both migraines and fibro make the list!
Apparently, I’ve already been dealing with one of the Top 20 pain experiences for twenty years. No wonder I keep being underwhelmed when the ‘fibro’ pain doesn’t exceed what I already know. If my personal pain scale already reaches ceiling, there really isn’t any more more left on the scale…
Now, of course, migraines, IBS, allergies and other symptoms are also very common comorbidities with fibromyalgia. It may well turn out that I can “blame” the migraine pain on fibro, too, eventually. However, that doesn’t discount the pain that migraines produce for those who experience them as their only chronic illness. The fact that I might eventually claim two of the Top 20 doesn’t invalidate the pain of the first diagnosis in isolation.
I discovered today that June is Migraine Awareness Month, and June 29th, specifically, is Chronic Migraine Awareness Day. I had no plans to write a blog post today, but I’m going to draw upon my years of cumulative ADHD experience with the “last minute” and post this anyway. I think it’s important that I do. A migraine is so much more than a headache.
I think back on all the times I have been ashamed when I have had to ask someone at an event to drive me home because I felt a migraine coming on and couldn’t safely drive myself. I think about the RSD when people laugh at the cheap plastic wraparound sunglasses I wear – often indoors – because the ugly brands are the only ones I’ve found that sufficiently block the light. (Photosensitivity occurs during migraines, but, for people like me, light alone can trigger attacks as well.) I wish, instead of subconsciously thinking I was weak in the past, I’d looked at those people who laughed or dismissed the pain of migraines and asked them how functional they’d be with an ice-pick rammed through their brain. I hope this post will help some younger migraineur stop doubting sooner that it really is that bad. I also hope that maybe reminding myself again not to discount my own experiences will help me accept my next diagnosis, whether or not it ends up sharing a place on the pain podium with my “first” chronic illness.
Need a recap of anything I’m talking about in any post? Check out the Glossary of Terms.