What I Wish People Understood About Chronic Pain

I am a people person. I love to hang out with friends. Crowds don’t stress me out, and meeting new people gets me excited. But lately, I’ve had to ration my time when it comes to social situations. And it’s not that I’m too busy or tired. It’s because I have chronic pain.

You see, I have frequent migraine attacks and most of my decisions focus on keeping the next big one at bay. This means I miss out or flake out on a lot of stuff I’d like to do. It means I’ve had to prioritize where I want to use my energy. And it means if I say I can’t make it out for a night with the girls, I might not be home sick, per say. I’m just home trying to not be sick.

My particular brand of head-crushing hell comes in the form of occipital migraine. The muscles in my neck tense up because of stress or because I’m a pseudo-infant who never learned how to properly hold my head upright properly. And then those muscles pull at muscles around my skull, resulting in an evil demon of a knot where my neck meets the back of my head. Tangled up in that knot are my occipital nerves. And the vice-grip those nerves are under causes debilitating migraine attacks that leave me extremely sensitive to noise and light, crying in a miserable heap on my bed until my medicine kicks in.

This can take hours sometimes, and other times my medication can’t even touch the pain I’m in. Those are the times I end up in the hospital. Often, if I end up in the hospital, it’s because I’ve been in pain for days and it’s finally gotten to be too much to bear.

So I do what I can to, you know, not have all that stuff happen.

In recent years, I’ve done what I can to minimize my triggers. Hiring a housekeeper every two weeks has helped to relieve a lot of the stress I felt over housework and the physical stress bending over to scrub things puts on my neck. It has also helped relieve the compounded stress of coming out of a migraine attack after an extra busy few weeks only to finally open my eyes to an impressively dirty home. No matter how busy or sick I get, my house gets a reset every other Thursday.

When I get invited out with my girlfriends or to a party, I take a careful look at my calendar. If I see that my son has an IEP meeting earlier that week or that my downtime is quickly shrinking, I have to decline. Even if I really want to go, which I usually do because people person and love my friends, I know that doing too much is going to create perfect conditions for a rager behind my head.

I have to remind myself that I’m doing what’s best for me and my family when I see another mom from school who tries to entice me into a PTA meeting with the promise of childcare and pizza. I love both of those things, and I would honestly like to be more involved and get to know the other parents. But for now, at least, I have to take a backseat to lots of things and just say that I’m busy. I know I’ll actually be at home, laying on the couch with my husband while we catch up on The Good Place. Saying I’m busy is a lot easier than saying that I suffer from migraine and then listening to stories about how an ear piercing cured her cousin’s migraine or inquiries about whether I’ve tried cutting out gluten and dairy and then explaining that my migraine attacks are a weird and evil breed for which the only treatment seems to be muscle relaxers or a giant shot in the back of my skull to deliver a nerve block.

All of this makes me self-conscious about coming off as lazy and flakey. Canceling plans and having my house cleaned and ducking into the bathroom when a mother with more energy than her kindergartener comes whizzing at me in her Lululemons— I know it can look like I am phoning it in a lot of the time.

I try not to think about what people at school may have been thinking when I recently shuffled in the door to pick my son up — wearing huge sunglasses on an overcast afternoon, an oversized sweater wrapped around my body, barely opening my eyes just enough so I didn’t walk into any walls or administrators during a migraine attack that was dancing around the line between barely functioning and utter misery. I’ve considered bedazzling a hat for those days that says “Migraine in Progress,” so I don’t get questions, stares, or funny looks.

That’s the problem with chronic illness. We often look, for the most part, fine. Maybe tired or bored or in a not-great mood, but fine. And we are anything but fine. The judgment and stress that come with managing chronic illness often make it flare up worse, so we retreat even more to avoid the repetitive questions or the side-eye when we look like we stayed up too late sniffing glue.

So just know, I would love to accept your invite to mom’s night out or volunteer for the book fair. But I can’t today.