A Number of Things Not to Say to Someone with Chronic Pain

Happy Migraine Monday.

I spent the entirety of last week with a migraine. I powered through the work day, went home and ate whatever paltry dinner I could muster, and crashed. By Thursday, I was spent. I had the foresight to write my blog posts during recess and lunch, because I knew the evening would provide no writing time. Sleep tends to take priority over writing.

My migraines ebb and flow. Sometimes I have an aura, sometimes I do not. Sometimes my eyes are photosensitive, sometimes only the right one functions correctly. All of them have this in common: They diminish my ability to function at full steam. And unless I say something, they remain invisible to all but those who are closest to me: my students, my closest colleagues, and my dearest friends.

Sometimes the facade cracks, and someone else sees a brief glimpse of how hard I’m working to keep going. The secondary language arts teacher in the Blind/Visually Impaired department saw me pause to take a collecting breath before Romeo and Juliet practice on Thursday and gasped. How do you function like that?? I told her I just keep moving. If I stop moving, inertia takes over. As long as I don’t stop, I don’t have to think about it.

Thursday night, when I finally stopped, inertia took over. If anyone is wondering how long I sleep after a week of working with a migraine, the short answer is “18 hours.” The long answer is “18 hours, only waking once to text my boss and my carpool to tell them that the sun (not having risen) was already too bright and I was staying under the covers. I missed the only Friday I was supposed to work this month.

I used to be punctual. I used to follow through on plans and commitments, eagerly volunteering for committees and extra duties at work and church. I helped build a roller derby league as the president, spending every weekend stomping through town for sponsors and practice spaces and new skaters; I haven’t done a thing in a year. I just can’t. Every plan I make now has a footnote: plans may be canceled or altered with little to no prior notice because blood vessels are fickle. 

The thing about migraines is that the only people who understand them are neurologists and other people who have them. They aren’t just headaches and more than fibromyalgia is just some aches and pains. These are debilitating conditions.

A wheelchair user shouldn’t have to apologize for a building’s barely-meets-ADA accessibility if she is late for a meeting. A deaf patient should not have to apologize that the interpreter provided for his appointment is late, unprepared, or otherwise not up to the task of providing the services needed at a medical appointment.

I am tired of apologizing for my blood vessels.

This brings me back to Friday’s text messages, and, really, every text message or email I’ve had to send and conversation I’ve had to cancel plans due to a migraine. As I mentioned last week, my auditory processing takes a huge hit when I have a migraine. And my anxiety spikes. Phone calls have been one of my anxiety triggers since middle school, and the added strain of slow processing does nothing to help that situation. Text messages are what keep me tethered to the “normal” world.

In the spirit of Everyday Feminism’s 7 Things to Avoid Saying to Pregnant People and 7 Racially Coded Phrases That Everyone Needs to Stop Saying About Black People, (which are among the very few listicles that actually teach me something!) I give you my list:

A Number of Things People Need to Stop Saying to Migraineurs (and probably to other people who have chronic pain)

1. Oh, it’s too bad you’re canceling, because you’re missing [blank].

I want to throw my phone when I get this message. I’ve already cringed my way through the screen light assaulting my retinas to send you my cancellation. Chances are I already know what I’m missing. And, frankly, I’m hyper-aware of what I am missing. The collaboration time with my colleagues? Coffee with a friend I haven’t seen in a month? You can bet I’m as disappointed as you are. You don’t have to point out how disappointed I should be. This has been going on for over a year now, I’m well aware of how much it sucks.

Alternative: I’m sorry to hear that. I hope you are on your feet soon. Or just a Thanks for letting me know.

2. You look like hell.

Yes, I know. I feel like it, too. To be honest, coming from the right person, I don’t mind hearing this. It means that someone knows how hard I’m trying to power through the day. But other times, it means I’m not faking it as well as I thought I was, which just makes me sad. Let me have my illusion sometimes, k?

Alternative: Can I get you some coffee?

 3. You look a lot better than yesterday!

Really? Geez, I must have looked awful yesterday.

Alternative: Can I get you some coffee?

4. Have you tried [blank] for treatment?

Unless you are my primary physician, my neurologist, or a fellow migraineur, your suggestion might make me laugh out loud. It’s not that I’m trying to be rude. It’s just that when I’ve been to the urgent care clinic to get shots of painkillers in my hips and it still takes 4 days for the migraine to subside, your nutritional shake sounds a little silly in comparison. In church last week, there was a group of us discussing the different antidepressants we’ve tried over the last decade, our dosages, the side effects we’ve had, what works best about them. It is a conversation that would be completely foreign to someone who has never experienced a life with depression. And if someone had joined our conversation and said, “Well, I read that if you just eat more bananas, it really helps with the winter blues,” we probably would have stared at that person with our jaws slightly agape. Not even on the same playing field. That’s how I feel when someone suggests putting a cottonball full of lavender on my windowsill.

Also, migraines already rule my life; I don’t want every conversation to be about my new antiepileptic drug. And once you ask me, I’ll just keep rambling and I’ll probably tell you about how the migraines affect my IBS, too. So before you ask, make sure you actually want to know about my treatment. And then think about the fact that some migraine patients have menstrual migraines, and then ask yourself if you really want to insert yourself into such a personal conversation between me and my doctor.

Alternative: Seriously, if you are really curious about my treatment, ask yourself why you want to know. I’m usually an open book. That doesn’t mean you want to read it. You’re better off just giving me some coffee.

5. Have you tried a detox?

Yes, I already pooped today. Next.

6. [Missing meetings, losing your voice, doctor’s appointments, etc.] is really impacting your job performance. You need to leave your home life at home.

I know. We know. When I was going through my divorce, I felt scrutinized when I had an off week. And I admit I had some pretty off weeks. What I didn’t know was that through my work’s insurance, I could have had five free counseling or therapy sessions that could have helped in the aftermath and reorganization of my life after my husband and I split up. That, right there, was the perfect alternative. Those same sessions could help with the depression that has resurfaced as a result of these migraines.

Other Alternatives: anything that involves talking WITH instead of talking TO is a better choice, in my book. Because we’re adults, right?

7. Well, at least it’s not [blank].

No. Just no. You do not get to use my condition to reinforce your concept of disability hierarchies. When my friend James was in end-stage kidney disease and on dialysis, people would attempt to console him with such platitudes. I have been on the receiving end of this “encouragement” as well. My migraines are debilitating. Full stop. Food allergies and Celiac disease are life altering. Full stop. Don’t compare us. Don’t rank us. Just don’t. It’s not a comfort. It’s ableist and it’s damaging.

In summary, don’t be a jerk. If you don’t know what to say, ask me how I’m doing today. Ask me if I need anything. And if all else fails, bring me coffee. Seriously. My neurologist said so.

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