How Do You Want to Be Seen?

How Do You Want to Be Seen?

Recently, I gave my first public talk about migraine to a group at our local university. I only had a very little bit of time, so I decided to talk about language, and the fact that the way we discuss migraine is changing. At our conference last March, all the migraine advocates gathered and Katie referred to the article by Dr. Bill Young about language contributing to stigma. That's why you won't find many of us using the term “migraineur” anymore, and you will see migraine “attack” (rather than "I have a migraine") and migraine “disease.” Words are important.

Migraine is often invisible

Another stigmatizing factor is that migraine disease is often invisible, especially on days when we're not suffering attacks but have postdrome or prodrome; allodynia; brain fog; nausea; or any of the multiple other symptoms we suffer all the time.

Because migraine brains are different. We see differently, we hear differently, we feel differently. Often it's nice to blend in and not be identified only with our disease. Who wants to be known as “that lady with migraine," or worse, "that girl who always seems to have a headache," along with the requisite eye-rolling?

When others don't always understand

On the other hand, it can be a problem when people don't remember or keep in mind that you're sick. I have a friend, L, who doesn't seem super comfortable with my migraine disease; when I'm down for a week, posting on Facebook about my pain level or an ER visit or how frustrated or sad I am, and then finally feel better and return to the world, it takes her a while to warm back up to me. She may ignore me and not meet my eyes for a day or two, while others will wrap me in warm hugs, say they were praying for me, or they are so glad I'm back, and that I should let them know if I need anything. So with L, I don't push it. I understand that illness may make her uncomfortable for any number of reasons, and that's fine. She's generous and kind in many other ways.

Trying to pull through

But last week there was a big misunderstanding. The kids in our group were competing (I'm trying to be a little vague here), and the results were a bit of a shock to everyone. X was absolutely devastated. L's kids came out ahead in the situation. It did take X quite a few days to recover; she'd already been experiencing some depression and this disappointment seemed to destroy her.

At the first gathering, after nursing X through her intense twelve-year-old devastation (twelve is just the worst age to be), insomnia had kicked in and I had slept only an hour or two in four days. I focused on what I needed to be doing, and held on to the sides of my chair and tried not to fall off of it. My heart was pounding, my face was flushed, my stomach hurt. My eyes prickled. I had a unilateral sleep-deprivation headache. I didn't really speak to anyone, and I probably shouldn't have come at all, but I was supposed to be there and I try to let people down as little as possible. 

Being misinterpreted

It must have looked like I was pouting and giving everyone the silent treatment. I took it for granted that most people there, all friends, would know I was suffering and would understand. But when I get home and was trying to get the girls ready for bed, I was alerted to the arrival of a Facebook message. L had interpreted my pained silence as giving her the cold shoulder because of hurt feelings.

When I explained about my insomnia, the response was that she wouldn't treat anyone that way no matter how much sleep she'd lost (although of course, she does, when I have been particularly ill, but I chose not to point that out). And insomnia is a crazy beast. It makes your brain turn against you, it's a similar feeling to being drunk, or like a waking dream. Plus it is comorbid with migraine and a common trigger, so the less sleep, the more pain. I didn't know what to do. I explained myself again, and yes, I was a little defensive. Nine days later and we're still not speaking.

More than just my disease

How do you want to be seen? How do I? Do I want to have people constantly thinking “sick sick sick” every time I'm around? Do I want to have to wear a sign listing all my current symptoms? Of course not. I would like the people who know me well to keep migraine in mind, and remember when necessary, like at that particular gathering. Realizing I might be feeling awful rather than deliberately treating a friend badly because our daughters had been competing (honestly, not like me at all). I don't want to be seen as not "normal" and only identified with my disease. I want friends to think of me as funny, warm, kind, intelligent. But a little empathy for my situation would still be nice. Sometimes it's a very fine line.

Have you ever lost a friend or had a similar misunderstanding occur due to migraine? Feel free to share in the comments.

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