I’ll wear the slinky dress and give up my art if you’ll invest in migraine research

In general, online communities embrace the biomedicalization of migraine, perhaps even more than their  doctors do, in the service of legitimating migraine as a socially sanctioned disease — since they extend the  neurobiological paradigm beyond what biomedical evidence currently supports. They do so because they believe that the neurobiological model is capable of remaking public perceptions of their moral character.

– Joanna Kempner in Not Tonight.

When your sanity and identity are at stake, it’s easy to accept whatever explanation gets you legitimacy and the associated treatment and social benefits. But it can backfire when incorrect models feed back into research and treatment and can be confusing when your own experience diverges from the model.

I don’t want to blame patients here. They need real treatment, real recognition, and real personal and financial support. The problem is that we exclude a heck of a lot of people who need it based on complicated and weirdly moral determinations of what makes a legitimate disease. So a sick person who is excluded from our concept of a legitimate disease can have their experience of their illness be pretty easily (and unconsciously) shaped by our messed up concept of what “real” illness is like.

She’s All That (1999) before and after

You know that moment in all those teen makeover romance movies when the girl comes down the stairs in a slinky dress with blow-dried hair and people are like woah I don’t even recognize you you’re so different and obviously amazing?

She hasn’t really changed, though it’s hard to walk in those shoes and the dress isn’t suitable at all for the painting she likes to do, but now you can see that she’s a real person, beautiful and worthy of respect and inclusion? That’s what I feel like migraine patients have had to do to get the limited legitimation they have – we put on the limiting neurobiological model so we could be recognized at all.