Posts filed under “Migraine”

Please visit me at home; everything is too much

The disability associated with severe cases of migraine extends far beyond days spent in bed. Online, people talk about the ways that migraine has rendered them housebound. Driving, for instance, can be difficult; shifting lights trigger migraines and drug side effects cause clumsiness. People with migraine stay home because they fear perfumes or other foreign […]

Boring patients with boring diseases

When focusing on the paper crackling between my chilled skin and the vinyl of the exam bed wasn’t enough to distract from the discomfort of my treatment, I asked my neurologist why there are so few specialists for migraine. I’ve been seeing a specialist in stroke for the last 5 years while I wait for […]

If you need so much help, why aren’t you asking for it?

In 2010, after a great deal of lobbying by an influential group of headache specialists, the National Institutes of Health (NIH) held a workshop on headache research that included a small group of people representing stakeholders in headache medicine: representatives from various NIH institutes, various headache organizations, headache specialists, researchers, and patient advocates. The meeting […]

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 […]

Energy meter

I found this in my drafts folder from a few years ago. Yesterday I made (simplified and adapted-to-my-dietary-restrictions) curry, soup, and shepherd’s pie. I also walked someone to the bus stop. That is all I did. Today I can’t get out of bed. Things are better now. But mostly because I’m usually not so foolish […]

Double disruption

Pain obliterates identity, but the loss of identity in chronic illness isn’t simply a function of pain. It is also a result of constant gaslighting about the experience of your own body. Pain is a mysterious and terrifying force. It makes sense that pain destroys us. Being told by a loved one that you are […]

My greatest fear is a fantasy

I started doing really well earlier this summer and had several weeks where I was able to do at least some work every single day. Then an environmental trigger I have no control over happened and I got stuck in bed again for more than 2 weeks. I’m slowly, slowly coming out of this cycle […]