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 … Continue reading
March 19, 2018
March 8, 2018
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. … Continue reading
March 3, 2018
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 … Continue reading
March 2, 2018
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 faking because you’re lazy doesn’t. That does more invidious, insidious damage.
[P]eople who experience subjective symptoms that cannot be objectively confirmed by biomedicine often have their experience contested by medical professionals, employers, friends, and family. They experience a kind of “double disruption” in their lives. Not only does chronic illness disrupt their taken-for-granted world, but the skepticism that so often accompanies these illnesses can lead to a breakdown of the normal experience of self, leaving them feeling marginalized and alone. Since women are systematically less likely to be believed when they complain about pain, this experience is highly gendered. As sociologist Kristin Barker argues, when the world refuses to acknowledge and validate suffering, people can start to question their own sanity. Which is to say, persistent delegitimation—the experience of living among relentless doubt— can break down one’s voice, one’s sense of self, one’s very identity.
Joanna Kempner in Not Tonight