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

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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 was much anticipated; the headache research community had long wished that the NIH would devote some attention to its needs, and this was a chance to be heard. But attendees drew a blank when the NIH asked how the headache research community might foster partnerships with patient groups to increase funding, resources, and education. Although a few patient advocates were in attendance, none of them could name a strong patient-driven organization for migraine. According to one source, a frustrated officer from the National Institute of Neurological Disorders and Stroke (NINDS) retorted: if people with migraine disorders have all of these needs, then why aren’t they doing more to advocate for their cause? [emphasis mine]

– Joanna Kempner in Not Tonight.

I could have started a patient organization, but instead I spent two weeks trying to figure out how to pay for the part of my meds my insurance wouldn’t. I could have seen if the AHS had any advocacy positions I could fill in my community, but instead I spent 6 hours getting insurance to cover just one of my prescriptions. I could have talked to my MLA about getting an important treatment for chronic migraine covered under the provincial healthcare program, but I spent the time getting my meds moved around between pharmacies and trying to figure out why my insurance wouldn’t cover them.

I could have organized with my fellow patients to see what we could do to get migraine research properly funded, but I had 1172 days with migraine in 5 years. I could have gone to a headache conference, but was too sick to get on a plane for 4 years.

I tried to educate the people around me about treatment deficits for migraine and got recommendations to exercise and stay hydrated. I spent months getting accommodations for migraine in my workplace and then was told they weren’t relevant when I tried to use them. I might have started organizing for migraine when I was in my 20s, but I had been told so many times that I was weak and lazy and attention-seeking that I would ask myself if I was faking for attention while lying alone on the bathroom floor in the middle of the night. I tried to have a conversation with my neurologist about the lack of headache specialists and he told me migraine patients were boring.

Migraine patients are prevented from advocating for their cause. Like for many people with illnesses, the structure of our work and insurance systems eat up enormous amounts of time and energy that could otherwise be used for healing, community building, organizing, and advocacy. On top of all that, the dismissal and minimization of migraine as a disease in the public at large means that we often don’t feel like we can ask for help, let alone demand support. The general stigma of migraine means that seeking help and support is often cast as weakness, whining, and attention-seeking and advocating for yourself or other patients like you can cause you to receive even less support and help. And the lack of legitimacy migraine has in the medical profession means that it’s hard to get a diagnosis at all, let alone treatment. You’re seen very differently by your community and your doctor if you are organizing a 5K for Cancer versus a 5K for Migraine.

Also it is nonsensical and cruel to run medical research like this – giving money to diseases based on how well-organized and funded and photogenic patients are? That sets your healthcare system up to find and fund expensive treatment for rare diseases instead of reliable, affordable treatments and preventative public health interventions for the most common and disabling illnesses.

Huh

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

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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.

Energy meter

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The Sleeping Beauty, Edward Burne-Jones, 1890

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 as to try to cook three things in one day.

Double disruption

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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

My greatest fear is a fantasy

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Faking being sick so hard I get dozens of painful injections several times a year.

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 of migraine attacks. Days where I’m well enough to be up, to listen to an audiobook, to sit outside or go for a gentle walk, where I can exercise if I plan to sleep for the rest of day. I feel like I need to go back to work as soon as I’m able to be upright, but I feel so tired and sluggish and the pain begins to increase if I sit up for any length of time or look at a computer screen for long, or even keep any kind of mental focus on a problem.

I hate these interruptions. I lose my sense of flow, I have to rebuild my motivation, it takes tedious, precious time to reorient myself in my work.

The days I’m well enough to be out of bed but not well enough to work are in some ways harder than the days when I’m absolutely too sick to do anything. I feel incredible guilt and anguish and fear. Why am I not working? Am I lazy? Do I fake my illness so I can lie around doing nothing? Because I like listening to novels more than I like analysing data? If I was a real scientist, I’d want to work no matter how I felt, I’d push myself to work no matter how I felt.

This week I realized that these fears are a fantasy. Not just a fantasy in the sense that they aren’t real, but a fantasy in the sense that I want them to be true. If I were lazy and undisciplined and self-sabatoging, I could fix that. I can’t fix being sick.

Believing I’m lazy is a fantasy about being well.

Summer reading list – military scifi for people who hate military scifi

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The second book in Tanya Huff’s Peacekeeper series was released today, and I don’t know if I’ve got enough willpower to work instead of reading. I am SO EXCITED.

The Peacekeeper series is a continuation of Huff’s very excellent Confederation series. I was annoyed by The Expanse for awhile because it’s obviously an inferior knock-off, but I love scifi and its remixing nature so I’ve forgiven Abraham and Franck and am trying to enjoy The Expanse on its own terms.* I’d still much rather Confederation on tv, though.

I don’t really like military scifi and Confederation is definitely military scifi. But I love Confederation/Peacekeeper. It’s very character based – you’re thrown in with the characters and have to figure out the world the same way they do. And the characters are fantastic. Funny, cranky, realistic. The novels do a better job of capturing what (US) military life and interactions are like than anything I’ve ever read, despite (because?) Confederation’s military being made up of several very different species. The series has a good overarching story that reveals itself slowly without terrible cliffhangers, great fast-paced plots for the individual novels, and characters that are interesting and hilarious.

I recommend bumping this entire series to the top of your summer reading list.

UPDATE: I started A Peace Divided last night and yep, it’s great. This is the first of the series I’ve read instead of listening to, and, surprisingly I think I actually prefer listening to the series. Because it’s so dialogue focused and there is a relatively large cast of characters, it’s actually easier to keep track of what’s going on and to feel the story with a good reader doing different voices for all the characters. A heads up if you do listen instead of read – the narrator changes some of the accents, voices, and pronunciations between the Confederation and the Peacekeeper series. Threw me for a loop for a few chapters, but ultimately works out well I think.

*Except for the part where it’s gotten way more $ and attention because of fucking sexism** and I am royally pissed off about that.

**And maybe it would have been too expensive to do good aliens on tv.