My Migraine Month
And this week's healthcare news.
This newsletter is a day late, again. I woke up on Friday with Still a Headache, after two weeks of having a migraine almost non-stop, and decided to go back to bed. I slept for three hours in the afternoon and then 11 hours last night; at this point I am basically a baby. (I feel a lot better now, too. Being a baby is good.) So I thought I’d explain my situation to you all, since this is probably going to come up again. There’s a shorter-than-usual collection of news articles at the bottom if you want to skip all this.
I’ve had migraines since I was about 10. They got really bad when I was about 15; at that point, I was getting them around once a week. Over the years I’ve had spells where I had more and spells where I had less, though I’d rarely go more than two weeks without one and the bad times are more frequent than the good. They got a little better when I started taking Aimovig, a newer type of preventative drug and, in fact, the first preventative drug approved specifically for migraines (the others were all drugs approved to treat other things that happened to help migraines). Then they got worse again. They got better a few weeks after quarantine started last year; I could go three weeks or so without one. Then they got worse again. And here we are.
(Before we really get into it, the caveats: My migraines are not as bad as some people’s migraines; some live with them literally every day. Having migraines is so much harder if you are poor and/or have to work a manual job, or don’t have a supportive family, or the myriad other kinds of privilege I’ve had. I’m just telling you about my experience because you signed up to read my newsletter, and I feel I owe you an explanation, not because I am the migraine sufferer you should pity most in America. I am, comparatively, extremely lucky.)
Most people who don’t have them are understandably pretty poorly informed about migraines. Many think it’s “just a headache,” and those people—you gotta stop with that! Migraines are the worst headache you’ve ever had, plus a whole host of other symptoms like nausea or vomiting; sensitivity to light, sound, smell, and touch; depression; even aphasia, or jumbled words. But my particular pet peeve is people who have gotten the memo about that bit, but not the other half of migraine life, which is the parts that are not the absolute worst you’ve ever felt but are still pretty shitty—and then use that information to say things like, “if you are at work you can’t actually have a migraine, because you would be crying or vomiting or lying on the ground” or “if you are on Twitter, you can’t possibly have a migraine, because the screen would hurt your head.” Bitch, I would be on Twitter if I was literally dead.
This attitude obviously makes life harder, but it’s also an internal conflict I have within myself. It’s not just the days where you truly could not sit up in bed without crying from pain; it’s the in-between days where you have to decide whether your migraine is bad enough that you can justifiably take the day off, or whether you could actually just cope with it and muddle on. The latter option might well make it worse, setting you up for further days of migraine. The former option might not prevent those later days of migraine anyway; you just don’t know. But it’s the pressures of work, or caring for children, or maintaining your home, or all the other bloody tasks that need to be done, that introduce a non-medical consideration. In an ideal world, every time your head hurt even a little bit, you would rest, to prevent the migraine and because a headache itself is bad. (This is the other thing—even if your migraine was “just a headache,” headaches suck!)
It is very radicalizing to have this chronic condition and to realize how dependent your health and life is on your employer especially in a country with no paid sick leave. In 2017, I interviewed a number of women with migraines and low-income jobs about how they cope. The answers were grim and predictable—bosses who don’t believe them; taking Excedrin every day to get through a shift; hiding their illness from coworkers or clients for fear of being judged or fired. Their stories are extremely common, though no less awful because of this; probably the most common migraine-having life in America is one like this.
I have been extremely lucky to have understanding bosses, generous paid sick leave policies, and union representation—all things that most people don’t have—and even those couldn’t protect me all the time. At my last job, I ran out of my 15 paid sick days by late August, and was denied requests for more to get me through the end of the year. Even before that, it became clear to me: If you have a lot of migraines, your work is probably going to suffer, and you are not going to be a great journalist. I would miss entire stories because I was too sick to work. I would file things late all the time. But if you have a migraine for basically two weeks straight, even “unlimited” sick leave starts to look pretty limited—do you really want to be the one to push that, or are you going to suck it up and try to work on days where your head still pounds?
At the end of the day, you are still making the calculation between pleasing your boss by being a productive worker, and your health—and if you choose the latter, you risk losing income and health insurance. Working is the only way to earn enough money to live at all comfortably; it’s not like the Social Security Administration is going to understand your migraines any better than your boss. One woman I spoke to in 2017 spent nine years getting disability income for her migraines, and after all that, it’s like a thousand bucks a month. So the calculation of “can I get through with with a migraine?” becomes a lot more loaded. There’s little to no recognition in society that this condition makes it hard for you to work as much as another person, let alone that “can you work as hard as it’s possible to work” should not determine whether you get to live a comfortable life. It’s up to your employer to take on the supportive role the government should have, and if they don’t, you’re fucked.
And so, here I am, self-employed and free from the boss. Except I still have to work. I have to write this newsletter, for money. And now, when I have a migraine, I can’t just tell my boss I’m going back to bloody bed and someone else can write about the news today. Almost every day since I launched Sick Note has been a migraine or headache day. Take a look at my Migraine Buddy tracking app—the lines are migraines. The redder the line, the worse the pain.
With the caveat that my tracking is not 100% accurate, and that the pain was not always at the highest level recorded, I think it is fair to say I am having a bad one. Again, some of these are “lying in bed with Frasier running for 10 hours while I drift in and out of sleep” days—and some of them are just days where my head hurts on one side, I feel vaguely nauseous, and it hurts more the more I try to do, but they aren’t terrible. Not as bad as a really bad hangover, for example.
I don’t really have much to say to you, the reader, about what this does to our relationship here, other than: Most of the time I am going to try to get as much as possible done even if I have a migraine that is less than full severity, but sometimes I will say “fuck it” and go back to bed, and the newsletter will be late. Sick Note will never be as frequent, or organized, or impressive, as others you might subscribe to. I came to the realization that the migraines meant I would never be any sort of star journalist years ago—I’ll never win awards, or break really incredible stories, and I could never do something like being a White House reporter, not that I would want to anyway—and I am comfortable with just being Fine.
I think Sick Note can continue to bring you weekly stories from the horrible reality of American healthcare while also allowing me to take care of my health. And I feel truly much more excited, and able to do that, for you than I have for any boss I’ve ever had. Now, I get sad when I can’t do something for the newsletter while I have a migraine because it’s something I wanted to do, not something I had to do to get my damn boss off my back. It’s not perfect, but it’s what we’re doing.
And now, the news. But first, Digby, my nurse, who often joins in my extended migraine naps.
There were several stories this week about the clear racial disparities in vaccine access across the country. In Miami, just 10 percent of vaccine recipients so far are Black, compared to 30 percent of the overall county population. The same pattern seems to be emerging in Washington, DC, where poor, mostly Black neighborhoods are far behind the wealthy white ones in Northwest.
And in Dallas County, poorer, minority neighborhoods with high rates of Covid-19 infections received far fewer doses. The county’s plan to try and overcome this disparity, by prioritizing low-income neighborhoods at the county distribution sites, was squashed by the state. Health officials at the state level threatened to reduce their supply of vaccine doses. That’ll show ‘em.
This dynamic is also, predictably, happening on a global scale, reports Politico EU: Poor countries are lagging far behind wealthy countries in securing and distributing vaccine doses.
Pfizer is shipping fewer vials of its coronavirus vaccine because of the “surprise sixth dose” that the vial contains, even though the sixth dose is hard to extract reliably. Because of money, is the thing, it’s about money.
Make sure to check out this pair of very good reports this week on how workers are being affected by Covid-19. The Philadelphia Inquirer examined how essential workers, including transit and airport workers, didn’t have enough paid leave to quarantine safely, meaning they returned to work and potentially infected their coworkers. And The Texas Observer reported on the lack of oversight of workplaces as sites of infection—and how, in Texas, most petitions for Covid-related workers’ comp have been denied.
An excellent article in Jacobin argues that officials are using social gatherings as a scapegoat for workplace infections, which they’re slow to limit—because “avoiding workplace exposure requires a shift in the balance of economic power.” Despite clear evidence that the virus spreads at work, “mayors and governors are reluctant to impose further economic interventions.” It’s certainly true here in Washington, DC, which is reopening limited indoor dining today. Restaurant Week is back on. Just giving the new, super transmissible B117 strain as much to work with as possible.
Doctors and staff at a medical facility in Houston were locked out this week, because the clinic is behind on rent. Patients were treated in the parking lot. According to the notice on the hospital’s door, it owed $461,301.24 in rent and fees. This is what happens when you don’t have a sensible model for financing healthcare, folks. “It sounds like they were in the process of converting (to a hospital), COVID hit and it was game over,” said Vivian Ho, a health economist at Rice University’s Baker Institute for Public Policy, to The Houston Chronicle. Just a very sensible and normal way to have a healthcare system here.
A horrible fact you might not have heard before is that more homeless people in Los Angeles die of exposure than in New York or San Francisco. Read more about it at LA Taco.
On that note, a homeless man in Indiana chose to be arrested rather than leave an emergency room, to get out of the cold.
That’s all this week because, as I said, head hurty want to go to bed—see you on Tuesday.