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Call for Submissions: September Headache Disorders & Migraine Blog Carnival

In honor of Invisible Illness Awareness Week, Invisible Illness will be the theme of September’s Headache Disorders & Migraine Blog Carnival, which I’m hosting here on September 8. Let us know your thoughts on having an invisible illness or respond to the 30 Things meme sponsored by Invisible Illness Awareness Week.

To join us, email the link to your post to kerrie[at]thedailyheadache[dot]com by 11:59 p.m. Pacific time on Friday, Sept. 5. Please include the following information with your submission:

(1) Your name as you would like it to appear in the carnival.
(2) The title of the blog post you’re submitting.
(3) The url of the blog post you’re submitting.
(4) The title of your blog.
(5) The url of your blog.

I’m looking forward to reading and sharing the submissions!

 

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Use Migraine as an Excuse, Recommends Advice Columnist

An advice columnist recommends using migraine as an excuse to avoid the potentially awkward conversation that would ensue if a female employee told her male bosses that she has to work from home one day each month due to menstrual cramps. And he does so in a remarkably insensitive manner:

I suggest, at the risk of overkill, concocting a migraine headache. Migraines can last for hours or for days; they’re famously disruptive to work schedules and social calendars. Also, it seems somehow permissible to use a migraine as an excuse because—well, I hear they’re awful, but—they’re not contagious and they don’t generally snowball into anything fatal, right? There’s no special worry about the mortality of the migraineur. Further, some back-on-the-envelope cultural analysis suggests some mystery and glamour to the ailment. It’s a serious person’s malady, with a Didion tinge of thoughtful drama.

Glamorous is not the word I’d use to describe the illness that has caused me to be housebound and even bedridden. I should start wearing silk pajamas and calling everyone “dahling.” I may not be able to work a steady job or form coherent thoughts, but at least I have a “serious person’s malady” — too bad few people take migraine seriously enough to recognize it is a potentially disabling neurological disorder. Perhaps if I play up the “thoughtful drama” people will understand how migraine has gutted my life. At least a woman can be spared the embarrassment of admitting that she menstruates by trivializing the severity of an illness that wreaks havoc on millions of lives.

Think I’m over-reacting? Here’s an explanation of the harm of using migraine as an excuse.

Want to leave a comment for the advice columnist? Following this link to the article on Slate. I have left a comment and expect people will soon respond that I’m too thin-skinned and need a sense of humor. Funny how people say that so readily until they encounter a topic that pushes their buttons.

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Migraine in “We Were Liars”

“I cannot recall a time when a narrator has brought this much focus on migraine disease with such apt descriptions,” Janet wrote in her Migraine.com review of the novel We Were Liars.

I had similar thoughts when I read the book a month ago (at Janet’s recommendation). The descriptions were so good that I highlighted passage after passage, eager to share them with you. Here are a couple:

“Welcome to my skull. A truck is rolling over the bones of my neck and head. The vertebrae break, the brains pop and ooze. A thousand flashlights shine in my eyes. The world tilts. I throw up. I black out. This happens all the time. It’s nothing but an ordinary day.”

“‘You have no idea what it feels like to have headaches like this. No idea. It hurts,’ I say—and I realize tears are running down my face, though I’m not sobbing. “’It makes it hard to be alive, some days. A lot of times I wish I were dead, I truly do, just to make the pain stop.’”

Then I got to the twist for which the book is known. The power of these incredible descriptions was diffused by a stereotype that, while not untrue, is a major contributor to migraine’s stigma. So much so that all the positive regard I’d had for the book’s depictions of migraine was gone. For me, no matter how elegant and accurate the descriptions, they can’t cancel out the harmful message I fear the book ultimately spreads about migraine.

I was so eager to have a wildly popular book raise some awareness of the severity of migraine that maybe I expected too much. Still, I’m disappointed. I’d like to say more, but don’t want to risk spoiling the book for anyone — it’s a great read.

That’s my take, which is probably a minority opinion among migraineurs. Have you read We Were Liars? What do you think of how it depicts migraine? (No spoilers, please!)

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Oxygen for Cluster Headache: Ask Your Senator to Sign!

A few hours remain to ask your senator to sign the letter requesting Medicare to reconsider covering oxygen for cluster headache! Please take 60 seconds to do so: just follow this link. The deadline for senators to sign has been extended to tomorrow, Thursday, May 22 at 5 p.m. ET.

The following senators have already signed on:

  • Coons (D-DE)
  • Johanns (R-NE)
  • Inhofe (R-OK)
  • Durbin (D-IL)
  • Tester (D-MN)
  • Warren (D-MA)
  • Markey (D-MA)
  • Fischer (R-NE)
  • Merkley (D-OR)
  • Manchin (D-WV)
  • Pryor (D-AR)

Several more are on the verge of signing, but need a little encouragement. Please make your voice heard — it will literally take a minute to improve the lives of people who are severely disabled by this horrendously painful headache disorder.

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An Urgent Request for Cluster Headache Treatment

Oxygen is one of the few effective cluster headache treatments, a viciously painful headache disorder that can be disabling. Several years ago, Medicare decided to stop covering it for cluster patients. The American Headache Society appealed to no avail. Now, Nebraska Senator Johanns and Delaware Senator Coons are trying to get the decision reversed and are currently circulating a letter for other senators to sign. The more senators who sign the letter, the higher the chance of success.

Please contact your senator TODAY to ask them to sign the letter requesting that Medicare reconsider covering oxygen for cluster headache treatment. And I do mean today — senators must sign the letter before 5 p.m. ET on Monday, May 19 Thursday, May 22. All you have to do is follow this link, fill out the form and click “submit.” The next page lists your senators as recipients and has a letter already written. You can edit the letter, if you’d like, or just add your name at the bottom and click “submit.” That’s it. I just did it and it literally took less than a minute.

Even if you don’t have cluster headache, please submit a request in the spirit of solidarity. Any recognition of the severity of any headache disorder and improving access to treatment is a win for all of us.

5/19/14: The deadline for senators to sign has been extended from today to Thursday. If you haven’t submitted your comment, you still have time! As of 8 p.m. ET today, nine senators have agreed to sign the letter.