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Migraine Continuum: Episodic & Chronic Labels Are Inadequate

A perpetual migraine for 18 days followed by eight days with a new migraine each day — that’s what I’ve just come out of. You think I’d be used to it, having done the severe constant migraine thing for a decade with only slight, infrequent reprieves. I suppose I was, but having had a break and then returning to it, I can see clearly how incredibly draining it is to have a migraine all the time.

Even when I felt my best this spring, I still have a migraine attack more days than not. For me, that’s easy to cope with compared to having a continuous migraine. It’s hard to articulate just how physically and emotionally taxing it is to never get a break.

Migraine is talked about as episodic or chronic, but those terms don’t account for the tremendous variation in quality of life. Someone can have a few migraine attacks a year or seven a month and still be considered episodic. Someone with chronic migraine can have eight migraine days and 15 headache days a month or have a non-stop migraine. How can two categories possibly capture that range?

Some researchers do break down episodic migraine into low-, medium- and high-frequency, though there’s distinction between degrees of chronic migraine. Hmm, degrees of migraine. I like that framing, though I wonder if it is possible to talk about degrees of migraine without people ranking their pain in relation to that of others.

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Invisible Illness Awareness Week

For National Invisible Chronic Illness Awareness Week this week, its sponsors at Rest Ministries and volunteers have created and compiled a tremendous array of resources for those of us with invisible illnesses.

  • Presentations from the virtual conference cover topics from relationships to work to identity. Several presentations remain this week, but all of them are archived for you to listen to whenever you need a boost.
  • The website has a large collection of articles on a wide range of issues that folks with invisible illnesses — and those who love us — confront every day, like the difficulties of explaining an illness to friends, how to respond when someone is insensitive, and how to help people with invisible illness.
  • The statistics and stories section has some shocking information about chronic illness. Like that nearly half of Americans have a chronic illness, 96% of which are invisible, and the divorce rate among the chronically ill is higher than 75%.

Poke around the site for a bit. I bet you’ll learn something new that will help living with an invisible illness a little easier.

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“She Never Feels Well”

This week I was supposed visit my sister and her family, who live three hours away. With how bad my headaches have been the past couple weeks, I decided it was better to stay at home.

Last night I called to tell my sister I wasn’t coming and heard my nine-year-old niece ask why. To my sister’s response that I didn’t feel well, my niece said, exasperated, “She never feels well.” All I could say was, “Yep, she’s right” and apologize for canceling my trip.

How do I explain to a nine-year-old (and her 11-year-old sister and 7-year old brother) that the headaches I get when I visit them are with me every minute of every day?