This week marks two years since the beginning of my eight-month-long migraine. And it feels like everything about my life changed over that short span of time, from the big picture down to the small details. I could write a novel, I think, about everything I’ve learned.
But blog posts are easier to write, and better for people like me who have limited attention spans. And of all the thousands of things I could say, there’s one thing I’ve pondered the most as this anniversary approaches: the fact that I have a chronic condition.
Chronic migraine disorder. That’s my diagnosis. It’s both a simple and all-too-difficult concept for me to grasp, because my chronic migraine disorder didn’t start out as many chronic conditions do. Most people with chronic migraine develop it slowly, often over years or even decades. I went from having no headaches to being hospitalized with migraines in less than three months.
Things are not as traumatizing as they were then (praising God for that!), but the diagnosis remains the same. Which is weird, because each day has felt like an altogether different challenge than the day before it, but from the outside, the label hasn’t changed.
I’m constantly adding something to my personalized definition of chronic migraine, and sometimes, I get the sweet victory of taking something away. And my poor husband, I’m not sure how he’s tracked with my constantly changing perceptions of who I am and what we’re dealing with. “Chronic migraine” is (and I am, by association) an amorphous pile of incomprehensible goo.
So I can’t fully define chronic migraine, at least not in a way that I’ll still agree with tomorrow. But there are some things I’ve noticed that lie at the core of my chronic illness that haven’t changed very much over two years. These things make up a passable definition, what chronic illness means to me. Perhaps these ideas/themes will help you understand other people with chronic health conditions, but it’s hard to say. I can only speak for what goes on inside this one very sore head, after all.
Chronic illness thing #1: It’s wildly unpredictable.
Chronic illness is the ultimate champion of keeping me on my toes. I can be totally fine one minute and have a migraine the next, without warning. Sure, sometimes my body will give me more notice, but other times, it just doesn’t. So what I hope my friends have come to understand: my migraines aren’t under anybody’s control, and they’re not anyone’s fault. And all my plans come with an at-will cancellation policy.
Chronic illness thing #2: It’s more than one thing, and most of the things are invisible.
I can have a headache all day, but still have a great day. I can have no headache all day, but struggle with anxiety, depression, nausea, dizziness, or fatigue instead. These things can add up to be just as bad, or worse, than a headache. So understanding exactly how I’m doing on a particular day can involve asking a lot of questions, or just giving me extra grace because there’s likely something I’m struggling with that you aren’t seeing. (We should all give each other this sort of grace, no?)
Chronic illness thing #3: It can be really important, or really not.
There are some times when I feel pretty down, often (not always) after I’ve had a few migraines in a row. I need to talk and be encouraged by the people around me, lest I turn into a puddle. But there are other times when I want to blend in and be a “normal” person (if such people exist), even if I’m not feeling well, even if it’s just for a few minutes before I crash and burn. This isn’t avoidance, just acknowledgment that chronic migraine disorder is not all of who I am. Being “me without migraines” for a little while strengthens my soul, helps me cope, and gives me hope that one day, “me without migraines” and plain-old me will be the same person.
So there you go, two whole years of learning, boiled down to three short paragraphs. I hope it’s helpful to you in understanding me, or someone else you love. And if you know someone with a chronic illness, they’d probably love for you to ask what chronic illness means to them. They’d probably also like to have you on their team, even if in a small way. Because believe me, no matter how you define it, chronic illness is no walk in the park!