on thriving with chronic migraine

Thriving with chronic migraine

When I wrote “on giving up hope” I was working really hard to accept a new life with chronic pain. I had every hope that my quality of life would improve with new treatment options and time, but I was also swallowing the terms “life-long” and “incurable” with as much grace as I could muster, which meant giving up hope for any kind of cure or quick fix. There were so many enormous lifestyle changes and pain prevention strategies to conquer in order to live better with chronic migraine, and I was determined to embrace and master them. Minus the inevitable flub-ups that come with being human, I have done that, I and I am better off for it.

But lately I have been feeling that this just isn’t good enough. While working hard to let go of the old me and accept myself as I am has been necessary, I have also been feeling a dark cloud-like sense of resignation. The grieving, while it has gotten better, still feels pretty heavy and persistent. I am excited about cooking up new projects in the future, but still so bummed I can no longer take stuff on at full speed.

Then I came across a piece titled “Are you a Striver, A Survivor, or a Thriver?” by Cyndi Jordan. She talks about her journey with chronic migraine: how she went from struggling to live with the pain, to accepting it, to flourishing despite it, and I thought, you can thrive with chronic migraine?

After years of careful trigger avoidance, Jordan talks about how small her world had become. I can relate. Not making plans for fear I’ll have to cancel them, avoiding bright/stinky/loud environments, and managing my limited energy all lead to a somewhat isolated existence. Becoming fed up with mere survival, Cyndi wanted more. She writes:

I am more than my medical situation, more than any diagnosis, more than migraines. In addition to being a physical person, I am also an emotional, social and intellectual being living in community with family and friends. I do not have to be content with just striving or surviving, although both are thing that I will probably continue to do at times. My goal now is to thrive with migraines.”

This resonated with me, and l left me wondering how I could set such a goal for myself. How can I “thrive” with a frequently debilitating chronic illness? (Actually, by definition, with fewer than 15 attacks per month, my migraines are no longer chronic. However, I am currently reluctant to give up the title given that the impact of migraine on my life is still felt every day.)

Here’s how I plan to redefine success:

First of all, I must accept that “thriving” with chronic illness will look much different than “thriving” without it. Success will no longer be defined by hours devoted to extracurriculars, titles earned, or a robust social calendar. It will have absolutely nothing to do with money and power. Instead, it will be defined by the ways I can take care of myself and still contribute to the world, paid or not. Everything counts, not just the stuff I can put on a resumé.

Thriving will look like being social in ways that make sense: in small groups, online, and one-on-one. It means asking for accommodations, and fighting for them if necessary. It means being sensible about pain prevention, but not letting the fear of an attack run my life. I means being resourceful in order to earn some money in non-triggering ways.

Thriving with chronic illness looks like getting what I need, loving and being loved, and doing things that sustain me. It means not taking for granted the privileges that I hold, the ones that kept me safe, fed, housed, doctored, and cared for. It means heeding the wisdom of health advocates like Cyndi Jordan who have been to hell and back and lived to tell the tale.

Redefining success in this way might not actually change much about my life, except to silence my inner critic. Instead of the resignation or defeat that comes with comparing the present to the past, I intend to acknowledge, regularly –even when I’m sobbing into a pillow of ice packs, sure that THIS migraine is the worst imaginable feeling in the whole world– that I am doing a damn fine job of navigating this chronic pain thing.

I am more than my illness, and the things I am able to do now are even more precious to me than the things I could do before. I might not ever have a migraine-free life, but I can certainly have a good one.


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