Another migraineur has taken her life. I have few details, but those I do have paint a heartbreakingly common picture: She wasn’t taken seriously by doctors and did not receive proper care despite being in massive pain. She’s the second person I know of who has taken her life because of migraine in the last two months. I have to wonder how many others have done the same, but their deaths haven’t made the migraine news circuit.
I could rail against the medical system that knows so little about migraine, the lack of funding for research into this disabling condition, the majority of society who thinks we’re faking migraines to get out of making dinner, the stigma of migraine, people who can’t open their minds enough to even consider migraine as a debilitating illness….
There are plenty of reasons to be angry, but right now I’m just sad. Sad for all the people who are so desperate in their struggle with chronic migraine to consider or attempt taking their lives. It is such a lonely, terrifying emotional place to be. I know because I’ve been there myself.
There are a few things I want everyone with chronic migraine to know:
You are not alone. Connect with migraineurs on a forum like Migrainepage.com or the one on Migraine.com. Forums are the best place to find people who who understand the toll of chronic migraine and can help you cope with it. Talking with people who understood this lonely and stigmatized illness helped me through my worst days.
There’s always hope, hope for better health and hope for learning to live well despite chronic illness. I tried more than 36 preventives before finally finding some effective ones. I still have migraine attacks most days, but the pain is so mild that it feels like an entirely different illness. I am not “cured,” but I am grateful for every single day. Mindfulness techniques were a tremendous help in coping while I was still mired in daily pain of level 7 and higher. Start with How to Be Sickby Toni Bernhard; if you want more, see my recommendations in Migraine & Mindfulness on Migraine.com.
If you aren’t getting adequate treatment or feel like your doctors are dismissive, see a headache specialist. General neurologists get mere hours of training in headache medicine; you have the best chance of finding someone who truly understands migraine and its impact by seeing a headache specialist. Find specialists on the Migraine Research Foundation’s list of doctors certified in headache medicine, the National Headache Foundation’s physician finder, or the American Council for Headache Education’s provider search.
A therapist is a necessary health care provider. Chronic illness is a drag and migraine has its own infuriating stigma. This is a hard life to live and no one should have to navigate it on their own, nor should any romantic relationship or friendship have to bear the weight of it alone. Ask your doctors for recommendations, ask for suggestions on forums, or check Psychology Today’s therapist finder.
If you are considering suicide, contact the National Suicide Prevention Lifeline at (800) 273-8255. Trained staff will receive your call and help you sort out what’s going on. Even if you’re not at immediate risk of suicide, they will help you create a safety plan to keep you safe in case you ever reach that point.
Hang in there. The bad spell will not last forever. It may not feel like it right now, but you will get a break.
I fear that advice is oozing cliches, but each one is abundantly true. Keep in mind they’re coming from someone has had such severe, unrelenting chronic migraine that death has sometimes seemed a better alternative. Someone who is thrilled to be alive and experiencing what every day has to bring, both good and bad, after finally finding helpful preventive medications.
As my husband once told me, life with chronic migraine is way harder than any life should be, but that doesn’t mean it’s not worth living.