I’m disappointed that…
- there are over 37 million migraine sufferers in America, yet funding for research for this disease is less than $0.50 per Migraineur.
- for so many people in pain, there are less than 500 certified dedicated headache specialists practicing medicine in the US.
- the one big migraine awareness challenge on social media was a simple #shadesformigraine/#shades4migraine post, where we asked friends and loved ones to wear a pair of sunglasses in a place they wouldn’t normally, and then post a pic of it on social media with the hashtag and also tagging the migraine sufferer they love. This challenge happens on the 21st of June every year, the longest and brightest day of the year, to show support for those who suffer migraine because one of the main symptoms of migraine is light sensitivity. Although ShadesForMigraine reported more people participated this year than previously, not one of the people I challenged to support me in this participated. And it’s not like I asked them to dump a bucket of ice over their head; that would actually be painful and inconvenient.
Today, I’m actually angry. Not only is migraine misunderstood, underfunded, and dismissed by people who don’t get it, but now leading magazines like Elle and Cosmo have turned it into a joke by encouraging people to post pictures of themselves in the #migrainepose. It’s demeaning, it’s dismissive, and it shows the level of disrespect given to those who suffer daily from unrelenting pain, nausea, visual disturbances, and sensory overload.
Words have power. Every time you accuse someone of giving you a headache or migraine, you minimize the fact that migraine is a genetic disease. Every time you suggest someone is faking a migraine, you increase the stigma of this disease. Studies repeatedly show migraineurs are more likely to fake being well than being sick. Migraine sufferers constantly attempt to hide their symptoms in order to save their jobs and to be included in their social circles. There is currently discussion among the more politically correct that one shouldn’t say someone with migraine disease is a “sufferer” or a “migraineur,” but as a migraineur I can tell you I suffer with this disease. Please choose your words wisely, and say what you mean.
Those of us who are cursed with migraine disease know it is not just a bad headache, a cry for attention, an excuse not to do something, nor an attitude problem. We are held hostage by changes in weather, flashing lights, loud noises, and many smells. Because of those things I, and 37 million others, have missed out on holidays, weddings, graduations, and celebrations of all kinds. Additionally, many have lost jobs, have lost relationships, and as much as it pains me to type this, have lost hope and have succumbed to suicide. This is not just a headache!
If you still think striking a #migrainepose is cute, I would like to buy you a coffee and explain to you all the reasons why it’s not.
If you want to know more, check out:
I think you’re right that migraines are still very misunderstood. As one of the people who failed to post a pic in my shades, please accept my apologies. I had it on my calendar but the day came and went before I had my “V8!” moment, reminding me to snap a picture. Hopefully, I’ll do better in the future. Sorry, my friend. It is bizarre to me that in a time where media seems so focused on hearing a diverse cacophony of voices that major magazines would resort to making fun of something they obviously don’t understand fully, like many of the rest of us. Knowing you personally, I am aware of how frustrating and debilitating this disease is. Blessings.
Thank you.
I really appreciate this post of yours. My mother has stoically suffered horrible migraines her whole life and I have always felt so helpless when she has one. In the past couple of years I started getting ocular migraines, which leave me unable to see for about an hour. My suffering is a tiny fraction of what you experience, but the disabling aspect is frightening.
I need to find some good sunglasses, as the problem is triggered by light.
Thank you again and I hope you are having a symptom-free day!
Martha, check out FL-41 lenses by Axon Optics or TheraSpecs. I have worked with both companies, and highly recommend them both. Light is a huge trigger for me, and I’ve dealt with ocular migraines also, the worst lasting six weeks in my left eye. It was terrifying as, I thought I was going blind permanently. The pic of me in this post shows me modeling a pair of TheraSpecs that are wraparound, FL-41, and polarized. There’s a ton of articles explaining the reasons and research behind the FL-41 tint on both companies’ websites. Good luck!