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.
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