Would the migraine world be much different if migraine hadn’t been so invisible for so many years? If it hadn’t been considered a woman’s ‘headache,’ particularly because often it was wrapped around hormones and the menstrual cycle? If more men had migraine disease or more men had spoken up about it over the years? If women had been more vocal and assertive – or aggressive – about their real symptoms? If Virginia Woolf, Joan Didion and others had been men?
Yes, it would.
I was raised as a good little Midwestern girl, to be seen and not heard, to have a superwoman’s work ethic, an obligation to help others and to be responsible and accountable for my actions. Not that any of these things are bad, just that for 15 years or so, this is why I listened to doctors who said my horrible ‘headache’ attacks were just a part of menstruation, that I needed to relax and ‘stroke my chin’ so I wouldn’t develop ulcers to go with that ‘headache.’
All those years of hearing in some way or another that migraine was my doing – you need more exercise, more sleep, better food, more relaxation, change your personality – blah, blah, blah… while I stoically suffered through too many two-to-three-day sick episodes per month with pain, nausea, diarrhea, and life between two sheets in a dark room with my friends, the ice packs and vomit buckets.
At some point during the late 1980s I described one of my migraine attacks to a friend, a man, who said he had experienced a headache attack like that once, went to the emergency room, got meds that put him out for two days, headache lifted, and fortunately he’d never had one since. Wow. Why didn’t I think of that? I could go to the 
emergency room? Someone would help me? How stupid and naïve I was…
Of course since then there have been plenty of horror stories about people’s experiences with ER trips for migraine, and there again the invisibility of migraine becomes a haunting disadvantage. What if thorny, ugly, disgusting, red-hot maggots came crawling out of your eyes and ears and navel – would that suffice to convince someone else of your state of physical suffering?
This is not to take away from the physicians and researchers who have recognized that migraine was not just a headache, researched and tried to find causes and answers. There have always been devoted physicians and medical professionals interested in and dedicated to migraine and helping people with it, but somehow they weren’t heard loudly enough, either. Migraine still is invisible in many ways, but at least it seems to be garnering more serious attention in the media, the medical field, and circles of migraineurs’ family and friends.
Along with the good press, however, comes the bad – the sensational and the quack cures. People who don’t have migraine who fake it to miss work or use it as an excuse to try and obtain medications cannot know the damage they do to people with migraine disease.
People who think they know something about migraine and try to give simple answers and cures also don’t realize the impact of their words.
People who use migraine as a metaphor for minor irritations or everyday challenges have no idea how they trivialize the suffering of others.
But most important is when people like me with migraine suffer silently, don’t assert ourselves, fear being (or can’t be) honest because we risk losing jobs or friends, fail to find our voices, or otherwise don’t help to remove the insidious cloak of invisibility from migraine disease.
Yes, we can help ourselves: learn everything we can about our disease, practice healthy lifestyle habits including appropriate diet, sleep and exercise, work with competent medical professionals, and try to find traditional and nontraditional treatments that may help us manage our symptoms. And we can keep trying to help others understand.
But please, no more good girls.
[...] And one rule that the world of medicine continues to need to be reminded about–men and women should be treated equally (In other words, there’s no such thing as a “woman’s disease” just because you are a woman in pain.) Migraine blogger, Betsy Blondin at Migraine Journey offers a great explanation of her experience in her post If Women Ruled and Migraine Had Maggots. [...]
I could almost feel the thorny maggots! You’re so right! Silence is not always golden.
So true, Jill — sometimes we don’t do ourselves, or our diseases, any favors with silence…
“thorny, ugly, disgusting, red-hot maggots came crawling out of your eyes”… If only I had these crawling out of my eyes when I saw that neurologist that told me “to look out at the bright sunny sky and be happy to be alive”; I’m sure he would have had a different opinion and actually helped me, rather than refusing to do anything but send me on my way to suffer in pain alone.
Right – if he had only known the pain it might cause to look out at the bright, sunny sky! It’s nice to have health care pros who also have migraine so they can relate and treat appropriately. Thanks, Melissa!
Betsy – so well said! I have felt those red-hot maggots so many times! If only others could see them.
I, like you, had never even thought of going to the emergency room for many many years, though I vividly remember begging my husband to do something, anything, to end the pain. What did I think he could do? We get so trapped inside our own hurting heads!
I hope you, and your readers, will consider joining us on the Managing Life with Migraine Teleconference this month (Sunday 8/30) when Professor Joanna Kempner will be talking with us about Migraine as a Womens’ Disease, and the Sociology of Migraine Care.
Thanks for a great post! I’m with you, no more good girls!
- Megan
Thanks, Megan! Your next Migraine Teleconference sounds great – I plan to participate! There certainly is a sociology of migraine care, isn’t there?
Here’s to No More Good Girls!
Great post Betsy! For years I didn’t consider the ER for Migraines either; my mom never went – and she’s a Registered Nurse! I thought Migraines were just something I had to suffer with in silence. I’m so glad I grew out of that! No More Good Girls
Thanks, Jasmine – I’m glad we outgrew that, too! Hugs!
Betsy, you are inspired! I bow low to you my friend, for you have just put into nicer words the nasty little thoughts that have been jingling around in my Migrainey-addled brain as I try to survive the beginning of my third dark and foggy week of pain/meds following 2 new hope-smashing doctor-fails and too many well-meaning relatives.
What a blessing to have a hubby who encourages me NOT to be the quiet good girl anymore. He is my voice when I have none.
Now, if the ER’s would only treat Migraineurs with respect too…
This post reminded me of two of my favorite sayings –
“Well behaved women rarely make history”
and
“No wind, no waves”
Oh, Ellen — I wish you the quickest path out of that dark and foggy period you’re in! And listen to you, even into the third week of it, you are still cognizant of what you are grateful for and two of your favorite quotes. What strength! Namaste.
Good post, Betsy. I recently had my first 2 migraines. They come from pressure on my top vertabrae due to RA in cervical spine.
I think we have been on the same wavelength this week. I wrote a similar post about the real RA versus the mythical version. The reason we have to persist in exposing the real version (for each of us), is that there is not much concern to cure what is seen as just “whining.”
You’re right, Kelly. And sometimes that becomes another cycle — we keep quiet because we don’t want to be “whining” but then even our loved ones don’t know how we are hurting.
I’m sorry to hear that your RA has caused you migraines and even more pain!
I just read your post – yep; great minds think alike. Dragon slayers or warriors, but no more good girls!
You sound like you have a lot of support and to be thankful for – a wonderful husband and children.
I hope that today is a good day for you and you are able to enjoy it and do something you like and not hidden in a dark room in pain.
I wish you all the best of luck.