Or Why Not Believing Patients Just Because They Do Their Own Research & Join Facebook Support Groups Is Absolute Bullshit
Back in the beginning of 2012 I was 19, going on year 2 of being bedridden, and still undiagnosed. I started seeing my first headache specialist after seeing three neurologists who all said they had run out of options. This doctor didn’t think a diagnosis was necessary because it wouldn’t change the course of treatment. I didn’t care and wanted one anyways. I needed to know what the hell was happening to me and desperately wanted a name for the thing that was taking over my life. She refused and told me to stop looking things up on the internet. Big surprise, I didn’t listen.
I decided to check the National Headache Foundation’s website again to see if I had missed something. This time there was an awareness ribbon on there I hadn’t seen before for Chronic Migraines. I googled it and it brought me to a Facebook page and private group called Chronic Migraine Awareness. I read the posts in the group and started to think that I had made a mistake by requesting to join. My doctor’s said I had headaches, not migraines. In fact, I was told the difference between the two is that a migraine ends after 72 hours (bullshit, re: status migrainosus) and that only headaches can go on and on (again, not accurate). I saw other people in the group sharing their story, so I decided to share mine. Someone commented asking if they could add me to their support group. They said they had a rare type of migraine called hemiplegic migraine & was pretty sure I had them, too. I shared my story in her group as well & between the two received tons of info from people clarifying everything…the differences between headaches and migraines, what episodic and chronic meant, all the different types and symptoms associated, and more.
I printed off all the articles from both groups, highlighted everything that matched up with my symptoms and brought them to the next appointment. She wouldn’t look at them, claiming it wasn’t necessary because it wouldn’t change anything. I fought with her until she did and left the appointment with a diagnosis of Chronic Daily Intractable Migraine with Status Migrainosus and Hemiplegic Migraine.
A version of this story was originally shared to Instagram for Headache and Migraine Awareness Month.