At WEGO Health we work with Health Activists from a range of condition-specific communities so it’s rare we have a personal experience with a specific diagnosis or condition – though we can often identify with the universal experiences or patients and needs of health communities. We recently held a Health Activist Roundtable focused on Migraine (in honor of National Migraine Awareness Month) and for once, I identified personally with the participants. I don’t have MS or Hep C or a lot of other things but I do get Migraines. Because of my personal connection with the condition, it was especially powerful for me to hear what our Migraine Health Activists had to say.
Here are some quotes from the session that have stuck with me:
“People who are trying to help Migraineurs think they’re trying to be helpful when they ask if they’ve found a cure for your migraines, but that’s not really how it works. The idea of chronic pain isn’t something people really understand.”
–Emily from www.thatmword.com and @emilyguzan
“When I was young, people kept telling me that I would grow out of it but that’s not necessarily true. It’s frustrating that they assume that it’s not going to be a monumental part of my life.”
–Gretchen from www.migraineshere.com and @GRautman
“Not even doctors know that the first line indication for migraines only works 50% of the time. We need to be honest about how difficult it is to treat migraines.”
–Pam from www.makethislookawesome.blogspot.com and @MakeThisLookAwe
“Many patients go to the ER and expect to be given a drug to get rid of the pain when what the doctor will give you is a drug to abort the process rather than the pain. It’s a very volatile situation – patients are primarily thinking about their pain and need to be educated about the process of aborting a migraine and healthcare providers can see Migraineurs as drug seeking.”
–Ellen from www.migraine.com and @Eschnak
If you want to see what else these Health Activists had to say, you can download our Migraine Health Activist White Paper. We’d also suggest checking out the National Migraine Awareness Month Event on Facebook for even more great content from Migraine Health Activists.