Social Media and Migraine Stigma
Last updated: May 2022
Facebook, Instagram, Twitter. All great ways to connect with friends. To show what you enjoy in life and who you enjoy doing it with. Like most people my age, my friends and I love to take pictures and share them out on the web. But when my migraines turned from episodic to chronic three years ago, I quickly found out that your "friends" may not understand what you're going through.
I didn't share my migraine on social media
As I struggled to find ways to get the headaches under control, I chose not to share all the gory details on the web. I didn't want to sound like I was complaining. My "real life" friends knew what was going on, but I decided the other 587 people on Facebook didn't need to know since I never interacted with them outside of that medium anyway. Honestly, I was trying to avoid the endless comments of "Have you tried this?" or "My cousin cut out pickles and is now cured." I wanted to do it my way.
Pictures posted on good days complicated things
The migraine days far outweighed the good days. So when I did have energy, I would try to enjoy it with friends and family. And sometimes pictures would get posted. That's when I realized some people were not as sympathetic to my condition as others. I would get comments from co-workers or friends who knew me in everyday life as well as from social media. I'd hear...
- How can you miss work for a few days, but then go to dinner on Saturday night?
- You looked fine yesterday, why can't you get out of bed today?
- If you can't work full-time then maybe you shouldn't be taking a vacation.
One picture of a happy Katie and people assumed I must be doing better...or that I was faking the migraines.
Photos don't tell the whole story
What a picture on Facebook doesn't say is that I needed two naps today and a Percocet so that I could go to dinner. I didn't drink that night and I left before the rest of the group went to a club. A picture doesn't tell the audience that I haven't seen my friends in six weeks or been out of my apartment in five days. It doesn't say that it's never a vacation when I have to plan a trip with my doctor, bring extra meds, scout out potential ER sites if needed, make sure to book a massage or two to work out the kinks from traveling, skip more than half the planned activities and know that I'll possibly be in bed for days. But it's still important to me and my boyfriend to visit friends and family and to enjoy life the best I can.
Choosing what's posted to my social media
Would they prefer that I constantly post about how I'm in pain every day? It's just not in my nature to scream "woe is me." My solution? No more pictures, no more misconceptions. Change the settings so that I have to approve anything that has my name attached. Is that perpetuating the stigma of migraines? Maybe. But I also feel that I've spent more time in the past few years explaining the illness to the important people in my life. And I'm more open about my struggles on Facebook, hoping to educate someone I may have known from junior high or camp about migraines.
So if I do share a picture from a nice meal out or a shot of me visiting family in California, they are happy for me that I feel well enough to enjoy the day. I do post less nowadays though, wanting to focus on living in the moment with the people I love. Those that I feel still don't get it, well that's easy. It's called "de-friend." Who needs negativity?
I'm allowed to have good days
I'm allowed to have good days. I'm allowed to meet with friends and have dinner. I'm allowed to have a girls day out. I'm allowed to even go on vacation. I may have to sacrifice the laundry to have enough energy to do an activity for a few hours. I may need to bring extra meds with me and rest more when I travel. And I may only be able to do brunch with my girlfriends, but skip the mani/pedis. Just because I have chronic migraines doesn't mean that I shouldn't take advantage of the days (or just the hours) that I feel well enough to engage socially. I won't feel guilty about enjoying life when I can.
We're all allowed to enjoy the days, hours or just minutes when we feel well, without judgment from others.
How do you deal with social media and your migraines? Is there something fun you want to share that you were able to do in the past year even though you struggle with migraines? And I haven't totally forsaken Facebook. I have a professional page under Katie M. Golden if you want to Friend me.
In the past year, has insurance made it difficult to get your migraine treatment?