I’ve only been on Twitter-X for a few weeks, and it’s been a rollercoaster.
On the upside, whilst there’s not a lot of coordinated community activity around #migraines (that I can find), many people have been very generous with their time and answered my questions (about things such as injectable preventative migraine medication). There’s a lot of empathy for other people’s pain, and lots of love-hearts flying around which is great to see.
On the other hand, the mood on Twitter-X can get a bit dark, as can the language and the humor. Some of the ‘jokes’ people use to explain the pain they’re in and how they’d like to get rid of it can be disturbingly graphic. Whilst it’s often highly relatable, I don’t think it’s healthy to keep thinking along those lines, or sending that vibe out without a safety net to help those who might read it.
Worst of all, there’s some upsetting commentary going on out there. Of course, I’m distressed that there are so many people posting about their bad migraine days; it’s always bitter-sweet to be part of Team-Migraine. What’s particularly maddening however, are some of the replies I see on posts.
Without risking identifying anyone (shame is never my game), there was one post that I’ll simplify to: “why do so many girls get migraines these days?”
Setting the (accidentally?) disparaging label of ‘girls’ aside for a minute, it was the ‘answers’ that shocked me. They ranged from realistic but judgmental one-liners through to the terrifying. The reasons ‘why so many women are getting migraines’ can apparently be summarized as follows: horrible diets, a stressful lifestyle, birth control, too many frappuccinos, we’re looking for sympathy, mental health issues are on-trend these days, and something to the effect of “women have always been convinced they are on the verge of death; it’s what they do.”
Really?
It’s 2024 but some of these responses seem positively medieval.
Now to be fair, I did not take the time to open the pages of the posters (I frankly didn’t want to spend another second with them), so I can’t possibly know to what extent they were being ‘funny’ or ‘sarcastic’. Still. Really?
My advice is that if you do go onto social media looking for support and answers for your chronic pain condition: keep your guard up. It’s unbelievably triggering to read that people out there believe your pain is a trendy overreaction designed to get attention.
Know that there are plenty of people here who ‘believe you’ and ‘believe in you’. We empathize with what you’re going through, because we’ve been there too. Most importantly, and I can’t believe I have to say this – we know that your pain is ‘real’.
Take care peeps, Linda x
The Mindful Migraine 
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