Migraine disease can make us feel very alone and isolated. That's one reason there are so many Migraine groups on Facebook and one reason why #Migraine is often the most Tweeted hashtag. We seek information, we seek support. We look for somewhere we belong despite this disease that so often makes us feel separated from other people.
I'm a member of quite a few Migraine groups on Facebook, and I manage a couple of them. I also talk with administrators of other Migraine groups, and we've been struggling with managing our groups. There are two main problems:
- Spammers. People who tell us they have Migraines and they want to join our groups for information and support. These groups have rules against spamming - trying to sell group members products or services. Yet, these spammers, once we let them into our groups, very quickly post links to sell things.
- People being just plain nasty in their comments to other group members. It's fine to disagree with something someone posts. It is, in fact, inevitable that people aren't going to agree with everything posted by others. That shouldn't be a problem, but it becomes a problem when people get rude and nasty. It's simply not necessary.
Spammers are a huge problem on Twitter too. I've seen days when spam Tweets outnumbered legitimate Tweets for hours at a time. Some promise a "cure" for Migraine disease, something that isn't yet possible. Others are selling crystals and other things on eBay, still others have nothing to do with Migraine, yet they use the #Migraine hashtag. Last week, there were a couple of days when women were doing that to promote their nude photo web sites.
Twitter also has its share of nastiness. A couple of weeks ago, someone Tweeted a link to a web site to me. She was trying to interest me in having surgery for my Migraines. When I wasn't interested, she said that I didn't want help, that I only "wanted pills," and some other pretty nasty things. She then said she didn't know anything about me. Even though she was being nasty, that made me laugh and shake my head. My Migraines are very well managed right now with the FDA approved Spring TMS device. I explained to her that I'm having only one or two Migraines a month, and that the Spring aborts about 85% of them. Why on earth would I want to have a surgery at all, let alone surgery for which there isn't any double-blind, placebo-controlled clinical data to support? The discussion got nasty enough that I blocked her on Twitter.
My point is that there's enough nastiness in the world without Migraineurs being nasty and rude to each other. We should be sticking together. We should be kind to each other. The fluctuation of neurotransmitters that occurs during a Migraine can definitely affect our moods and make us cranky. We need to be aware of that and either take it into account when commenting to other people, or wait until we feel better. Even if we're commenting to disagree with something someone said, it can be said in a kind and respectful manner. People who want to sell things should do so in places where it's allowed, not in places where it's prohibited. Anyone selling something needs to be honest and not claim to have a "cure" for Migraine. These people need to stop preying on people who are so desperate for relief that they'll try just about anything. They need to get a real job and be kind to others by not preying on them.
because a migraine is NOT "just a headache"