Living with Migraine: Sometimes, We Need to STEP

Living-with-migraineWith the growth of the Internet, social media outlets such as Facebook have become a primary source of support for many people with Migraine disease, especially those of us with Chronic Migraine. There are countless Migraine support groups on Facebook. Thus has been great for so many of us because attending support group meetings in real life often doesn't work well. We're either too ill with a Migraine to attend, or - if we're feeling well - decide we have other things that need to be done while we feel up to doing them.

There are days, however, when I simply shouldn't post on social media, or at the very least, should do so very carefully. Those are days when I'm tired or don't feel well, and I'm... well, to put it politely, cranky. On those days, I'm overly emotional, and I tend to take things too personally. That means I could end up saying the wrong thing to someone, or say the right thing, but say it poorly. Can you relate?

From what I've been observing in some of the Migraine groups on Facebook, I'm not the only person with Migraine who has this problem. Unfortunately, when one person comments on a post in a not very friendly way, things tend to escalate. Then, moderators have to get involved, comments get deleted, and matters can get heated. It's uncomfortable for all involved when this occurs. 

I've adopted a habit for social media on days when I'm cranky, and I've put a big note on the bulletin board next to my desk to remind myself. I call it my STEP method. When I'm having a cranky day, and I'm posting to social media, before I hit the button to publish my comment, I:

Stop

Think

Edit the comment, if necessary, then

Publish the comment.

Nobody has a good day every day. We all have our "cranky" days, even though we all want to be kind and supportive of others dealing with Migraine disease. If you find yourself in a similar situation on social media, maybe you'll try STEPping with me?

For an interesting look at the issue of taking things personally, please see Migraine Agreement #2: Don’t Take Migraine Messages Personally.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

MigraineNinja200

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja


Living with Migraine: We Must Stop Stigmatizing Each Other

Living-with-migraineResearch has shown that the stigma associated with Migraine disease adds to the burden of living with Migraine. I'm sure that comes as no surprise to anyone with Migraine. What may come as a surprise to some of you is how often people with Migraine stigmatize each other. 

We're all different

One of the best examples of people with Migraine stigmatizing each other occurs pretty much every time I see an online discussion about Excedrin Migraine or the commercials for Excedrin Migraine. Invariably, someone will say something along the lines of, "If Excedrin works for you, you don't really have Migraines."

Seriously? That's just not true for everyone. The truth is that we're all different, and our Migraines are different. Although Excedrin Migraine isn't any more helpful that breath mints for my Migraines and maybe yours as well, for some people, it's all they need. Some people have only a few Migraines a year, and they're very mild, but they still have Migraine disease and deserve our respect and support.

Another example is people saying that someone can't possibly be at their computers or using their phones to be online when they have a Migraine. Again, that's not true for everyone. Some people do experience photophobia (sensitivity to light) during a Migraine that's so severe that they need to retreat to a dark room. Others don't have that problem and may use the internet as a distraction to keep them occupied while they're waiting for their Migraine medications to work.

Finally, yesterday, I posted an article, Going to the ER for Migraine Is Not the Best Choice, to a Facebook group. In a nutshell, the article says that there are times when we'll all need to go to the ER, BUT it's not the best place for Migraine treatment. It also says that we should have a full treatment plan that includes preventive and abortive treatments as well as rescue treatments to use, when our first-line treatments fail, to try to keep us out of the ER. It also suggests talking with our doctors about when we should go to the ER. The response from some people was absolutely brutal. They said I didn't know what it was really like to live with Chronic Migraine, and said all kinds of other nasty things that I'm not going to repeat. You know what? I had lost my job and was confined to bed by Chronic Migraine before some of those people were born. They misinterpreted what I said, went on the attack, and stigmatized me. With people's emotions running high, I asked the other moderators of the group to handle the issue because I felt people didn't want to hear from me, but the damage was already done. 

Sometimes, as was most likely the case with the article I posted, people are in pain, and they lash out. I get it. Still, would we like others to treat us in that fashion? I don't think so. We sometimes forget that posting to social media carries a responsibility, a responsibility to act in a courteous and civil manner. People are forgetting that. I have my own theory about one reason for that, but that's not our topic today. Here's a thought - If we're in pain or feeling especially vulnerable or emotional, maybe those are times when we shouldn't post to social media. 

The bottom line

The bottom line is that we all want to see the social stigma associated with Migraine disease diminish and disappear. Right? There are advocates who dedicate their careers and lives to that purpose. BUT... It's not going to happen until we stop stigmatizing each other.

Live well,

 because a migraine is NOT "just a headache"
Visit MigraineDisease.com

 

MigraineNinja200

 drawing on our inner Ninja to live a full life
Visit Migraine.Ninja