Thoughts on Living with Migraine: No Excuse for Poor Behavior

Living-with-migraineGreetings, everyone! I hope your heads are being as kind as possible to you today.

Perhaps it's due to getting older, or perhaps it's because the death of my husband last year has changed my priorities, but for whatever reason, I'm increasingly having problems with the way people "talk" and behave online.

I've observed conversations becoming increasingly petty, argumentative, profane, and even violent. People who have been friends (at least on Facebook) have been saying horrible things to and about each other instead of having the productive conversations that I used to see. I used to see people "agree to disagree" on certain topics, debate that topic, and remain friends. These days, it seems there are no limits to how nasty or personal the comments are, and the flaming goes on and on.

Some personal Facebook pages have turned into battle grounds. In the days leading up to Kavanaugh being confirmed to the Supreme Court, my own Facebook page got totally out of control for a few days. I shared a Facebook post that expressed the sentiment that lifetime appointment to the Supreme Court is so important that any allegations against Kavanaugh should be investigated. It didn't say he was guilty or that he was a bad man. It was simply pointing out the importance of a lifetime appointment. It said nothing about either the Democratic or Republican party (alphabetical order here). A woman who had been a Facebook friend of mine was instantly very, very angry. She asked if I'm a "liberal." I had to think about that one because I look at people and issues, not parties or sides. I ended up telling her, "I'm not a liberal or a conservative; a Democrat or Republican. I'm an American." People really started going at it on my FB page, being so very nasty with each other that I ended up stepping in and telling them to cut it out. In addition, I deleted the nastiest comments because they had no place on my Facebook page. Most of my Facebook friends became my friends because they have Migraine and follow my work. A colleague suggested that maybe some of the objectionable comments were written when people were in the middle of a Migraine attack. Well... maybe, but that's really no excuse for being downright nasty and disrespectful.

Sadly, I'm seeing a great deal of disrespect and anger even in Facebook groups meant to offer support and information to people with chronic diseases. I belong to and moderate some groups for people with Migraine disease and other Headache disorders. In one of them, a woman came to the group asking for advice in handling a difficult situation with her son's Migraine attacks and his school. Now, this is a topic where all the members should have come together to offer her constructive and productive advice, right? Many people did just that, encouraging the young mother and providing her with links to resources that could help her resolve the situation. Many of us were angry on her and her son's behalf. That's quite "normal" and natural, and that anger could have been channelled into support and advice. Unfortunately, some group members resorted to profanity and suggestions of violence against the school principal and others. Both of those behaviors are violations of the group's policies and guidelines, which everyone agrees to read and abide by when they join the group. Moderators removed the inappropriate comments. By the next day, more profane and violent comments had been posted. As a result, those comments were removed, AND the thread was closed to further comments. This meant that support and advice for the mother who started with the original post were cut off. It also meant that the moderators had to spend valuable time "policing" and "babysitting," when that time could have been better spent offering support and encouragement and posting links to valuable information for group members. Again, it's possible that the people who posted the inappropriate comments were in the middle of a Migraine attack or headache, but that's no excuse for the behavior. The group members are adults, they're informed of the policies and guidelines, and they shouldn't need babysitting.

The bottom line here is that Migraine isn't an excuse for poor behavior. Migraine can indeed affect our mood, making us feel cranky or even angry during attacks because of the fluctuation of neurotransmitters such as serotonin, norepinephrine, and dopamine. So, when we're feeling like that, the responsible course of action is to either not post and comment online, or to do so very carefully. This isn't a new situation. In June, I blogged, Living with Migraine: Sometimes We Need to STEP

I don't know if my reaction to this issue is influenced by age or by losing John last year. I do know that I no longer have any tolerance for this type of behavior. Live is just too short, and nobody needs the stress. As adults, we should be able to have a conversation in which we disagree with someone, but remain polite and respectful. Adults should be able to read and adhere to the rules of social groups such as Facebook groups without someone having to police comments, then take abuse from people who don't like the rules. If they don't like the rules, they're welcome to leave the group and find one with rules they can follow.

Freedom of speech is a vital constitutional right in this country. That said, it's not to much to expect common courtesy and mutual respect. It's not too much to expect adults to act as adults, accountable for their behavior. 

Please consider this as well — There is such a huge social stigma associated with Migraine disease. It doesn't help when people with Migraine are rude and behave poorly. It only serves to perpetuate and even build the stigma.

This post may offend some people. So be it. If someone is offended by my speaking out about unnecessarily rude behavior, they're probably not someone I need as a friend. 

Live well,

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

 

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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