Why don’t you just live a little?

To the outside world, trying to avoid triggers sometimes seems like we are refusing to have fun. Some people judge us harshly just for trying to take care of ourselves. That's a big part of the stigma associated with migraine. As long as migraine is viewed as "just a headache" there will be those who will not accept our limits as legitimate. I've been called a few unflattering names because of my insistence on avoiding known triggers. How about you?

The truth is that I have tried to let loose, throw caution to the wind, and just embrace whatever comes. It does not work. The better I feel, the more likely it is that I will relax my personal rules about trigger avoidance. It is in my nature to stay up late, avoid drinking water, eat processed convenience foods, and otherwise ignore my body's needs. The price for staying migraine-free is perpetual avoidance of all known triggers. Doing this allows me to live with fewer migraine attacks so that I can participate in more of life. I don't get the luxury of a carefree lifestyle.

This is particularly troubling for those closest to me. They remember an earlier time when I was not so careful to avoid triggers. In fact, I wasn't even aware that I had triggers. They forget the many times we were forced to leave an event early because of migraine. It is hard on my loved ones to accept that there are things I will never do again. They also suffer the consequences of stigma. Sometimes they are accused of enabling me to stay sick. The hurts is even worse when it comes from loved ones.

At my in-laws' family reunion this summer, the party continued well after dark with bonfires, hayrides, and lots of beer. If smoke, alcohol, and lack of sleep were not such strong triggers, it would have been a lot of fun. Nearly everyone stayed outside. Most understood why I stayed indoors and watched from the window, but a few were critical of my "unsocial" behavior. Some split their time between the party outside and visiting with me indoors. My critics refused to come inside, commenting that I should "just relax" and "live a little." Those critics also turned on my husband when he chose to stay indoors to keep me company.

I've come to expect this response from certain people and have distanced myself from them. Their opinions are not nearly as hurtful as they once were. Still, it does sting that there are people close to me who do not support my efforts to avoid a migraine attack. I wish that everyone understood how important it is. Unfortunately, I cannot change hearts and minds that are closed to the truth. I like to have fun, too. Yet I will not be swayed by peer pressure to do so at the expense my own health.

I know I'm not the only one who faces this. We all have people in our lives who have a negative view of the things we must avoid because of migraine. When educating someone becomes futile, how do you handle it? When someone insults you for doing what is healthy, how do you respond?