Migraine Awareness Month #26: From The Outside Looking In
Here at Migraine.com we’re participating in the National Migraine Awareness Month Blogging Challenge during the month of June. All of the patient advocates are taking turns to cover the prompts, and today is my turn.
Today’s prompt is: “From the Outside Looking In.” Write about what you think your family, friends and others think a day in life, a day with Migraine disease, is like.
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By and large I think people who have experienced a migraine attack just get it in a way people who have not can’t. People try to understand and many of them are wonderfully empathetic. They can compare it to pain they’ve experienced and can see by watching us how awful it really can be. And I think that’s all we can ask: For them to try to understand the best they can.
By the same token, I think it’s difficult for people who experience migraines on an infrequent basis to really get what it’s like to experience them on a chronic basis (15 or more attacks a month), as so many of our patient advocates and readers here at Migraine.com do, myself included. It wears down on you, which compounds the impact of each individual migraine. You rarely get the chance to fully recover from an attack before you experience another one. You can’t always take the meds that help you most because of financial constraints, insurance coverage limits and the need to avoid Medication Overuse Headache. Before you know it and despite your best efforts to have a real life, every moment of your time becomes consumed by a phase of the migraine attack until it all sort of melds together in a symphony of agony and loss of control of yourself and your life.
No doubt anyone who even tries to get what it’s like to live with migraines on that frequent a basis has some idea how horrible it is. Clearly they see that we have many limitations and deal with a lot of pain and discomfort. But what about the things we don’t let them see, like the diarrhea, the vomiting and dry heaving for hours on end, the fainting. All that stuff is really humiliating, but if we aren’t open about it, they will never see or understand the full range of our disease. And just how embarrassing and demoralizing it can be. Only a few people in our lives know about that stuff, usually just our parents and spouses. Which is why I think it’s so funny when a woman is super careful about something like not farting in front of her husband. In some ways I wish I could go back to a time when my husband and I still had that facade of perfection. Unfortunately the man has cleaned up my vomit and poopy pants. Many, many times. I kind of like the idea of being able to keep up that facade with other people. Even if it limits their understand, keeping the really bad stuff private allows me that.
If any of you are on Pinterest or visit other blogs and sites you may have seen these photo collages depicting the differences in perception of a particular career, condition, relationship, etc., among various groups of people. I thought it would be fun to make one to accompany this post.
What do you think other people think a day with migraine is like? Do your friends and family get it? How much do you share and how much do you keep private? Please share in the comments.
National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger’s Challenge is initiated by www.FightingHeadacheDisorders.com.
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