Given the proliferation of information about migraine that’s available these days because of the Internet, you’d think that our families and friends would “get it” by now. That’s not, however, what I’m hearing from my fellow migraineurs. For example, a couple of days ago, one person said, “My family just doesn’t understand, and I can’t get them to read anything online that might help.”
I wish there were a foolproof answer for this problem, but there simply isn’t. People can be difficult to understand. Relationships are difficult, and maintaining good ones takes work on both sides. As much emphasis as many of us place on family, relationships with our family members are still basically relationships between us and another person. Friendships are the same way.
Though it’s sometimes painful to admit it to ourselves, some people are more giving and understanding than others. Some people feel that only someone who has experienced migraine for themselves can understand what a migraine is like and the impact of the disease on our lives. Experience may be the best teacher, but if someone wants to understand what it’s like to live with migraine, it’s possible for them to learn and understand pretty well.
Our situations living with migraine can have a huge emotional impact on us. That makes it difficult for many of us to try to explain migraine and its impact without becoming emotional. That, in turn, can make it more difficult for less emotional people to really hear what we have to say. In such cases, an explanation from an outside party can help. To assist in such situation, I’ve written a letter you can use, RE: Understanding Migraine Disease and Migraineurs. It can be emailed to people you want to read it, or you can print it and give it to them. Download RE: Understanding Migraine Disease and Migraineurs. If those close to you won’t go online to read, this letter lets you take it to them.
What If They Still Don’t "Get It?"
Let’s talk very openly on this topic. There’s only so much we can do. Some people simply aren’t giving enough to learn about migraine and its impact. They’re either open and giving enough to learn, or they’re not. AND, that’s NOT on us. Allow me to give you some examples from my own family.
- My maternal grandmother never had a migraine in her life, but when I had a migraine, she was absolutely wonderful. She let me lie down wherever I was most comfortable. She closed the draperies and turned off the television or radio, and brought me a big old bowl that I could vomit in if I couldn’t make it to the bathroom. She didn’t fuss over me, but would stay where she could hear me if I called for her.
- My mother, on the other hand, had severe migraines herself, but was more harmful than helpful when it came to my migraines. She insisted that I go with the family to visit my grandfather every Sunday, regardless of how I felt. That did stop the day I leaned up over the back of her seat in the car and vomited all over her. During her later years, when I drove her wherever she needed to go, she always got into my car bathed in strong perfume, despite knowing it’s a migraine trigger for me. One day, I’d finally had enough, and I refused to let her into my car. From that day on, she had to find someone else to drive her or call a taxi.
- When my migraines went from episodic to chronic, I was able to go less and do fewer things. My so-called friends soon quit calling or returning my calls. My friends’ responses taught me the biggest lesson of my life about friendship.
Lessons Learned:The attitudes of my friends hurt - a lot. What hurt even more was my mother’s attitude. I’ll admit that it took me years to learn how to handle the hurt. Here’s what I finally learned - If there was any fault or blame, it was NOT mine. I told people the truth about my health, and I never made up excuses. The “friends” who gave up on me weren’t really friends. Friends don’t do that. Those people were acquaintances, not friends.
My mother’s attitude also extended to some of my other family members. You know what? That’s not how true family acts either. As a result, I’d found people who are truly members of the “family of my heart.” They care. They do their best to always understand. They never, ever blame me. We love each other as family members should.
My Wishes for You:
- I wish for you family members and friends who will learn about migraine, accept your limitations without complaint, and keep loving you as you love them.
- I wish for you the clarity and strength to get through the hurt caused by those who won’t try to understand.
- I wish for you the clarity to truly know that there’s no shame or blame about our limitations as long as we’re doing our best.
- I wish for you the strength and self-love to let go and stay away from so-called friends or family members who won’t support you and make your life more difficult.
- I wish for you the friends, family members, and “family of the heart” whom you need and deserve.
More Suggested Info for Educating Others about Migraine:
Understanding the Anatomy of a Migraine (infographic)
_Reviewed by David Watson, MD. _
© Teri Robert, 2015. • Last updated October 13, 2015.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.