I’ve been thinking a lot about what we most often hear people with migraines and headaches say about living with them so we can work on suggestions and support. I’ve asked other people for input and made a list of things people say. At the top of that list is, “People who don’t have migraines can’t understand”.
Let’s think about that statement for a minute - “_People who don’t have migraines can’t understand _.” I have to say that I find that statement to be both inaccurate and unfair.
Let’s take my husband as an example. Thirty years ago, no, John didn’t understand migraines, not at all. He, as so many other people, thought migraines were, “just headaches.” Then, we met, and seeing me with a migraine was a true eye-opening experience for him. From the very first of my migraines that he witnessed, he realized that:
- It was far more than a headache.
- That I’d (quite bluntly) end up sitting on the toilet with diarrhea while I threw up into the bathroom trash can.
- That light, sound, and movement were actually painful to me.
- That when a migraine hits, I need my prescription medications, and I need them quickly.
- That when I have a bad migraine, I can be totally incapacitated.
When I was hit with the second migraine I had around him, he asked where my medications were so he could get them for me, closed the blinds in the bedroom, turned off the television, and put a stainless steel bowl on the bed so I didn’t have to run to the bathroom to vomit.
That was in the days before I’d started to learn about migraine, that it’s a disease, that migraine attacks have triggers, etc. As I read to learn, John read what I read. He may not know exactly what a migraine feels like, but he definitely understands what they do to me and other people. He always knows where my medications are and what to do for me. When the crippling nausea hits hard and he hears the sound of dry heaves, I don’t even have to ask. He prepares a Phenergan injection and has it ready to inject it for me. He doesn’t try to talk to me, but leaves me alone, peeking into the room periodically to see if he can do anything for me.
I’ll admit that a husband has more motivation to understand than many other people in our lives. I’ll also admit that not everyone is going to understand. Some people aren’t close enough to us to really care, and others just don’t have an empathic personality that lends itself to understanding the issues other people have. Overall, however, I think more people are capable of understanding than not. Perhaps, in our misery, we tend to expect people to automatically understand when, in fact, that’s unlikely to happen without them learning a bit about migraines. Very often, the key to understanding something is education.
What I suggest is that when we encounter people who don’t understand, rather than automatically going to, “People who don’t have migraines can’t understand,” we work to change that thought to, “People who haven’t been taught about migraines have trouble understanding,” and try to educate them a bit. I have a letter that I wrote with some of the basics about migraine. There are always a few copies with me so I can give them to people, and I have it in electronic format so I can email it too. You can develop your own, or your very welcome to _download mine _. Feel free to print it to give to people, or email them the PDF file.
One last thought We all live with more than enough of the _stigma _ associated with migraine. Education is a key to stopping that too. It occurs to me that we might create or at least perpetuate stigma if rather than trying to educate people, we assume that people who don’t have migraines can’t understand. That’s something to think about.
_What do YOU think? Please leave a comment below, and share your thoughts! _
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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+.