I've been asking e-course subscribers* what they find to be the biggest challenge in managing their Migraines. Many of you have responded. While I've written individually to everyone who responded, we all have so much in common that I wanted to share some of what I've gathered from your responses. This is kind of Megan's Dear Abby for Migraineurs.
We all know that we are challenged in many ways by Migraine disease, but the majority of subscribers included something along the lines of "helping others understand." How do we help others, the non-migraineurs who are important in our lives, to understand our disease, how it effects us, what we can and can't do about it, and how it will effect them?
In reading all your responses, I see two issues in helping people understand.
The first is coping with those who judge us. "Oh it's just a headache she's being a baby." "Oh so you have another of your little headaches?" "Why do you always have a Migraine when I need you to do something?"
People have all kinds of reasons for judging. Sometimes they want to feel superior. They may want to distance themselves from you, your problems, your pain. It's almost a superstition at times; if they don't sympathize, if they don't believe in your pain, they can pretend it has nothing to do with them, that nothing like this can ever happen to them. Some disability advocates refer to the non-disabled as "TABs" - standing for Temporarily Able-Bodied. A potent reminder that disease and disability can happen to any one of us.
What can we do with those trying to feel superior? We can think of nasty responses to put them in their place, and that can be a fun exercise when we're angry. The only thing I think is really effective is to speak our truth - tell the truth about what it's like for us. Some of those people will hear. Some of it will sink in. This is more about Coming Out of the Migraine Closet. And if these people are not important to us, how much do we really need to do? We can choose how far, and when, we want to be advocates, and we can recognize that not everyone will understand us, not everyone will be our best friend. The job of advocacy takes a long time, and while I believe in educating people, it's okay not to face down every single person every single time.
When important people judge us, the people that matter in our lives, I believe they do it out of pain. There is the pain of what they lose to Migraine disease. Our companionship, having fun with us, our help, our ideas, our input. Our work and productivity. There is the pain of seeing us in pain. Of wanting to help. Particularly in the case of parents and life partners, there is the pain of wanting to be able to fix it, make it all better, make it go away. The pain of their powerlessness in the face of this disease. When we can't face pain, or understand it. we look for someone or something to blame. "Why can't you take better care of yourself?" "It's all in your head." "You have to learn not to stress out."
The answer is in communication. If people care about us, it's worth doing whatever it takes to help them understand. To sit down, at a time when no one is upset, and tell them what it's like for us. Give them information they may not have about this disease. Teri Robert has a great resource, Understanding Migraine Disease and Migraineurs, which is a letter you can give to those who don't understand.
But this brings us to the second issue, which I suspect is actually a bigger issue than what the others think. First, before we can ask them to understand, we have to understand ourselves. I think this may be the biggest ongoing challenge. We have to understand, and accept, that we have a disease. We didn't choose it. We didn't cause it. We may be scared, confused, upset, frustrated, worn down and in pain. But we are not lazy, we are not malingering and we are not making it up.
Even more of you wrote about your worries about effecting others than about actual judgment from others. "Feeling like I'm a burden on my family." "This disease affects everybody around me and it's not fair. Neither for me nor for the others." "Having to stay in bed and my hubby having to take over." "I want my clients to be able to depend on me but sometimes I cannot be there and that really bothers me."
We want to be useful, to be helping and participating with those we care about. The first thing we have to do is to accept that we have a disease that will interrupt our lives, take us out of the action, make us rely on others. Inside of acceptance, we can begin to see how we can help, what we can do. Inside of understanding, we have options.
*The Six Keys to Manage your Migraines and Take Back your Life - sign up for this free e-course in the upper left corner of this page.
Writing pen image courtesy of Toshiyuki IMAI; pointing finger image courtesy of Lisamarie Babik.
We’ve moved! For more on managing life with migraine please visit us at www.freemybrain.com
I just wanted to say thanks so much for your e-course, it has really helped me reflect on how I manage my life with migraines. And also thanks for a previous post of yours about preparing for a doctors visit, I had an appointment with a new nuerologist yesterday and had all my stuff typed up and ready to go. He did call me obsessive compulsive, but also really appreciated my efforts, and it was a great visit. I was so pleasantly surprised with the new doctor, he answered all of my questions and explained everything to me. Thanks again!
Posted by: sharon | July 22, 2008 at 03:04 PM
Megan,
I think we may have passed paths on wego. I just wanted to tell you, not only do I agree with this but it took me a while to say 'I HAVE A DISEASE'
My family also hated the idea, they did not understand my meds even though my husband is an M.d. and I am a shrink (PH.D). I hurt me very much that they did not understand, I finally had to learn they will not be able to because
1)they don't want anything to be wrong with me
2)it is the, it is just a bad migraine...they have no idea that tia's come with that and your brain DOES LOOK AND REACT DIFFERENT AFTER TIME. I have since learned not to bring it up with them.
I know they love me more than words can tell....
boy I could go on about this forever....
bottom line
it is hard to accept things you do not want to!
Liz
Posted by: Lisa Bratcher Carley | July 24, 2008 at 03:34 PM
As of this month's issue of Cephalalgia, there is evidence suggestive that migraine with and without aura have similar pathophysiology. PET studies were done in migraine without aura, and posterior cerebral hypoperfusion was found, similar to that found in migraine with aura. Some feel that hypoperfusion is a consequence of cortical spreading depression.
reference for the Geeky: Denuelle et al, Cephalalgia, 2008; 28:856-862
Posted by: Christina P | August 05, 2008 at 01:39 AM
A hearing disability and attention deficit seem to have a similar effect to the other people in my lives. Often the people respond as if they are superior which truely destroys the ability of respectful and healthy communication. To even attempt to share that the ones that are important in my life are acting superior, treating me as if I am incapable, excluding me from conversations,
not showing a desire to "be" with me....this openness of discontent on my part would only lead to anger, denial and accusations that I am not appreciating all their sacrifices and that I am just feeling insecure. If I lay it out like you have mentioned above I might have a better chance in respectful conversation and living in harmomy with someone else. I'll give it a try but I'm not very hopeful.
Posted by: Cathy | December 30, 2008 at 09:32 PM