Saturday, April 19, 2008

coming out of the (migraine) closet: a borrowed subject

Fellow migraineur and blogger, Megan Oltman, wrote an excellent post yesterday (as always) about coming out of the migraine closet. She makes the analogy of living publicly with this disease, of coming out with it like coming out with sexual orientation, and the need for education as a path to acceptance. She's right - the only way we migraineurs will ever get the compassion we deserve is through understanding, which will only come after education. And it's up to us.

Megan is doing an outstanding job, I think, of living out in the open with migraine disease. She doesn't hide her migraines, doesn't apologize for them, and does her best to ask for reasonable accommodations as she needs them. She educates those around her without preaching. I'm sure like the rest of us she still encounters those who just don't "get it", but that's to be expected. I give her a lot of credit for living her disease so publicly, because I'm not there yet.

I'm still in the migraine closet, so to speak.

For the most part, I don't discuss my disease. My boss and team at work know that I get migraines, but that's about the extent of it. I did print out some information about migraines from MMC and AHDA - including "What is a Migraine?", Understanding Migraineurs letter and the AHDA flier - to pin up outside my cubicle. Within the same week, I faced some incredibly insensitive comments from one of my coworkers, whom I promptly named "Mr Insensitive".

In college, I lost a lot of friends because of my migraines. At that time, I didn't even understand what I was going through, so I couldn't educate them. I thought I was just having sinus headaches. Along with the migraines came a bout with depression, and the friends I had were unwilling/unable to be a good support system at the time. Fair weather friends indeed.

I don't mean to make this into a sob story, but being burned in the past has made it difficult for me to be upfront with others in my life about the severity of my migraines, and I know I'm not alone in this. It's a subject we discuss every day on the MMC boards. Who do we tell? How do we tell them? How do we deal with those in our lives who don't get it? There is no one size fits all answer, that's for sure.

I've been working to educate those in my life who are close to me. DBF is reading Teri Robert's excellent book, Living Well With Migraine Disease and Headaches. I feed tidbits of information and articles to my mom. I sent the link to this blog to my sister. (Both my mom and sister, like most of the women on my mother's side of the family, are migraineurs.) Cliche though it may be, knowledge is indeed power.

So I may not be living openly and comfortably with my disease, but I'm getting there. One foot is poking out of the closet, at least.


Thanks to Megs for a great topic!


nutmegan said...

Thanks back to you, MJ. I'd love to get a dialog going all over the migraine-web about what coming out means to us and for us. I guess in some ways I have it easier than others because I'm self-employed, and have built my life around accommodating my illness. I still encounter friends who may feel slighted, family members who feel I'm not pulling my weight. And I do struggle with how much to tell who when. I worry some about whether I sound like I'm whining? But I mostly just jump in and talk, figure if it comes out wrong I can clean it up later.

My migraineur and other chronically ill clients are very understanding when I have to reschedule, but some business clients are not. Maybe that's why my business is shifting more to working with chronically ill people.

Anyway I think it's a great conversation for us all to be in. The Americans with Disabilities Act got passed because disabled people spoke up - I try to keep that example in front of me.

- Megan

Eileen said...

MJ -
Great post girl! I have always been pretty open about my migraines, but lately I've decided to just be like - "listen, my head is freakin killing me right now, so what you are asking me to do, is not going to happen".

I've decided to stop minimizing the pain. If I hurt, I'm going to tell you if you ask!

Looks like you are on your way! No longer will we stay in the closest with our pain!!!!

Love and hugs!!