Wednesday, August 27, 2008

Seems like everyone has advice....

Yes, I have an invisible illness. You can't see it, and if I didn't tell you I had it, you would probably never know.

Even with Migraine Disease, I have managed to still work and have a somewhat normal lifestyle. This is not to say that I don't end up in pain at work, or have to cancel plans last minute, but I still consider myself one of the lucky ones. Migraines have not totally disabled me.

For the times people do see me in pain, I get a lot of "have you tried this?" comments thrown my way. Maybe it's because the average person does not really understand that Migraine is "not just a bad headache".

Migraine is a genetic neurological disease affecting close to 36 million Americans. Migraine affects more people the Diabetes, and is the 12th most disabling disorder in the US.

You would think with those numbers, more people would know what it is. I guess because with Diabetes, people know it's watching your diet or insulin that is used to control it.

It just seems odd to me that there are so many people out there with misconceptions or no knowledge about Migraine at all! That's probably part of why it's under diagnosed and an individual waits till their attacks are very chronic before getting treatment.

The "can't they do anything for you" comments get old. I get tired of answering them. I am doing everything I can, trust me. If you felt anything like I feel on a daily basis, you would be on the computer researching Migraine, talking to people, looking for the best specialist in the world, no matter what the cost.

Granted, I am happy when I see a news report on Migraine make the evening news, but still, the information given to the general public is information Migraineurs have had for over two years. The news acts like it's a new fangled test, drug or device, when it's been on the market for years!

I wish for the day when invisible illnesses like Migraine, Multiple Sclerosis, Fibromyalga, and many others are hitting the main stream publications and radio waves.

So many of us suffer alone, trapped inside our pain. But having support groups out there make life a little easier. Knowing that "oh she feels that way too!" is comforting. Sharing pain is a powerful bond, yet I don't wish it on anyone.

There are a lot of great organisations and support out there if you suffer from Migraine:

My Migraine Connection

The Alliance for Headache Disorders Advocacy


The Migraine Research Foundation

The National Headache Foundation

Oh, and I can't pass by this little tid bit either.

If you have someone that is a "can't they help you" person or just doesn't understand, give them a copy of Teri Robert's Friends and Family Letter and help educate them!

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

I just wish for those who don't understand to maybe think before they make comments.


Mary Kay said...

Things are changing but slowly..I think the advent of the Internet is helping to speed things along a bit..

Fifteen years ago I and others like me were told just take a pill. "It's only a headache". As more information gets out there to the newer generations who are more internet savvy, perhaps the perceptions will change.

merkabachild said...

I, too, am sick of hearing the comments. I work in the IT field with mostly men and missing a day with a migraine is like staying home with cramps in their eyes. I often think "if only they knew" but then again, I wouldn't wish a migraine on anyone. I think I'll print the letter and leave it on some desks. Thanks and be well.

rain gem said...

You'd be surprised how small a number of people actually look for information. Migraine is no exception. It used to rattle my cage too. Then, I realized - we are fishing in a small pond, can't be helped. Those who want to find the info, will find it. Those who don't, well, don't. It's evolutionary forces at work here. That's why I keep putting up a piece up every day - for those who want to find it. And for me as well. 29 days with no proper migraine; up from an attack every 2-3 days 6 month ago. And without any meds :P . Knowledge is power, what can I say.

Eileen said...

I have Teri's letter up in my cubicle. I don't know if anyone actually reads it, but I feel better knowing it's there.

Rain, glad to hear you've gone a month Migraine free!! That rocks girl!

rain gem said...

Huh, ever heard of "pain withdrawal symptom"? Probably not - no one ever talks about it. It's like getting off drugs, only weirder. It's better now but was a real problem when I first managed to go 10 days without a migraine.

Anywho, sometimes I feel we'd be better off blogging about iPods or something. At least there would be an audience. But then, who's going to do this shtick - something that only we can do? :P