Sunday, September 30, 2007

But You Look Good.

Through Myspace, I found a great online resource called The Invisibile Disabilities Advocate. From their website:

Do You Live with Chronic Illness or Pain?

"Do your loved ones have a hard time understanding how your symptoms such as extreme fatigue, pain, dizziness and cognitive impairments can be debilitating?

The Invisible Disabilities Advocate strives to help friends and family better understand chronic illness and pain, as well as learn how to be a source of encouragement and support.

IDA offers articles, booklets, pamphlets, links, an online support group, a discount book store, t-shirts and more to help you and your loved ones forge the journey with limiting conditions."

And I just finished reading their booklet But You Look Good which I ordered online from them, and it was a very helpful, insightful and informative like the book "Beyond Casseroles" and the dvd "Life and Migraine."

"But You LOOK Good! is a 52 page booklet that gives those living with chronic illness and pain a voice about how they feel, what they need and how others can be an encouragement to them. It is a convenient, informative way to educate loved ones about what people living with ongoing illness and pain struggle with, fight for and need from their friends and family. It is easy to read, gives practical ideas on how loved ones can be supportive and is not too long for readers to lose interest!"

The problem I'm having though is getting the people in my life to read and watch these things with me, which I think would help them dealing with me and my chronic migraines, but everyone is very resistent. I tried to get a relative to watch "Life and Migraine" with me, to which she replied "Why on earth would you want to watch that? You are already living it."

And I tried to get a friend to read "But You Look Good" and she said "I already know how to deal with stuff like that. I don't need anyone telling me how to do things."

Any suggestions?

4 comments:

deborah said...

Have you tried hitting her in the head with it? Wait, sarcasm doesn't work, I know, I know.

For the invisible friends, unfortunately, it takes tfor them to have their own grief fall upon them before they see it.

Have you checked out the site, "But you don't look sick" that is on my sidebar? I'ts along the same lines, has a lot of funny stuff, good stuff. helfpull.

Good luck with Casper.

How to Cope with Pain said...

You're right - it's tough. I'd vote for not bothering with those who aren't interested, and just concentrating on those friends/family that are open to it.

Or, start with a short article, rather than a book. Here's one called "Surviving a Loved One's Chronic Pain: http://www.ppmjournal.com/Handout.pdf

Lastly, one "how does it feel" technique I use when I'm lecturing on pain is to have the audience stick their hands in ice cold water. Then I ask them how that would affect their mood, their concentration, etc., if that had that discomfort/pain all the time. Certainly it doesn't exactly replicate migraines, but it's the closest I've figured out to give people the "pain experience."

Migraineur said...

I guess it depends on how important these people are in your life. I'm blessed with a husband who takes an interest in virtually everything that's important to me, but on the rare occasions when he is resistant to something I want to share with him, I have good luck with "Because it's important to me, that's why."

Also, it does occur to me that people might be embarrassed to watch the movie with you in the room. Maybe they'd be more receptive to watching it by themselves some time.

Migraine Chick said...

That is a good idea about letting them watch it by themselves. I could say something casually like "Hey, do you want to watch this when you get a chance? It's pretty good."