bethf wrote:I wish some of them (physicians) had time to read some of this forum. Or just time to listen.
A few years ago I created a letter to send to local physicians in my area that might run across RLS (it's posted in an old, old thread somewhere). I encouraged them to come here and read about patients' experiences with RLS for them to get a better perspective of what our lives are like.
Since Chicago is huge, I just sent it to a small cross-section of doctors I found that said they were interested in treating RLS. To my knowledge, none of them took me up on the offer
I still believe that we can have a huge role to play in outreach. First, every body who reads this forum should be a member of the RLS Foundation. If you can't afford a full membership (and believe me, I know how tight money can be), skip something that you normally indulge in, save your change, or do something to give them even $5 or $10.
Second, every physician we meet is a potential convert. It's all in how we manage it. I'm not saying it's easy because our first agenda is getting our own needs met and when we're tired, depressed, etc, we're often not at our best at advocating for ourselves, let along an RLS-awareness agenda. But, I know that I'm also driven by making sure the next person doesn't go through what I went (and continue to go) through. Sharing articles with our doctors, making them a recipient of an RLS membership, buying used copies of the most important RLS books regarding treatment and donating them to our doctors, buying RLS Foundation pamphlets and sending them to doctor's offices to put in the waiting room, or donating the RLS Foundation Newsletter are all things we can do.
Third, we can find others locally and start a support group. I'm surprised at how few we have. As a support group leader, we have the ability to form partnerships with local physicians, helping educate them and then having them work with the people in the support group. Win win all around.
Fourth, telling others - coworkers, bosses, friends, anyone - about what it's like for us, how it affects us. Out of need this last year, I've had to come out of the closet with many colleagues and even some close clients. It's been very hard but it's been worth it. I had (and have) to walk a fine line; I can't be seen as someone who can't do her job well, yet I need them to know that I have limitations that anyone with a chronic health issue might have. It's been easiest to do with people related to my volunteer capacities and hardest with colleagues and clients. Interestingly, the new consulting firm I've started consists of five people, all with some under-the-radar disability or chronic health issue that prevents us from working as other people do. It's allowed us to find a way to work together to be successful and still take care of ourselves.
I didn't mean to go on this way...and I wasn't trying to hijack the thread. My apologies...