I found this great web site the other day, How to Understand Someone With Chronic Pain. This is one of the more accurate and insightful sites I’ve seen. The problem is, it only works if people read it.
I emailed this site to some specific people, I posted it on Twitter and on Facebook. I’ve told people about it. But I can’t force anyone to read it. I’ve seen other good sites and videos, but again, they only work if people read the pages and watch the videos.
For the people important to me, I think that if I email them the site and tell them that it’s important to me, they’ll read it. But then, these people already have a better understanding than most, since they’ve watched me deal with this for 20 years (or as long as they’ve known me.) How can I get their friends and acquaintances to read it?
Really it all comes back to the same old issue: ignorance in the general population. I’m tired of people suggesting that I’ll feel better if I get more exercise, or that I just need a good night’s sleep, or that I can’t really be doing that badly if I’m acting or looking so good. I know that at some point I have to ignore people and just not care, but that can be very difficult to do. I’ve learned to ignore strangers, but what about friends of friends? What about coworkers? It gets complicated. We all have our thresholds, and lately I’ve been hitting mine. A lot.
There’s no real point here, only that I hope everyone who reads this will email/post this site, or a similar one, to the people they know so that we can spread the education. There are millions of people with chronic illnesses; we can’t pretend otherwise. Let’s spread the word!
It would be so awesome if you’d click on one of the social media icons below to share this. Thanks!
Chronic Rants 
I completely understand how you feel and go through phases of reaching my threshold… a lot. 🙂 If I knew how to get around this I’d pass the info along, but as you wrote – you can provide information that would be helpful, but you can’t make them read it. It goes back to the leading a horse to water saying. There are times that I’d like to hold public meetings for people that are close to me so that I can update them en masse and pass along information that would benefit each of us. I’d even like to do this with my husband sometimes – he is always more than willing to offer advice and information but often doesn’t spend the time to educate himself on what’s really going on with me and how to better communicate with me. It’s frustrating, to say the least.
The best thing, and perhaps the only thing, also goes back to something you wrote… “Let’s spread the word!” Perhaps if we just keep talking, writing, and sharing info people will slowly but surely begin to listen. 🙂
Thanks for sharing!!
I agree, I wish we could tie people down in chairs and force them to watch/listen/understand. For now, I try to selectively post the more interesting and informative things I find on Facebook so that maybe a few people will read those and learn a bit. I’m hoping that if we educate a few people at a time, it will eventually add up to a cultural shift in understanding!