I'm still new at this, but I've found that some people get it, some don't, and others are compassionate enough to realize they don't get it. I try to understand, because I wouldn't know much about this if I didn't have it.
I keep details away from people I'm not close to, they are on a need to know basis. I am always open to questions though. I understand that this is not correct, but I relate it to rheumatoid arthritis. People understand it to the point of knowing it's bad. The average Joe won't know how different AS is, or the complicated workings of RA vs AS. Many people are related to or know of someone with RA and their struggles. I only put this out on a small scale, because I also don't want to be compared to other people's conditions. Just mentioning RA lets people know that it's not an old person one-joint thing, but a serious part of my life. Others do hear the word arthritis and blow if off as being like their grandma's though. That still pisses me off.
Also, don't whine of course, but do not underplay your pain. If people want to know, I'm modest, but I do convey that I am in pain everyday. If you're really trying to make your point, throw in the fact that you may have to do self injections--that normally makes them cringe a little. Include the word spine too... that makes it good.
Many people I know have been so great about it. I have great co-workers, family, friends, and classmates. The people who see me on a daily basis, or who have known me before the AS got bad have an understanding. They see the changes in my physical abilities, and know that I'm not just being a drama queen. They see the fatigue and the constant pill popping.
Also, I explain that everyone has a problem somehow. This is mine, and I'm dealing. If it's not AS it's something else.
It really has opened up some doors to bond with people. For instance, I met one woman who I had to speak to about my hardships because she is a supervisor/mentor for me. She has the typically thought of arthritis, but it is spread throughout her body. She has some real impairments because of it. When I see her we can talk about it and understand each other. We have compassion for each other and it's one more great connection and support.
Just realize that no one can understand at all unless they know. After you pass on the knowledge, it's their part to care. Like I said, it's a need to know thing. And if they don't get it, whatever, move on.
Aly
