Sad | Arthritis Information
Not many people know about my RA. I don't talk about it much because I find people say, "I have arthritis too". They don't understand RA is very different. I ride our golf cart around because it is impossible for me to walk any distance now. Last year I could work quite a distance. This week someone said I was lazy. I just agreed and laughed it off. While sitting with friends they began discussing how a man with RA looked. He is very, very crippled with his RA. The reality of this disease and people's reactions are making me sad.
I do attempt to explain RA as an auto-immune disease...if I think a particular person has a brain and might "get it".
How do you handle other's lack of knowledge? Ignore it or try to explain it? I agree. People don't understand this disease. I hear it all the time "I have arthritis too, in my big toe"! I gave up trying to explain that this is a much different form of arthritis. It is terrible to say but sometimes I wish these people could deal with RA for just one day! Then they wouldn't question it!Flamingo, it's so hard. In the beginning I was open and honest. When I was diagnosed, I tried to explain it to my co-workers and employers. At the time, AIDS was rampant and here I am, Ms. Auto-Immune, at a time when people are dropping dead left and right from Autoimmune Deficiency Syndrome. I tried to explain it is not contagious, but mostly I wanted people to know why I was shuffling instead of walking, etc. It was met with weird reactions. Some people stopped talking to me or looked at me strangely. One co-worker said "Well it's not like you're going to die from it, it just hurts" which stung me. A boss commented on my wearing sneakers with my suit and laughed at me. Some thought I was asking for sympathy. It was just big emotional soup and no one seemed to understand.
At a later job, I had a boss who was cool with it. Maybe it was the way I presented myself? We rolled together with the punches. But then at a later job, when I applied for leave to get surgery, I became a victim of workplace discrimination. Now I just try to hide it. If it's obvious I'm creaking and groaning I just stretch and say "Oye I'm gettin' old" and laugh a little. They all know I take more time off than the average person for doctor appointments but I still play my hand close to the vest.
I guess that was a long and rambling story .... bottom line is I just stopped trying to explain anything unless it is a person I trust and know as a friend. If I do mention it to someone who says "Oh I have arthritis in my knee I know what you're feeling" I just smile in sympathy and think to myself "You have no friggin' idea."
When my Mom was still alive and I was dealing with the new diagnosis, she told me something I'll never forget. "People really don't care." They don't. Everyone's wrapped up in their own issues.
{{HUGS}} I hope you feel better soon.
Green~Tara, like u I kept quiet about my RA at work most of the time - esp. as during some of the economic downturns the bosses wd hve liked an 'excuse' to do some more "down-sizing" of the workforce.
I'm grateful for this and other RA boards and for the fact I have a friend in the area that also has RA. She understands - most others, including family, do not.
Lorraine
I've been lucky in the fact that I've had a ton of support. One reason may be the fact that I have the strange complications. They see the joint issues, but I have the heart and lung issues as well. Also, the jaw replacement surgery was such a huge deal. They could see the physical changes. I've also had these recent hospitalizations(4X since Aug).
My friends have also been pretty supportive. Especially the ones that I've met thru my son's school/sports. They have been more than willing to pick him up and take him places.
There will always be people who don't understand. I was diagnosed as a teen, so I'm used to explaining the disease. I usually just tell them that anywhere there is "space" in you body, there is room for inflammation. That can be around a joint, or in my case-lung/heart lining and eyes. If people don't get it, I can't help that. I've managed to surround myself with those that do. These people are very important to me-don't know how my son and I would get by without them.
That's funny.
It's so true that everyone you talk to "has arthritis, too." I got into a heated argument in public with a young woman trying to tell me what herbs and alternatives to take to "cure" my arthritis. Afterall, her alternative remedy "cured" her arthritis. I remember after being told by a doctor that he was "pretty sure" that I have rheumatoid arthritis, the feeling of "no big deal". Afterall, two aleves and my arthritis is good. Our disease is so very misunderstood and equated to so many other diseases. I don't really argue with people anymore and I don't "down them out" constantly talking about my "downer" disease. And like Becca, I too have had such overwhelming support from those that are close to me. Wish you all a quick path to relief.
LEV
Flamingo,
I get the "I have arthritis too" comment a lot as well. I really try not to talk about it to anyone. Of course, if they see me in pain and ask, I dont lie.
It can be very painful sometimes when people don't understand and make some of the comments they do. When I was first diagnosed I was trying to tell my mom what was going on. She knew I was having trouble. In the middle of my explanation, she cut me off and told me that everyone had arthritis and I was just going to have to get over it. I really don't think she meant as bad as it sounded and was probably, in her own way, trying to give me good advice. Four years later, she just happened to meet another lady at work and noticed her toes were mangled. When my mom asked her about it, the lady told her she had RA and explained the disease to mom. When my mom called on the phone and started telling me how much she learned from this lady, it was very upsetting for me. Why didn't she want to hear it from me and try to understand what I was going through at that time?
I've learned it's not worth dwelling on. If someone asks, I try to explain. If they make negative comments, I try not to let it bother me. I'll admit when it's from family and close friends, it can be difficult to let it roll off the shoulder!
I only comment when asked. I always suggest they google it to get an accurate description, but in the absence of that, it feels like BBQ skewers going through my ankles, knees.......all the time. That seems to drive home the point.Thanks everyone - good advice on how to handle others who "don't get it". I agree with SnowOwl to just keep it with husband and good friends and family. I'll just ignore those who say, "I've got arthritis too". The disease needs a name change, and a public one at that to gain attention and educate. My GP doesn't even call it RA, he calls it "Rheumatoid Disease".
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