Recently I was asked by a fellow parent at my son’s school, “What did you do to yourself?” He was addressing my limp. I don’t limp every day. It comes and goes depending on a myriad of variables. Sometimes it’s my feet, or my knee, or my ankle, there is no telling which body part is going to “act up” or when. I have been asked this question so many times you would think that I would have a standard response, but I don’t. Sometimes I am so focused on trying to get where I need to be in the least amount of pain that the question takes me by surprise.
Many times I have taken the time to explain that I have rheumatoid arthritis and frequently the response is “Oh my grandmother (aunt, mother, father, grandfather, fill in your choice of family member) has that.” And what they are usually referring to is Osteoarthritis which is not the same. In the beginning, when I was first diagnosed, I felt the need to clarify this to whomever was posing the question. This only served to frustrate me when most people just don’t get it and aren’t that interested in a medical discussion.
Sometime when I am in a hurry and really don’t feel like getting into an in depth discussion of my medical history, I will come back with a quick reply of “Oh that, I just twisted my ankle on the way out the door.” People usually nod in understanding and go about their business. I wonder afterward am I doing myself an disservice by dismissing the symptoms of this disease to avoid an uncomfortable discussion or the look of pity from some.
There have been times when I have been asked to volunteer for some event or another that I physically would not be able to handle. When I explain that I can’t because I have RA and standing all day (or whatever the task is) is not something I can physically do, I have been greeted with a look of doubt, as if to say, “Well, you look fine to me…”.
Unless I limp or try to give someone a thumbs up, my disease is invisible to the outside world. I don’t think of myself as disable, or courageous, or a warrior battling the arthritis demon. I try to take each day as it comes and handle as best I can the challenges that each day bring just like everyone else with this disease.
So the question remains; how do you handle the stares, the looks of concern, or just the questions? How do you deal with people who don’t understand? Is there one easy answer? I would love to hear how you respond to these issues.
Tags: medical, osteoarthritis, pain, Questions, RA, Rheumatoid Arthritis RA, symptoms
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I don’t think there is an easy answer at all. I get that “but you look so healthy” all the time when I talk to people about my lupus and fibromyalgia. It’s both a blessing and a curse I think. I’m glad that I dont’ look as bad as I feel, but at the same doubt I know that because of that, and all the things I do to mask it, that people don’t understand and in a way doubt the seriousness of it too. I haven’t come up with a good way of dealing with it, but I totally understand where you come from. For instances where you’re in and out and get questions like that, I don’t know that I’d dive into details either and would go for something like the ankle story. I think I even do that some now, times when my knee’s hurting or I’m rubbing the finger joints…easier to just say they ache or blame osteoarthritis than get into details…
I am 43, and have 3 kids. I know how you feel. I look OK until people see the state of my hands. So sometimes I get no understanding, othertimes too much attention to my problems. I often don’t want to go into it either, it’s wearisome. I’m getting better, I try to be quick – say it’s immune related, started after pregnancy, yes it’s an absolute pain, but there are plenty of people worse off. Nowadays I leaning towards the feeling that if people don’t get it, life’s too short to worry about it. Best of luck. My blog is http://www.joanne-helpinghands.blogspot.com
Mind if I add you to my blog list?
Not at all.
Mine was juvenile onset (started when I was about 10 and I am 34 now) and I STILL don’t have a great answer. Since I naturally am an “explainer” I usually just end up frustrated–most people DO NOT get the difference between RA and other forms of arthritis and those that DO are surprised because I have mine pretty well under control and the people they know who have it are much more extreme. So my answer now is usually more of a “I have RA, which is very different from Osteo, have had it a log time, am having a flare-up and usually am doing much better, thank you for your concern.” One of the reasons I bother explaining even that much is that my eldest also has JRA and I want to educate people so she doesn’t have to. Our families STILL don’t get that unlike Osteo you don’t “just move around until you stop being stiff”. I do however keep it simple.
I get the same stupid looks. Some days I feel pretty good, others I can barely function. Sometimes I am so tired I can’t think straight because the pain kept me awake all night. I always get these stupid looks like, “well you don’t look disabled” OR you can’t be in that much pain, or how about “my aunt gertrude had arthritis an she just kept pushing on” I don’t know how to respond, and if I am having a particulary difficult day I may snap. I realize people are just rude. My mom taught me not to ask what is wrong with someone, maybe more people should teach their kids the same. I don’t have to answer, My favorite line is “Why would you want to know”
That isn’t a bad reply. It really isn’t anyones business. I just think most people don’t realize how serious this disease is. Or even what it is for that matter.