Appearance
I always run into situations where I meet a new person and we get into the fact I have arthritis…and I always get the same line "But you can't tell by looking at you…you look fine." I know they say it because most of the time it is true. Unless you look closely at my swollen joints or if I happen to have really sore legs that day…I 'look' fine. But why do people feel the need to say that I don't look like I have arthritis? I didn't know there was a specific way to look. Also, I get comments like 'but you are so young'…and when I tell them I was diagnosed at the age of 2 they usually say they didn't even know that kids could have RA.
Does anyone else get these kinds of comments…do you say anything in return?
-L
unless you are bent over and disfigured or using a cane or wheelchair, arthritis is a hidden disability.
ReplyDeletemost folks associate arthritis with older people, because that's the only kind of arthritis they hear about in the media. There is little public awareness of the wide variety of arthritic conditions and who is affected by them.
I rarely discuss my arthritis with anyone outside family and medical personnel, even when I was in constant pain. I guess I'm old and crusty and don't care about what other people think, lol.
Hi, I was diagnosed with RA at age 16. I'm now 37. There isn't one part of my body that hasn't been affected by RA. I've had both hips replaced and one knee. Now I have to have another hip replacement. I've been on many different meds and they seem to work for a year and then quit. Prednisone is the only thing that seems to help.
ReplyDeleteI envy you for being able to have kids. That's been my dream since I was little. Now I've been told that I can't have kids because of the meds.
I get people telling me all the time that I'm too young to have RA. Wouldn't that be nice! I just tell them RA has no age restrictions. Sometimes they want to know more, so I end up kind of educating them about it, they ask so many questions. lol
I have a parking permit and I really hate it when people stare at me like I'm doing something wrong when I park there, because I don't look like there is anything wrong with me.
It's like you said before I just take things day by day and deal with it the best way I know how.
Thank you so much for creating this blog. I feel so alone sometimes because people just don't understand. I have even lost all of my friends because they just don't understand that sometimes I just can't do things.
People can be cruel about things they don't understand. It's for that reason that I tend to speak openly and frankly about my disease. I myself had no idea what it was when I was diagnosed with it...and my Grandmother had it! So, if I can help someone understand what it is, then I will. I have no parking permit and by the time I park and get to the door, I'm wiped out and hobbling. This is when I am stunned by people who come up to me and ask if I'm alright. I've always been quite independent and hate to ask for help from anyone. And let's face it, sometimes we have to have help. I've come to realize that being afflicted with any disease that makes you stand out, makes some people very uncomfortable. And who better to teach those who have their health about those who do not, then us.
ReplyDeleteI hear you! I am so tired of people saying the same thing. or come back with oh yeah I have achy joints. I have had it for 12 years. Have been hospitalized numerous times once because of a severe reaction to Remecade after I had been taking it for over two years. It cause permanent scaring on my lungs. That's the stuff people don't see or understand. It's autoimmune and I thing the word arthritis throws everyone off. Great blog you started. It's nice to have other people to talk to.
ReplyDeleteMy BF of 2 yrs finally asked me what RA actually is, he had no idea of the extent of what we go thru every single day. I always get the "but you're so young", or "why doesn't your doctor try something else?" I too am grateful that you have started this, it really does help to know that I'm not just a wimp when I have to take a break or just cry with the pain. Thank-you!
ReplyDeleteYes I get those comments all the time!
ReplyDeleteI work in a doctors surgery and when winter hits and alot of the patients with arthritis start saying they're in pain etc etc they looked baffled when I sympathise and agree with them, so then I have to explain I have RA and then all of a sudden they feel sorry for me, and I get all the comments then, and they tend to feel better about themselves then, haha glad I could help!!!!
Emma
Exactly what I get too! I'm 40, but look much younger. I was also diagnosed at 2 with polyarticular JA. Now, I have OA because of the residual effects. I have had numerous surgeries and recently had my left ankle replaced in March. I am having a Lumbar Fusion on Thursday and hope to have my right ankle done shortly thereafter. I also have two boys, ages 7 and 3. Every day has been a struggle lately, both physically and emotionally!
ReplyDeleteI get those comments all the time... and my response to people is "Yes, I know... and that's my double-edged sword... Because it also makes it hard to get people to understand that yes, I am sick." Usually saying that, people tend to understand. They always mean it in a good way, like "be glad you're not disfigured" but they seem to not realize that, well, some day I could be, might be, probably will be. And not only that, but many days I need a lot of assistance with things that seem so menial to most people... opening a jar, picking up a penny I dropped, using a pen or pencil......... If I don't look sick, asking for help? -sigh- But I can't expect everyone to understand, and I try to take what they mean as a compliment as gently as possible.
ReplyDeleteWow Jen, my problems seem so miniscule to yours. You must be exhausted. I hope your surgery is a success!!
ReplyDeleteI have had RA for 4 yrs and I am 39 and I hear things like this all the time. My favorite is "but you're too young" yes, everyone is too young no one should have it! but I just explain that its hereditary and that my father was diagnosed at the same age. I know there if far more to it all than that but that usually appeases people. I'm feeling kind of whiny today...so before I start babbling I will say thanks for this blog!
ReplyDeleteMichelle
in Central NY
I'm 24 and was diagnosed with RA at 19. I've come across so many people that underestimate the destructive power of the disease, that I've kind of given up on trying to explain. I can only talk about the bad days with close family. It's hard for people to understand something that is sometimes invisible. Pain is isolating. So, when people ask me why I'm limping, I always lie and say, "I'm okay. Just a bad hip." It works better than when I tell the truth.
ReplyDeleteI'm 35 and was diagnosed with RA 3 years ago, although I had symptoms for several years prior to diagnosis. I try not to talk about my disease or the pain. But when I do mention it, I agree with the sentiment above, I find it frustrating that people say "you don't look sick" or "I know, I have arthritis too" referring to osteoarthritis in a single joint. They have not idea how it feels to wake up each morning feeling like you have been hit by a truck. When I describe the feeling to others, I liken it to the achy feeling that you get when you have the flu, it’s the closest I can come to something they might have experienced. Even that however, does not describe those times when there is shooting pain in a joint that is severely inflamed.
ReplyDeleteIt’s also hard when the people close to me, who are good at recognizing a red, swollen joint, assume that if they can’t see anything, I must be feeling good. I never feel good, and just try to get through by ignoring the pain as best I can.
I'm glad to hear that others feel the same way.
I'm 32 and have had RA since I was 18. I have had both knees and a shoulder replaced. I can relate to what everyone is saying. Jessica, I know what you mean about the limping because my ankle is really bad and I limp too. It is so much easier to tell people that I have a bad ankle than go into the long conversation about RA and deal with the questions and pity looks. I luckly have a husband that understands me and what I deal with but it was an uphill battle at first. My family and friends try to be helpfull because they saw me at my worst, just before I had my knees replaced I could barely walk and when I did it was only very short distances, and now they sometimes try to be too helpful....which I don't complain because it is better than nothing. I would like to have kids but at this point it just doesn't seem possible between the meds and the damaged joints I have that limit what I can do. Even though I am sad that you all have to deal wirh this too it is nice to know that I am not alone. Thanks for creating this blog!
ReplyDeleteoh yes - 'your too young!' and 'oh I have arthritis too' eck (I am 31)....its annoying....I am a member of the arthritis foundation in my local area and all of the members are like 75 years and over....and even THEY look at me like I don't belong there! Since they suffer from Osteo I do have a little trick up my sleeve - ask them where they have it and when they answer I tell them the looong list of where I have it! It does the trick...I was even asked if I was coming to pick up my mother...sigh...its so important to me to try and find people who are going through the same challenges...I am glad for this blog.....
ReplyDelete