Hi. I'm new here, but I've been lurking for a while. I was diagnosed in June of this year with RA. I've had a hard time on my meds and I can't walk well, but I can handle that.
However, what I can't handle is when I am at a store, and some stranger asks me what's wrong with me, why am I moving so slow and limping. I answer buy saying that I have RA. Then they say, oh yeah, I have RA in my hands. That really burns me up. Most people think RA is just some sort of arthritis and it really annoys me when they look down at me like why can't I handle a little arthritis.
Anyway, I just wanted to vent a little and join the forum.
[QUOTE=suzyhmkr]
Hi. I'm new here, but I've been lurking for a while. I was diagnosed in June of this year with RA. I've had a hard time on my meds and I can't walk well, but I can handle that.
However, what I can't handle is when I am at a store, and some stranger asks me what's wrong with me, why am I moving so slow and limping. I answer buy saying that I have RA. Then they say, oh yeah, I have RA in my hands. That really burns me up. Most people think RA is just some sort of arthritis and it really annoys me when they look down at me like why can't I handle a little arthritis.
Anyway, I just wanted to vent a little and join the forum.
[/QUOTE]
Sorry for the miscommunication
Hi and welcome to the boardI've never had strangers ask why I'm limping or walking slowly. I have though, while waiting to have my bloodwoork done, had strangers ask why I'm there. I tell them that I take medication for RA that requires my blood to be monitored. Usually it's an elderly person and they always say they also have "arthritis" in their hands or somewhere else. I don't mind. I know they're just wanting to talk and I also know that what they're talking about probably isn't what I have, but I just leave it at that. I just nod and let them tell me all about it
Kelly
Many people equate RA with OA. Maybe you could just leave out the "A" part and tell them that you have a severe autoimmune disorder that makes it hard to walk. Or...a connective tissue disorder. Both are true, but might help you to let others know that you don't "just have arthritis". I've gotten to the point where I don't care much what others (particularly strangers) think. I don't mean that in a bad way, it's just not that important how others I don't know view me. I think that a lot of people just want to relate. I'm like kelstev, I'm rather chatty and don't mind talking to people, so I am frequently in conversation with others at the lab, doctor's office, etc. I just go along with their story as well, knowing they don't have the same type of arthritis, but also knowing they likely have tons of other aches and pains I'll never be able to relate to. I was trying on shoes recently and saw this darling young girl in her 20's trying on shoes. Her feet were turned and twisted and she was the epitome of cool, trying on the cutest, coolest shoes in the store, like she didn't have a care in the world concerning her feet. We started talking about the shoes and giving girl advice on what looked good, etc. She encouraged me to try on a pair of heels, and I told her that I have RA and some days I can't walk in flats, much less heels. She then opened up about herself and we ended up having a great hour or so in the shoe store trying on funky shoes and critiquing each others. I don't think that people deliberately try to downplay your illness, but really don't know what RA is, because they've had no reason to know. I don't tend to look at strangers who ask questions "nosy", I tend to think they are just interested in you. If they don't know anything about RA, I don't think them unintelligent, just fortunate not to have need for hte knowledge. There are so many invisible illnesses. We never know what others are going through as well. Everyone seems to have some sort of cross to bear, whether it is medical, financial, marital, etc. Welcome to the forum! We are happy to have you here! Love, JuliahHi Suzy!
Glad you have joined the forum. You should pop into the chat thread sometime! I look forward to getting to know you.
Strangers can be rude and just plain stupid sometimes. One of our old members used to ask them when they said they have arthritis too if they have to take the strong chemo therapy type drugs for theirs too? I do know people with osteoarthritis that is quite disabling as well. I work with a guy who just had a hip replaced due to osteoarthritis. He's a large guy, and his hip just wore out. Before surgery he could barely walk... even using a cane. It hurt him so bad that he had tears in his eyes some days. It's been 4 months since his surgery, and he's been going through physical therapy which is also painful.
Welcome, I understand what you mean it is hard to take when you can hardly walk and every joint is inflamed and hurting in a way you didn't even know existed and somebody is talking to you and they moving like we used to and they are comparing, but no matter whether your's or mine is more sevre or maybe it is not. Julia said it best there isn't a one of us that don't have our own crosses to bare we are all in the same boat so it doesn't bother me personally as much as it use to i just smile and hobble down the isle. And speaking of store I remember i use to zip up and down those isles and now good god those isles seem like their a quarter of a mile long.
Hillhoney thanks for the laugh telling us what your friend use to say i bet that did shut them up.
I've had so many people shake their heads and say, HUmmmmm, 'you don't look sick'!! Well, they should follow me around for a while and see how hard it is to open doors, tie my shoes, do the dishes, start the washer.....(I bought the coolest can opener that is a 'one touch' thing that you put on your cans to open, it cuts under the rim. No more fighting with the can opener when I need a tuna sandwich. I want to get it myself!
The worst for me was when my DIL suggested if I'd just eat the right foods I'd be fine! Is she kidding! I'm taking 00 a month worth of powerful drugs, (remicade), and methotrexate that makes my hair fall out...and Prednisone, which makes my face fat!! doesn't she think I'd be 'eating something special' if my well educated, and thoughtful doctor believed that would help me?????
I hope you can come up with a quick answer the next time and tell people, 'hey, I'd rather be running around this supermarket!! I've even thought those 'little electric scooters' would be helpful.
But I do understand getting annoyed sometimes. It helps to remember that these are in most cases total strangers and you shouldn't give them any emotional power over you. And frankly I also remember that I was equally clueless before I was diagnosed as I am sure many of us were. I can't get annoyed at someone being clueless about RA when I was myself at one time
Hi and welcome. I am glad you asked such a question or any question. That what seems to get the ball rolling for us to get to know you and vice versa.
Let's face it in our society today we do not have time to find out about our neighbors like my grandmother did and certainly my great grandmother. Shoot, you are lucky to have your children stay in the same area after they graduate. With society so disconnected some of the more mature folks just want someone to relate too, and for the most part just want someone to care about them too. Human nature is that we should be caring for one another, but we don't.
If I did not have this disease(and let me tell you...at least people have heard of RA...most have not heard of psoriatic arthritis, nor have they seen an outbreak of psoriasis, in fact my message therapist gloved up, 'cause she thought she could "catch" it) I would not even WANT to know about this disease! I do not get angry with those that ask or try to relate. It is what it is...they just want to talk just like we do until the wee hours of the morning, because of pain...prednisone or both. I always try to ask myself what can I give this person, 'cause if it were my grandma...most likely she would have this too.
I guess I am trying to say that I always try to put myself in others shoes...we all have crosses...some are larger and heavier than others. If I think they are just pulling my chain I wish them a good day and toddle on. They can't impact whether I have this disease and I cannot give them friendship or a moment to talk or relate if I am angry at the disease or them.
gosh I'm long winded...see what happens when a teacher does not have a job.
When I was 19, the worst pain in my life to that point was when I had broken my arm as a little girl. The next year, when I was 20, I had kidney stones. That made the broken arm seem like a mosquito bite in comparison. Honestly, if someone would have tried to describe the kidney stone pain to me before I had actually had it, it would have been incomprehensible. The kidney stone pain was my absolute worst in my life until I was 30 and having an emergency C-section with an epidural that didn't completely take, and the discovery that morphine doesn't really work for me. That made the kidney stones seem like a little stomach bug. Fast forward to last year... I got a scratched cornea. never in my life have I had something so incredibly painful. Not even a shot of Dialaudid would take care of that pain.I have an answer for "but you dont LOOK sick (or like you Need the handicapped spot)"
I say... "yep and you dont look stupid.."
Kelly, You are right about people not understanding about the severe pain most of us have. It is all relative. That's why I think the pain chart is so weird. You know, the 0-10 that we get asked all the time by our doctors? I don't know if my 8 is the same as what they consider an 8.
The only time I ever say "10" is immediately after a difficult surgery, before the pain meds work. Or when they don't work at all. If "10" is the worst pain you can imagine, it is not something I can control with my methadone or morphine. Nothing takes the pain away, but at least my meds make it tolerable.
Sorry, I got a bit carried away
I also wanted to thank you, Kelly, for your comment about OA. Because a lot of people think of OA as "just arthritis". I have very severe OA throughout my body. In my case, I have more pain from my OA than my RA. The thumb joint replacement and lumbar spine fusion were done because of severe damage from OA. The joint where the thumb joins the wrist was completely destroyed from it. And every level of my spine has very damaged discs and osteophytes.
So, yes, I do take the pain of OA very seriously. But I know the pain of RA is also very serious and hard to control.
What I mean is that the worst pain someone else feels is the worst for THEM, as mine is the worst for ME. Not that you don't hurt as badly as I do. Everyone's pain is important to them and just not to be compared to anyone else's. Does that make any sense at all? I know what I'm trying to say. I just hope it is coming across right
Okay, I'm going to stop now, I've either made my point or everyone thinks I'm a loony-tune.
Hugs to all,
Nini
I don't think any of us mean people with oa through their whole body or someone waiting for a hip replacement. The people that annoy me are obviously very fit and spritely and ask what is wrong with me then launch into a huge moan about how they have it in their hands, the hands they are using with no trouble at all. My mother in law is one of them. I told her I had been diagnosed with ra and she immediately said I have that. What she actually has is a touch of arthritis in her fingers which hardly bothers her. It can be very annoying. I'm not saying for one minute that people with severe oa don't suffer and if they were in great pain I would sympathise with them.