- I am 39 and have OA, bursitis, and possibly fibromyalgia. My OA is in my hips and I cannot stand or walk without pain. Like many others, getting up from a chair is difficult and I feel really embarrassed if people watch me. I've always battled with my weight and suffered from anorexia as a young adult. So I'm sensitive to being stared at when my movements are awkward or I have trouble turning over or I need to use a cart at the grocery store. I fear that people - even my own parents- assume my size is at fault when really it's my pain level. I also feel that people judge me for having arthritis - assuming they believe it, since I'm young - because I'm a big girl. I'm afraid that makes the disease my fault. But if weight directly caused arthritis, why don't all overweight people have this disease?
- —Guest Yes
Not embarrassed but dependent
- I was just in the hospital. As bad as it was to be a fall risk because of RA, I also found that a large amount of hospital food comes in foil packages. I can't open them myself. For one breakfast, my husband wasn't there and I needed someone to open my cereal, my maple syrup,, orange juice..etc. I rang and explained and was assured help was on the way. No one came. Fortunately the dr from my cardiologist's office, whom I had not met, returned to go over some med changes and I was forced to ask him to help me. He was very proper and polite (stiff), but when he asked about the "cereal bowl too?" I said, well I had figured I could chew my way thru that, he chuckled and all ended ok. I hate feeling so darned dependent. My husband hooks my bra, buttons my buttons when we are in too much of a hurry to use my buttoner. Just lovely.
It bugs the hell out of me...
- When I have a flare up but I'm not embarrassed by it. I've suffered from OA for 25 years now. I was diagnosed at 18. My left hip. Since I work in security it can be hard to stand for 11 hour days. For 8 years I studied aikido and even got my 2nd degree black belt. Before I was diagnosed, I was depressed and missed 2 months of my first college year. I find exercise to be the best medicine although lately I have to turn to nsaids for help with the pain. Pain bugs me. Makes me angry. I think if you stay angry at the pain it helps. Something I was taught in the martial arts is that you control the body, not the other way around. If you can believe that, you can move mountains. And always remember, you're not alone.
- —Guest Joe
I'm not embarrassed I'm ticked off
- I'm 56 and have arthritis in my right knee and hip, as you may expect I have a noticeable limp. Having said that I could care less what people think - it's the limitations arthritis imposes on my day to day life which ticks me off. I found that the more you exercise the more flexible you become. I ride mountain bikes and dirt bikes with the 30-something group and it keeps me young and flexible. The less I do the stiffer I become. The only thing I can't do is walk more than a couple of blocks without hurting. (Saves me from those shopping outings LOL!) I crashed a car into a tree at the age of 19 and the broken bones I suffered then are where the arthritis has developed. Sure it hurts to work out but the alternative is sitting around whining about it and getting stiffer by the day. I choose to be active until I die. I wear copper bracelets (yes they work!) and take Advil when needed. That's life!!!
- —Guest tom
I still feel guilty
- I've had rheumatoid symptoms for 17 years and lupus symptoms for 30 years. I stopped working 9 years ago, have an artificial knee and hip and damaged feet, wrists, shoulders, ankles, veins. I am always surprised when a stranger asks me if they can help me. I still dream as a walker and runner although I use a power wheelchair at home. I think that people who know me see me as not trying hard enough, even though they know I've earned a bachelor's degree and worked 15 years in my profession before retiring. I can't seem to shake the notion that I've done something to bring this on. It has helped a lot to learn of the defects in genes that are associated with the risks in autoimmune disease. But, I confess, I have too many people in my life who believe and express the notion of divine judgment seen in some religions. Indeed, as a Christian, I have to remind myself of the blind man brought before Christ having neither himself nor his family been found guilty of bringing on the condition.
- —Guest simonsez
It used to be
- Early on I found RA to be embarrassing. I've lived in the same small community for many years, worked as a teacher, and am well known by most people. It doesn't bother me so much anymore because these people know what I've been through.
Not embarrassing..just upsetting because
- I am so tired of people saying I'm using my RA as an excuse for not participating in some activities. I do not often ask out of offers, but all I ever hear is "I have arthritis too, and I can still do this or that." How do I respond to this?
- —Guest Jann
Embarrassed? Sometimes. Surprised? Often
- After a few years of living w/RA, I have limited use of my right hand, short endurance times for many activities and many, many adaptive strategies as a result. I go "In" the out doors, so I can use my left hand to open doors. I write slowly and less than beautifully w/my left hand now since my natural handedness is very painful, when it's possible at all. I ask people much older than me to do simple tasks like opening a bottle of H20. I maintain strict dietary habits which help me minimize pain and other RA symptoms. And the list goes on. Does all this embarrass me? Sometimes. But I am often surprised @ the kindness of strangers and the impatience and annoyance shown by the people I know best when they witness my struggle for functionality or are "put out" by my need to rest or refusal to eat foods that I know will encourage or irritate a flare.
- I have had RA for 21 years. I came down with RA 10 months after my only child, a son, was born in 1988. I have had two total hip replacements - the right and left hips in 2000 - and in the next year or two will have to have total left and right knees replaced. Reading the responses from others made me feel better - I dread going to restaurants and getting up which is very difficult for me, let alone that I walk with a cane. I do know that if you move more you will feel better. My family and friends are a good support as needed so that is a blessing. I work part-time in an office and I am on SSD permanently. There are no two days that are alike, but I carry on and don't complain. Hopefully some day they will find a cure or something with less side effects for no more pain.
- —Guest Susan
- I am 28 with RA. I get embarrassed when I am in so much pain that I have to take time off work, or limp because my hip/knee/toes etc hurt or I can't hold a pen to sign a document and when I have to sit down and have a rest whilst out for a walk. I try to think positively but sometimes it's just not that easy...
Sadly it is embarassing for me
- I have so many days where I don't need my cane right now that when I do need it people just don't look at me right. I feel very uncomfortable. I am very early in my diagnosis. I am also very young which instantly draws attention to me when I have to use the cane. I will force myself to not use it as much as possible when I am in severe pain and cannot walk. I would rather limp which doesn't get as many stares at me. I am thankful for now my treatment allows me to not use it very often but yea, it is very embarrassing.
I know I don't look sick
- I think having fibromyalgia and RA is embarrassing because to most people I don't look sick. I get dirty looks sometimes when I park in a handicap parking space. I volunteer for my local PD as a ticket writer for handicap parking violators so I take it very seriously. I also don't think my family understands how much pain I am in constantly. I live alone so I depend on my adult children for help and I know they don't understand why I need help sometimes. I don't want to constantly complain or tell them I feel bad and it's embarrassing for me to have to ask for help. It's also embarrassing because I've put on a lot of weight due to being on prednisone for 2 years. I feel like people pre-judge me based on my weight and inability to move quickly. I think they see me as fat and lazy instead of someone in pain. Since I've been sick, my impression of others has truly changed. I no longer judge someone based on their appearance.
- Yes, sometimes...for a few reasons. My hands are terribly deformed and people stare until they get to know me. Elbows have big knots and I don't wear shoes that show my feet. Otherwise nobody can tell I am as ill as I am. They don't understand why I need to go to bed at 7 PM and not go out at night with them. I hate making excuses people don't understand. They say to just go to bed later and I won't wake up at 2 or 3. They don't seem to understand about the pain that wakes me no matter what time I go to bed. Pain and fatigue have been part of my life for 47 years. I tolerate it without complaining most of the time. I just don't like having to explain what RA is to those who have a little OA in a finger or knee and say they have the same thing. I do have a pretty good attitude about it most of the time and learned to compensate pretty well. I don't ask "Why me" at all. We all have something wrong eventually.
No one really knows
- I get asked often why are you limping even when I think I am doing well. I do not suffer heaps as my meds usually do the job. I do find however when a flare up comes I tend to hide away at home (live alone) as I find it too embarrassing getting up, walking, fumbling with money etc. No one has ever seen me really bad. My body kind of shuts down around 7pm especially in winter. I have had RA for 15yrs, don't think people believe me really & just want me to exercise to lose weight.
- —Guest Vivien
- I park in the handicap parking at work, and sometimes co-workers ask why I'm parked there and then I have to explain to them I have arthritis. I suffer with alot of pain,but I don't show it often because it is embarrassing. I know I should not feel that, but it's hard not to.
- —Guest Frank