Most annoying comments you get from people who don't have RA?
Well, topic says it all pretty much but we all have heard those comments - people offering turmeric, people telling us we don't look sick, people telling us we can't park in the handicapped spot because that's for people who are REALLY disabled and you don't know if they mean really like "severely" or really like "actually" and you just give them a confused look and walk away. You know, hypothetically.
So.... what's yours?
There's a handful but "oh yeah, I have arthritis in my knee so I know exactly how you feel." I sometimes wish RA did not have the word "arthritis" in it, as most people I know assume it's the same as osteoarthritis. I've had family members with osteoarthritis and I know it can be painful but having both of your hands double in size, stiffen beyond movement, and wrack your body with excruciating pain so that you lay in bed crying for hours, unable to feed or dress yourself sometimes for days is a wee bit different.
Try on those people, 'I have a disease called rheumatisms. (It is what my RA doctors said I had leading up to Severe to moderate RA, palindromic rheumatism.) so, it's a thing with more meat in it, that most wouldn't understand, but not OA or otherwise!
I get that too but they have no idea. Their osteo still allows them to do fun things as it is not 24/7. When osteo get bad enough there’s a fix (surgery). We all have that as we get older. But us with multiple types of arthritis plus normal old age stuff do not really get a break.
I cannot even find a decent Rheumatologist who will look at the whole picture and try to help me and it’s been over 35 years 😕ugh, I'm sorry to hear that you're still dealing with trying to find a rheumatologist after 35 years! What a frustrating and discouraging situation. Please know that this community is here for you. Some of our community do find that adding other specialists (in addition their rheumatologists) have helped with their "whole picture" care. In fact, one of our advocates wrote about her experience seeking out an integrative doctor in this article that you might be interested in, https://rheumatoidarthritis.net/living/integrative-approach. And this article has more information about complementary and integrative health in general, https://rheumatoidarthritis.net/mental-health/coping-complementary-alternative-therapies. I do hope that you can find a doctor who you feel best fits your needs, and please don't hesitate to reach out here any time. Wishing you a gentle day. -- Warmly, Christine (Team Member)
"The lady I work with has arthritis in her fingers and she says she just takes a Tylenol for it". "Oh, I just thought you were being lazy". Both comments from an ex-boyfriend.
I'm glad to hear he's an EX-boyfriend! You deserve someone who is supportive and understanding. -- Warmly, Christine (Team Member)
I've heard all of the above comments. Sadly many times they come from family members. I'm tired of trying to explain the difference between a systemic auto-immune disease from a mechanical degenerative one. This has led me to limit exposures to certain family members. The list of people I keep in touch with gets shorter by the week.
I was diagnosed with Rheumatoid Arthritis the end of July 2024. It is so early in the disease process that I have the inflammation and the constant pain of RA but I do not have any of the obvious swelling and joint destruction that comes with more advanced disease. I also have Lupus which causes inflammation of all joints and tissues of the body so I do have some trouble walking and use a cane for support. I often get the comment that “you don’t look sick, why don’t you go out ?” What’s there to say? Some people don’t want to “hear” the truth, they just don’t really care.
Hi
. Each person gets to decide for themselves how much or little to talk about their condition, so don't ever feel obligated. I tend to think that if a person brings up the "you don't look sick" line then they have opened things up to hearing the truth or as much of it as you feel comfortable telling. If you are interested in some tips this article from Lynn Marie is an excellent explainer for family and friends: https://rheumatoidarthritis.net/living/disease-explanation. If you are looking for explanations on fatigue this article from Daniel and the comments section below has some great information, including on research into the underlying causes, like how chronic low-level inflammation can impact energy at the cellular level. Sometimes hitting people with the science, even if it makes their eyes glaze over, is exactly what they need if they are going to tell you how you should feel 😀 - but again, it is up to you on how much to say and when, because we also understand just how exhausting it can be to try to educate people (see: https://rheumatoidarthritis.net/living/educating-people-exhausting). Best, Richard (Team Member)
