One of the hardest things to deal with, after leaving a rheumatologist’s office with a new diagnosis, is the ignorant comments from friends. Our society lives with the delusion that given any aches and pains, a trip to the doctor will result in a diagnosis and a prescription to make everything right again. Wouldn’t it be nice if that were how life really worked?
With a new diagnosis, wanting a listening ear and a little sympathy while we try to get our bearings and figure out what happened to our life, it’s distressing to be dismissed with a shrug and insensitivity:
- Oh, I have that, too, in my little finger
- Aren’t you too young for that?
- Just take a Motrin
Recalling those days, I try to be supportive when I meet others facing similar challenges. I was surprised then, a few weeks ago, by one man’s response.
After shaking hands, I thanked him for not squeezing too hard. His wife (standing beside him) said, “Well, he has arthritis.” Guessing that he’s about my age – maybe a bit younger – I asked, “Oh? What kind?” and was informed that he has polyarticular arthritis. Thinking to lend a little support, I mentioned that I understand, since I have RA. He snapped, “Well, mine’s worse! It’s in every joint.”
I was taken aback. The online community is extremely supportive of one another, so it was shocking to think I was offering understanding/commiseration and have it thrown back in my face, and also have my circumstances belittled.
Inside I was seething. How dare he! What kind of idiot automatically assumes his condition is worse than someone else’s? How could he remember a long word like “polyarticular” yet not know enough about it to realize what a jerk he was being? If I were ten years old again, I’d have shouted back at him, “Oh, yeah? Well that’s not even a real diagnosis! What ICD-9 code is your rheumatologist using?” Fortunately, I’m only ten in my head, so I kept my mouth closed and walked away.
Later I started second-guessing myself. Maybe I’d forgotten what polyarticular arthritis is; maybe I was confusing it with something else. I looked it up. Polyarticular arthritis means inflammation of more than four joints. It’s a symptom, like “sore throat” or “abdominal pain.” The trick is to figure out the cause, and the differential diagnosis for “inflammation of more than four joints” is a long list of possibilities. It includes things like parvovirus, Epstein-Barr virus, hepatitis B, HIV, gonorrhea, chlamydia, salmonella, lyme disease, multiple myeloma, plus a host of autoimmune diseases such as rheumatoid arthritis, psoriatic arthritis, ankylosing spondylitis, scleroderma, Sjogren’s syndrome, and lupus. It was just what I remembered: the symptom is inflammation in many joints; the diagnosis says which disease is responsible.* Obviously, treatment will vary depending on which disease is causing the inflammation.
I feel sorry for the man. Imagine going through life competing to have the worst disease. I didn’t know it was a contest.
If it were a contest, it’s one I’d be happy to lose.
_______________
*If the doctor can’t figure out which disease is causing the symptoms, unspecified polyarthropathy or polyarthritis is a possible diagnosis (ICD9 code 716.5 ).
∞ itis 
I hear similar comments as well, even after I take a minute to educate whomever I’m speaking with. Everyone has different challenges and they are significant based on your life circumstances. Thank you for posting, this one really resonated with me.
I am use to hearing these comments also, sometimes followed by a sure fire remedy to cure my RA. After having 8 years of experience, I just ignore them all now.
I loved the ten year old comment. Maybe you should have said that to him. I can only imagine the look on his face when he realized you knew what you were talking about. I’m sure he is used to people “feeling sorry for him”. Not much of an award to be competing for, count me out on that competition.
I used to hear such comments about me having clinical depression–“OH, you don’t seem depressed” and “I feel that way sometimes.” Big help!
I don’t have RA, but I hear those comments too, usually in the context of “I have a friend/relative/acquaintance with lupus and she’s a whirlwind of activity! Everyone knows lupus is no big deal these days!” Sigh.
I like your inner 10-year-old. 🙂
I think it is important to a lot of people that they “win” this. I wish there was a way to trade and give them the worst if that’s what they want since I certainly don’t want it all!
Unfortunately he is at the angry stage of the journey. And more unfortunate is that he doesn’t know the cause. We can only hope he isn’t RA as early treatment could possible help him in the long run. It’s funny but I don’t offer up my condition any longer. In fact I never much did but back 13 years ago the “shout it from the roof tops” or educate the world wasn’t high on the priority list. It is today and I recognize this but it still takes some prodding for me to get into an ra conversation. I find online works best for me personally and I use this media alot to move the cause forward. And I have also learned that unfortunately sometimes when we try to reach out in compassion and understanding, our hand can get slapped instead. Your heart was in the right place, it was his that wasn’t.