Ever heard RA can’t be that bad?
Have you ever heard anyone say that RA can’t be that bad? Or more likely, is there ever a day when someone does not hear that RA can’t be that bad? Almost every day someone let’s me know they can tell I’m exaggerating how disabled I am, how bad it hurts, or how hard I am trying. But how do they know?
Folks seem to feel a need to correct people with rheumatoid disease (PRD) about all kinds of things. Families, friends, and neighbors, doctors, co-workers, and strangers tell PRD that RA can’t be that bad in several different ways. Here are a few things PRD hear:
- That it doesn’t hurt that much
- That something is not that heavy or not that far away, not that much to write…
- That their medications aren’t necessary
- That everyone has that (arthritis)
- That trying harder makes it better
You might also like to read:
- What’s the Big Deal about Rheumatoid Disease?
- Hardest #rheum Question From a Reader: Where Do I Go From Here?
How do they know RA can’t be that bad?
This post was inspired by a recent comment from Lisa to 5 RA Facts Everyone Needs to Know:
“It’s very hard when family members say things like ‘it can’t be that bad.’ I would never wish RD on anyone but sometimes you think that’s the only way they will ever understand. It hurts!! The pain I feel is very real.”
Does anyone else wonder how people can be so certain that PRD just need to be set straight?
Certain that we’re lazy. That we’re not really trying hard. That we’re exaggerating?
Like Lisa, once I fantasized that we could help others understand by loaning out our RD for just a day. You know what? Eleven years of 24/7/365 RD in every joint, progressively worsening, has made me braver, especially here on my blog. So here are my plucky answers to those 5 lies:
If RA can’t be that bad…
- It doesn’t hurt – If you are lucky, you will never know how much RD hurts. But I doubt you would tolerate it this well.
- It’s not that heavy, not that far away, not that much to write… Before I got sick, I was stronger, but saying it’s not far doesn’t make me able to walk faster.
- Medications aren’t necessary – How do you know what medications are needed for RD? How many clinical studies have you read?
- Everyone has that –You are confusing RD with ordinary arthritis. That’s like confusing a chainsaw with a hammer.
- Try harder – Living with severe RD is like climbing a mountain every day after being run over by a train. No one tries harder than people with RD to do normal things.
Not that bad RA /RD might not last forever
RA can’t be that bad they say, and sometimes they might be right – for some people. Until it is. It depends mostly on whether the person is dealing with mild, moderate, or severe rheumatoid disease (also called mildly, moderately, or severely active). Having mild RD or responding well to treatments is a world away from the full-blown 24/7 every joint disease. But that can change on a dime. And then a treatment stops working or mild RD becomes severely active. I lived 20 years with the no-big-deal not-that-bad kind of RD (probably a bigger deal than we think) until one day I got the Big Deal Disease.Response to It doesn’t hurt that much: If you’re lucky, you’ll never know how bad #rheum disease hurts Click To Tweet
How can another person judge if one person’s RD / RA is not that bad? They can’t. By what it looks like? Impossible. By how much we cry? Ridiculous, we learn not to cry.
HAS SOMEONE TOLD YOU THAT RD / RA CAN’T BE THAT BAD? IS IT DIFFERENT FROM WHAT THEY THINK IT IS?
Characters in movies and novels usually get cancer, diabetes or allergies, Sonia told me. As I read her book, “I noticed insider knowledge about rheumatoid disease (RD). For example, only someone living with RD would know how much people living with RD hide their illness from others…” Click here to keep reading The Status Update, Book Review.
Have you ever heard that “it’s all right” when you knew it wasn’t? Hurting people are often expected to pretend everything is fine. With so many things, including RD, it will not be all right if we do not do something or find help. Click here to keep reading Church Bells Ringing True.
- Pass the Pickles – and the Croutons
- 10 Things I Wish I Knew 10 Years Ago About Rheumatoid Arthritis
- Joint Redness with Rheumatoid Arthritis