I’ve failed. I’ve been writing about Rheumatoid Arthritis for a year and I have not been able to explain exactly what it is like to live with Rheumatoid Arthritis (RA). Sometimes, I think that I need to say it louder or use bolder print or stronger adjectives.
One problem is that I try to be nice. But RA is not nice. So how can someone get a clear picture?
I didn’t want to be called a drama queen, so I’ve held back. It’s not that I care what people think – I just want them to listen to the message. Sometimes, you can overwhelm RA unbelievers with too much information and they tune you out.
The Disconnect about living with Rheumatoid Arthritis
The last few months, I’ve been trying to figure out why there is such a “disconnect” with RA. People who live with RA frequently say, “No one understands.” In one of my first RA blogs, I mentioned “the wall” between RA and the non-RA world. At that time, I believed that the wall was mostly due to ignorance. However, the more I learned, the more confused I got.
When I read books or articles about RA or watch commercials about treating RA, I see a different disease than the one I live with or see in others I know. So, I started to wonder what the doctors see. Do they see the RA that we live with? What do they hear when we describe it? Or do they hear Charlie Brown’s parents: “Brwa bwah rwa. Pwah bwah arw”?
Twice in four years has a doctor ever allowed me to describe some of my Rheumatoid Arthritis symptoms. But I still did not feel heard. And no one else has ever asked me what it is like.
Unsolicited, here is what it’s like to live with RA, as briefly as I can say
All of my joints are tender to the touch. At any one time, several joints hurt with sharp pain that is similar to an injury. If I’m alone, I cry out in pain. If I’m not, I just breathe in and pray.
My joints are too weak to do most things. I stumble and drop things. If I use a joint to do anything, then it quickly becomes tired and useless and painful. Everything I lift is too heavy. Everything I do is a struggle. I try to look as normal as possible.
As I breathe, my sternum joints hurt. My stiff jaw makes eating certain things awkward. I eat meat with my fingers instead of using a knife. The sound inside my neck of crackling at the base of my skull never stops. It scares me.
When I go to a store, I cannot keep up with my kids. They look on in horror as I am shoved out of the way while I struggle to navigate. Senior citizens often run the shopping cart into me out of impatience, complaining that I did not get out of their way.
I have a low-grade fever a few days per week. Most days, I feel like I have the flu. I fight nausea as I struggle to inject chemotherapy (methotrexate) every week. I have said, “I’m sorry I can’t do that. I have a disability.” And had someone laugh out loud to my face in public. More than once. I never know when I will lose my voice or for how long.
Even though I never tell anyone what I just told you, most people I know judge me. They let me know that they think I’m a hypochondriac. That’s one reason I don’t mention the list of my other diagnoses like most healthcare bloggers do.
Postblog: Rheumatoid Arthritis is a heterogeneous disease, meaning that yours may differ from mine. Also, mine may differ from mine, over time. This is the nature of the disease and not proof of malingering.
Coming up on the blog: We’ll ask more about what doctors think RA pain is like and why they might not hear what we tell them.
- Part 1 of my description of RA: What Is it Like to Have Rheumatoid Arthritis: The Usage Principle
- Part 2: What Is it Like to Have Rheumatoid Arthritis? Part 2: Why Don’t They Tell You?
- My confusing quest: My Quest for Answers to Questions About Rheumatoid Arthritis
- My first thoughts about the wall: Managing Rheumatoid Arthritis: Transparency and the Wall