Living with End Stage RA
According to clinical definitions, I’ve been living with “end stage rheumatoid arthritis” most of my life. Obviously, this phrasing is inadequate to describe my disease, because it may be severe yet I’m very much not dead yet!
For clinical and treatment purposes, RA is segmented into four stages to track severity of the illness. Stage I highlights joint swelling and the increase in white blood cell count, basically the beginnings of our immune system attacking the joints. Stage II moves into visible cartilage destruction appearing on x-rays and other signs of damage from inflammation. Stage III marks extensive joint damage and eroded bones.
Then we reach stage IV. Perhaps the big indicator is loss of joint function. Many (if not all) my joints have limited range of motion and some are pretty much fused in place. The part I don’t understand and have read on several medical sites is that the disease is supposed to subside at this stage and inflammation calms down.
Ha ha! Not so! At least in my case, the RA can’t seem to ever get enough. I have several joint replacements, fused joints, and joints crooked from inflammation, but the RA keeps attacking. The damage is slow, but persistent. I don’t have huge losses, but gradually the illness eats away.
None of my doctors have ever said to me: “you have end stage RA.” I think it’s because my RA was so aggressive and advanced at a young age (as I was diagnosed at 2 years old) that I have pretty much always had it. They probably thought, “why point out the obvious when it cannot be altered?” The damage is done.
My treatment focuses on slowing the disease as much as possible and maintaining quality of life. My joint replacements have helped with pain and mobility, but I also continue to cope with joints that are sick or barely functional.
Some of the things I read online say that someone in my condition will experience pain even while resting or low activity (true), muscle atrophy and weakness (true), and decline in function resulting in disability (true, sort of). While all these things are true, it’s also not the whole story.
I do live with chronic pain, muscle atrophy, weakness, and joint damage. I do identify as a person living with a disability. But I also manage my pain, work, and live a full and happy life. Just because I may have “end stage RA” does not mean I have given up!
I believe “end stage RA” is a clinical term, not really relevant to life as a patient with the disease. I don’t like it from the patient perspective because to me it suggests death or at least, a lack of future. My disease may be severe, but I keep on trucking. In this way, “end stage” does not really apply. My RA is not ended and neither am I.
In my mind and when I talk with others about my disease, I describe myself as having “severe RA.” This may be an understatement, but to me it is more accurate. The damage is pronounced and I live with permanent disability, but I continue to live, fight and thrive anyway.
For others with RA, I encourage you to not dwell or be limited by the labels or clinical definitions. They cannot actually define you, unless you let them.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?