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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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • noone
    1 year ago

    First of all, thank you Kelly Mack for this encouraging article..
    I’m not sure what I wanna hear or what I should do, but I feel like I want to let this heaviness out and if you can advise me or just wanna say smth, please be welcomed.
    The guy I like (so much) has RA. He likes me too. And we have this strong emotional connection.. but both of us are very careful and slow in our decisions and actions.. but still I’m so confused and frustrated because I don’t know much about arthritis and I don’t know what to do. My whole family is against because there is also a very big age gap between us… and so I’m totally in blindness. So many emotions, so many contradictions… still I wanna be with him.. and I don’t know what to expect..

  • Kelly Mack moderator author
    1 year ago

    Hi noone, thanks for writing. While I can’t advise you, I can say the early time with RA can be confusing and overwhelming. Be kind and gentle with yourself, and seek support. Hoping our community provides help for you in a difficult time. Best, Kelly (RheumatoidArthritis.net Team)

  • noone
    1 year ago

    Thanks Kelly

  • Darla
    4 years ago

    Your attitude of total acceptance of your RA (hard for me),I was so depressed when first diagnosed in 2008. Determination to “live, fight and thrive” each
    day. All you have overcome, wow. My new mantra and possible tee slogan
    Live, fight and Thrive. Thanks Kelly

    Darla Skirvin

  • Kelly Mack moderator author
    4 years ago

    Thanks Darla! Keep fighting! 🙂

  • Andrew Lumpe, PhD moderator
    4 years ago

    Love your positive outlook Kelly! Thanks for sharing.

  • Kelly Mack moderator author
    4 years ago

    Thanks Andrew!

  • Ann Adema
    4 years ago

    I have been wondering about this, this week. Good on you, that you remain happy and positive, especially since having RA since 2 years old.
    Mine started at age 27.. Have had repairs to feet, one hand and wrist, and one knee. One shoulder leaves home occasionally, and the other is worse. The “other” knee is next in line, for repair, according to the rheumatologist.
    Currently, the knee that was replaced doesn’t work after 100 steps in a day..the cane helps; and troubled with gastro issues? (methotrexate? or years of NSAIDS, which I am no longer allowed to take) Feeling like the future is not looking too exciting, or fun.
    I need help with this? Any comments, advise, suggestions?
    Sorry if my comment is WAY too long! Not sure where to reach out!

  • Kelly Mack moderator author
    4 years ago

    Hi Ann, sending you warm thoughts. When you’re facing a combination of damage and side effects, it can definitely be overwhelming. It may sound silly, but when I feel that way I try to tackle one thing and see if there’s anything I can do to feel better. If that works, then I can enjoy a little progress. If not, I will move onto the next issue to tackle. Hope my story can help. We’re here for you–let us know if you have other questions or need support. Best, Kelly

  • Ann Adema
    4 years ago

    PS I am 56 years old now

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