Remission? Real Or Wishful Thinking

The concept of remission was not even on my radar during the first year or so after being diagnosed with RA. My physician and I were far too busy trying to get the disease, the pain, the fatigue, the discomfort, etc. associated with RA under control. I certainly had no clear idea what remission even meant in terms of chronic disease. Did it mean a “cure”? Did it mean the disease simply went away, never to return? Was there something I could do to ensure remission? I really had no idea whatsoever.

What is remission?

Just to be clear, remission is a term that physicians or other people in the medical world use to refer to the absence of disease activity within a patient, in the context of chronic disease or illness. It implies that there is a potential chance for recurrence or relapse but gives no indication of the likelihood of that happening.

So given that, I was completely unaware of any possibility of remission when it first came up with my physician. He explained to me that, in his professional opinion, remission with RA has certain characteristics related to joint pain, swelling, blood work, inflammation markers, etc. That was the clinical version. Truthfully, I have seen the clinical definition change over the last 20 years. So, if the medical world has trouble defining it, then, imagine how tough it would be for me to define it.

The trouble with that term, for me at least, was it gave me a bit of false hope. Like it or not, remission implies some sense of never returning despite the fact that medically that is not the actual definition. So, I found myself wanting to use that term and then being disappointed over and over when the disease came roaring back. I did not want to feel any more disappointment than RA already handed me every day.

In addition, for me, remission was less clinical and more real world. What I mean by that is that no matter what my blood work might say, if I was having pain and stiffness and fatigue, etc. I was NOT in remission. period. In later years, we came to discover that my blood work is not at all a good indicator in my case so suffice it to say that particular marker of remission is not applicable to me.

Remission vs. better quality of life

To be honest, I really don’t use the term remission anymore. I did in the first 5-6 years as medications worked for a while and I was fairly free of symptoms. But as the years rolled by, it seemed silly to talk about remission when flares came and went on regular basis. Medications worked for a time, and then they didn’t. What was the point of saying I was in remission when that could change, and would, in a matter of weeks or months? Instead, I would say I was doing well, or the “disease was largely under control” but remission seemed, and still does, like something elusive and nonspecific. What does it mean today? How is that different from how I would have defined it 10 years ago? The fact is, it seems like a moving target and I don’t need any more targets to shoot for. I am perfectly happy defining my disease in terms of quality of life and daily living goals. That works for me.

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Comments

View Comments (5)
  • Cloudy
    1 year ago

    Thanks for that Nan! I like the idea of “defining my disease in terms of quality of life and daily living goals” I’m so tired of trying to understand why my blood tests don’t match with my pain levels and trying to guess what my rheumatologist will think of my current state and what he will do next.
    I’ve decided to focus on my life as a whole – am I managing my symptoms as best as I can, am I adjusting my activity levels to achieve the best that I can, am I looking after myself and the people I love?
    I’m finding this approach so much more positive than focusing on the disease: is there another professional who can help me, have I done all my exercises, should I be altering my diet, etc, etc, etc
    I know sometimes we need to give the treatment of our disease serious attention but I’ve realized that there are now times when I am doing all that can be done and I can and should move on. My RA is not me.

  • Laurie
    2 years ago

    Well said Dave. Every day is a surprise!

  • Carla Kienast
    2 years ago

    Hi Nan: I agree with you. Quality of life is my main goal as well. Many guidelines indicate patients should stay on medication while in “remission”. Makes me want to ask, “What kind of remission is that?” I know that some patients do go into low/zero disease activity for long periods of time and, hopefully, with new treatments and protocols, more of us will achieve that.

  • Lawrence 'rick' Phillips
    2 years ago

    Maybe real and wishful thinking. I recall Wren saying she was in remission for a few years and recalls it fondly. I have never been in remission so I sense it is both real and a myth. Depending of course.

  • Dave
    2 years ago

    Oh yeah, It’s real. And for me it was wishful thinking that it would last. It lasted about three months (for which I am thankful.) The term “wishful thinking” implies that there is an element of disappointment involved when what we are wishing for doesn’t come to pass. For me, that is not the case. If I am anything I am a realist and as I was enjoying the 3 month period of almost complete lack of disease activity I never abandoned the hope that it would last or the realistic chance that it wouldn’t. No matter what the outcome I live my life one day at a time and travel this RA journey one step at a time. There is no other way that it will work for me. Along with being a realist I am about as stubborn and hard headed as they come and RA will not cause me one instant of disappointment or grief for how it has altered my life. Life is good and I am blessed! Whatever the day brings I will deal with it with God’s help and look forward to tomorrow as I make the best of the hand I am dealt. Is remission possible? You better believe it. How long will it last? Only time will tell. Can I have it again in the future? Again, only time will tell. I can wish for it, hope for it, even pray for it but I refuse to let it get me down if I never achieve it again. I will just move on to the next step on this road that I am traveling and enjoy life to it’s fullest.

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