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.
Do you struggle with insomnia?