The Elephant in My Rheum
Remission is that big idea that often hides like the elephant in the room when I talk to my doctors or other Rheumatoid Arthritis (RA) patients. It also hides in my conversations with family and friends. I am asked if I am in remission or if I know those who have beat Rheumatic Disease (RD)? If I let it go too far, the questions begin to swirl about knowing if you are in remission and how a person gets there. I want to just scream; I do not know!
Achieving RA remission
I do not know if this has happened to others, but I personally refuse to discuss remission and I think many others who share this disease agree. I certainly know people in our community who have been in remission, usually brought on by pregnancy or the right cocktail of medications. But most of these people identify remission as a past status. That is, they achieved remission at some point in the past, but they no longer identify in remission as being their status.
Remission during pregnancy
I understand many women experience remission during pregnancy but I am not able to identify with, nor do I pretend to understand, remission in pregnancy as a male. Given the number of articles written about remission during pregnancy, I know it is real. It is just not real for me. Instead, when I say remission, I mean that which occurs other than as a result of pregnancy.
What is remission?
Varying definitions of RA remission
There is an excellent article, that in part, discusses remission. The authors point out that “although the concept of sustained remission has become accepted, there is currently no uniform definition of sustained remission.”1 If there is no clear definition, it is no wonder the topic is not often discussed in patient communities and between patients and doctors that I know. For me, remission may mean a few weeks of no disease activity and yet, for others, it many mean a lifetime of no disease activity. Since there is no agreed upon definition, we each have the right to say what remission is for us. That means the very idea of remission is subjective.
Sustaining RA remission
Ajeganova and Huizinga go on to state, “In general, sustained remission in established RA might be achievable in fewer patients than in early RA, and it is likely not as common in clinical practice as in trials.”1 I think it is fair to say that most people who frequent patient communities are more long term warriors. We tend, therefore, to have either experienced remission and seen RD return or we have not yet achieved remission. Given that a few of us may have experienced what we defined as remission and then had it slip away may be a good reason we do not talk about it openly.
Remission versus maintenance
For me, I have achieved periods where I feel good. But I would never call that remission. I know that I feel better because I exercise, reduce stress, take medication as prescribed, and that I have lost weight. I also know that I would never call this remission because I know if one part of that multipart strategy was sacrificed, I would be right back where I started, if not worse. I cannot call that remission instead I call it maintenance.
I rarely discuss remission
So on those rare occasions I am involved in a discussion about remission, I either do not discuss it because the discussion relates to pregnancy. Or I do not interact because I do not believe I have ever experienced it. For me, at least, remission is a mirage. I have heard of it, I believe it when others tell me they have experienced it, but I do not ever expect to get there. That makes remission the elephant in my rheum, something I simply avoid discussing.
How about you? Is remission something you have experienced? Do you find the concept is an elephant in your rheum?
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?