From RA Guilt to Gratitude
We may feel relieved to receive a diagnosis or find a treatment that works. We may be thrilled at being able to do the things we want when everything is going well. We may also become depressed from always needing to manage the disease, its symptoms, or just keeping up with the demands of a chronic life.
The emotional rollercoaster can at times feel quite daring and dangerous with unexpected twists and turns, spins and barrels, or sudden drops.
One emotion that we don’t talk about enough is GUILT. Guilt for canceling plans; guilt for not being there for others; guilt for being a perceived burden on family, society, or the healthcare system. Maybe we fear that we disappoint others, or more likely, we sincerely hope not to disappoint ourselves.
Guilt can be insidious. It serves to keep us down and tends to worsen our impression of its root cause (no matter what that cause, external or internal). I’ll boldly say that much of the time we make ourselves feel guilty even when our loved ones are supportive and wish the best for us.
But what if the guilt is coming not from the several things you can’t do, but from the things you CAN do?
Sounds silly, doesn’t it? Feeling guilty for being ABLE to do things or feeling self-conscious about sharing positive news or about enjoying a bit of that elusive thing called remission.
Not long ago I was at a meeting with other people living with RA during which we were asked as a group about remission. What does remission mean to us? Who had achieved remission?
I have a confession. I was hesitant to say too much because unlike some of the other RA folks in the room, I agreed with my doctor when she determined I was currently in remission. During a recent appointment, I reported no pain or swelling during the past couple of months. (Never mind, I honestly forgot about the minor flare-up I experienced earlier in the summer while we were talking).
I had no tender or swollen joints when she examined me. My inflammatory markers remain low.
I’m doing great!!!
I feel guilty saying so because I know that so many people are not doing well. There is so much pain and angst within our online RA community that sometimes it feels unfair to talk about the good things. But I was encouraged to do just that.
Now this doesn’t mean that I don’t experience the frustrations or disappointments that come with managing this disease or the effects of it. My remission may be clinical or drug-induced, meaning I absolutely must stay on treatment to stay this way, but it’s still a huge blessing.
Previously there have been people who’ve left me comments or messages after reading a post which indicate they doubt that I know what “real RA pain” is like or that I must not have RA if I talk about pain from other types of arthritis such as osteoarthritis. But there will always be haters and I shouldn’t have to feel like every discussion about feeling well has to be contrasted blow-by-blow with the once excruciating, please-just-chop-my-arms-off, can’t-even-hold-a-pencil-without-crying, will-this-ever-end type of pain I once experienced.
Instead I just want to simply say that I am so very THANKFUL beyond words to be doing so well. I am able to do the things I want by planning ahead or making small adjustments to avoid aggravating pain or swelling. I don’t experience overwhelming fatigue or brain fog the way I once did. I am very fortunate.
So this Thanksgiving season, I’m going to appreciate all the good and be bold enough to share that living with and talking about RA doesn’t always have to be negative. It’s important to remember that I too wanted to know that things could get better when I was suffering before and to have hope that there would be days that RA wouldn’t be the focus of every thought or action.
Let’s work together to spread more positivity and hope. I’d love to read about some of your own victories, no matter how big or small, as I’m sure others would as well. So please be bold and share in the comments. We all need to know that RA doesn’t always win.
Have you shared tips on how to manage RA with anyone before?