The question was asked this week in my Support Group-
What do you consider “remission“? 100% back to normal or being able to manage your pain around 2-3 (on the McGill pain scale)…Just curious.
The question was asked because a good friend of mine has a radio show and people are always asking her if she’s in remission because she sounds happy on the air. She often is. Her symptoms aren’t as nearly as bad as they once were but she continues to have issues all the same.
She’s not in remission but has found a way to cope. Namely it is her radio show that has given her back her life. The interviews, research, interaction and all that goes with it has given her purpose and reason to go on. The radio show is her medication. She is wrapped up in so much information that she learns by personally speaking to doctors, other health care personal, authors, herbalists, social workers, therapists and so many more that she is better able to cope with her pain at the time due to the Distraction!
It has nothing to do with remission.
Which begs the question— Just because we don’t look sick, sound sick or act sick does this mean we’re in remission? Answer? Not at all!
So many people have preconceived notions of what sick should be and often times those who make judgements however subtle are the same who become offended if another questioned them at all.
We shouldn’t have to put on a sad face, drag our leg, clench our fist, limp or show pain behaviors just for someone else to believe we’re in pain.
I am not sure h0w anyone could presume or assume one must be in remission if they are able to cope with their pain or because they do not show it.
The same could be said for me. To many it’s seems as though I am active. I have an online support group, I’m a chronic pain advocate, I’ve had an RSD/CRPS website since 2005, I’ve appeared on the radio show I mentioned above both as guest speaker and co host, I’m the California Ambassador for the Power of Pain Foundation, I represented the Power of Pain Foundation at the NAF (Neuropathy Action Foundation) with Barby Ingle earlier this year, I did the same at the Convoy of Hope in September, I worked as Leader for another Support Group for 3 years and so forth, I have this blog and I work hard to promote RSD/CRPS awareness, promote others and support their efforts to do the same.
All the while being in pain each and every day. Many days I cannot even get up. So many days and hours a week wasted because I can’t pull myself out of bed or wake enough to be coherent.
People don’t see this.
Offline I’m barely out in the public. My most often trips are to pain management once a month or to other doctor appointments. Some people assume because I have these titles or because I try so hard I’m better off than they are. Or that my pain isn’t half as bad. If only they knew!
Sadly, pain seems to be a competition. You must be better of than me, or I hurt more than you. If you can do that you must not be in that much pain, you’re smiling today, you must not hurt, you went on a trip? You must be in remission!
I went to the lake this summer with my husband, daughter, grandson, and close family friends whom I call daughters, would this mean I must not hurt or that I must be in remission?
Naww, all it meant was that I was invited and wanted to spend a day with my family. No one saw that I spent the day laying on a blanket. I couldn’t even enjoy the water because it was too cold and my legs wouldn’t carry me back and forth to test it out again.
Another good friend of mine, best selling author, executive director, who travels several times a year advocating, spreading awareness, speaking on behalf of RSD/CRPS also has received negative comments. And while she has been in remission due to in patient Ketamine treatments, what many don’t know is that during these trips and appearances (yes I do mean “during”) or immediately after, she has to check herself into the hospital for a Ketamine booster in order to go on.
No one likes to be judged or ridiculed..
Remission is Possible – (-Barby Ingle, Remission Possible)
RSD itself is forever.