I am in Remission. Do I Still Belong in the RA Community?
Cathy Kramer | Sept 21, 2017
Most likely we each joined the RA community when we were not well. For me, blogging during my worst days with rheumatoid arthritis (RA) was like talking to a trusted friend. My pain, fears, and challenges were released to the big, wide web and then comments magically came back validating that others felt the same way and understood me. I became a part of the RA community and it felt good.
But now that my symptoms are for the most part in remission, where does that leave me as part of the community? Do I still belong?
Achieving remission status
Remission is such a hopeful word that many in the RA community aspire to one day achieve. However, spontaneous remission doesn’t come easily. If it occurs, it is generally early in the disease before it has time to completely form.
Remission on my terms
Living with RA for 13 years now, I have my own definition of remission. My RA is finally at a place where I don’t have to plan my life around flares. While I receive subtle reminders every day that RA is still a part of my life, I haven’t had more than minor flares that last only a few days in years. My lab work is continually good. My Vectra-DA tests show that the medications I am on are a good match, although I knew that without the test. My RA is in a good place and that is close enough to remission for me.
Is it unkind to blog when you are doing well?
I remember starting my current meds and almost immediately improving. Like with a good friend, I wanted to share my good fortune with my community. However, I often felt concerned that by sharing my good days, I would appear unkind to those experiencing rough days. As I blogged, I often asked myself, “Is it inspiring or insensitive to share the good days?”
Can I share that I have good days?
When I was first diagnosed in 2004, I searched the internet in hopes of finding folks with RA who got better. For several years, I stopped reading anything because online it appeared that nobody ever got well. Then, after years of working on lifestyle changes and finally finding the right mixture of medications for my body, I started feeling well. One day I realized that I had become the person I looked for all those years. I was finally better.
Where’s the support?
On an extremely bad day, there was nothing better than shedding tears in a post and then receiving loving comments back. Knowing that others knew exactly what I was going through was absolutely the best. But as my RA symptoms improved, comments dropped significantly. I know that RA takes up a lot of our energy and we have to give to those who need us the most, I couldn’t help but originally think, “Do people only like reading my blog when I am in pain?”
Is party crashing RA advocacy events okay?
Like most people, I never intended to be an advocate for RA. In fact, when I was first invited to community advocacy events, I thought they had me confused with someone else. I was just sharing my story!
I’ve been fortunate to participate in many community events over the years and love that I can help share an RA perspective. However, as one of the few people feeling well, I can’t help but feel like I have crashed a party that I have no reason attending.
What if I come out of remission and people have forgotten me?
This may sound extremely selfish, but besides sharing a positive RA outcome, I continue writing for another reason.
What if tomorrow I wake up and my medications no longer work for me? I need our community. I need the support that comes from others living with this disease. It enriches me. It inspires me. It is often the virtual hug that I so badly need and the support that cannot be given by loved ones.
There is a place for me.
I’ve had lots of questions over the years about my identity in the RA community. The funny thing is, the only person who has ever really questioned whether I still belong or not is me. When I have shared my concerns about still being in the community, fellow advocates have always strongly reassured me that I do still belong. My story is still an important one to share.
Friends in the community need me
Originally, I came to the community to share my story. I was looking for others like me who could give the support I needed. What I never imagined is that I would make such amazing friends.
My energy is no longer tied up in trying to work through a major flare or needing a shoulder to cry on. Now is the time I can give back to the RA community from a different perspective. My role can now be one that leaves a positive comment, sends a loving message out of the blue, or reminds community members of ways to take care of themselves.
If you are like me and your RA symptoms are under control, please share. Many times people get better and then disappear. Perhaps they questioned their place in our community as I have. After years of reflecting on my place in the community, I have finally come to the conclusion that there is room for all of us. The RA community needs to see more people doing well! I can’t wait to hear your story.