Sharing my rheumatoid arthritis (RA) with others was not a choice I consciously made. Due to symptoms that came on strong and fast during my early days, plus a noticeable limp, concealing it wasn’t an option. Explaining what was happening to my body was not a decision I purposely made and was never easy. It meant being vulnerable to friends, family, and strangers that I was in pain, something I preferred to do in private. I felt angry sometimes that I had to share something so personal with people because of its visibility.
Sharing in the earlier days left me vulnerable, a feeling I didn’t like experiencing. However, I needed to get all the thoughts swarming around out of my head. Therefore, this blog was created. Slowly, I found a community of RA friends whose stories don’t necessarily mirror mine exactly, but who understand my many feelings.
It is amazing how years of living with a health condition can change your perspective. It gives you time to figure out who you are as a person and to make changes that needed to be made.
Better understanding of my body
In the early years of living with RA, I didn’t understand my own body and how RA would affect it. It was new, scary, and unpredictable. One hour I was fine and the next I could barely move. How could I explain that to others when it still didn’t make sense to me? Plus, I had so many fears of the unknown. It was too much for me to share, especially with those close to me who had many of the same fears. The voices in my own head were enough. I didn’t have the room to take in theirs too.
After almost 16 years with RA, I have learned a thing or two. RA is unpredictable and not always controllable. I used to put all the pressure on myself to get better. I now understand that while I can attempt to control the foods I eat, the stress I allow, and the physical limitations I place on my body, I cannot stop my immune system from attacking my body. This realization was huge in sharing my story. It is not my fault!
Surround myself with people I trust
Before RA, I was a people pleaser. I feared hurting other’s feelings. This meant that I friended people who abused my ability to listen well. My energy was spent absorbing their feelings instead of figuring out my own. When I needed to share the emotions the come with RA, I found that they often took what I was sharing and turned it into their own story.
RA has taught me that I have to set limits with people but more importantly, I discovered that I needed to surround myself with people who understood that friendship is a balance between two people. I searched out friends who share their story while also listening to mine. It was life changing. Strangely, this lesson has made me much more of a talkative person and I feel safe to share my RA.
Need to Let Others See a Positive Ending
When I was diagnosed in 2004, it was pretty much impossible to find anything online to satisfy my need to know I would be okay living with RA. In fact, the stories I read were scary. Luckily, there are more positive stories to be found online today, but my own story also became better. I made lifestyle changes that allowed my heart and soul to be in a better place. I found medications that work with my body! I started doing the things I love doing again. Not sharing that a life with RA can be amazing just seems like a shame.
I often think of RA like a thunderstorm. It comes in strong, scary, and unpredictable. Sometimes there is damage with the storm, but if you are patient, the storm comes to an end. I have seen enough of these storms with RA to know that my body will calm down. It doesn’t like being in chaos any more than I do. I trust my body. Besides that, I now know that even if my worst RA fears becoming reality, I am strong. I will make whatever situation comes my way a positive one. Why? Because that is who I am. I now have confidence in who I am as a person with RA and I am no longer ashamed to share that with others.
RA is a part of who I am, and I like being me. I didn’t choose for my body to attack itself, but that is what it does. Sharing RA and how it affects it means I am sharing who I am with others and I have grown to enjoy letting others know who I am.