May is Arthritis Awareness month in the US and I have a confession. Every year when Arthritis Awareness Month rolls around, I feel anxious. I feel like I am supposed to make all my friends and family aware of what is going on with my body and the bodies of all of us living with rheumatoid arthritis. This feels like a contradiction because I am also asking people to treat me as if I don’t have RA. I want to be considered a very capable person, not announce I’m someone who may struggle to lift her cup of tea without notice. (This may also come from the fact that despite blogging about very personal things in my life, I am a private person.) Plus, one thing I have become “aware” of over the years of living with rheumatoid arthritis is that the majority of my friends and family are going through their own daily life struggles. Announcing that I’d also like them to understand my life circumstances feels a little like when my mom made my siblings and I go door to door collecting for organizations close to her heart – INVASIVE. What does make me excited about Arthritis Awareness is making sure that every person with an inflammatory arthritis diagnosis is aware of the numerous resources available to them and most importantly, to become aware of who I currently am as a person living with rhuematoid arthritis.
The online support for those of us living with rheumatoid arthritis continues to grow. When I started blogging in 2008, there were only a handful of us. Now, it is hard to keep up with everyone. Social media has grown like crazy and it is easy to find a supporting friend day or night. Resources like Health Central and Creaky Joints/Joint Decisions are allowing us to find resources on the numerous issues we deal with on a day to day basis. We live in a good time where we can get answers to things that our rheumatologist can’t help us with in a 10-15 minute office visit and besides that, as my rheumy says about herself, “I don’t have RA.”
An RA diagnosis has meant so much more to me than pain and swelling of joints. It has meant becoming “aware” of who I am not only with RA, but who I am in general because the two go together. The tricky part of this is that just when I think I know who I am, I change again. But since flares can come out of nowhere, it is important for me to make a conscious effort to find out who I am and what my needs are so that I can play my part in keeping flares at a distance.
The number one thing I’ve learned in 10+ years of being diagnosed with rheumatoid arthritis is that stress is a definite contributor to flares. Over the years, I’ve worked on figuring out what my stress triggers are and because of that, I have a whole new understanding of who I am. In fact, I think I appreciate myself more than ever! I am an introvert. As an adult I have worked really hard to make conversation in social situations and for the most part I do okay, but it wipes me out. Because of this, I need to be more “aware” of my commitments so that my energy tanks don’t run low. I also like to think through what’s on my mind before talking about it. I know it can be hurtful for friends and family to find out afterwards that I was in a terrible flare, but I really can’t talk about it until it is over. This also means that I can’t take on other people’s struggles. I am a good listener, which often gets me in trouble because people like to share their frustrations in life, but often don’t reciprocate. Sometimes I just have to distance people so that I can deal with my flare without anyone else’s issues becoming the focus. I’m also someone who has a hard time asking for help. RA has helped a lot with this because when going through a tough flare, I don’t have a choice.What I have become “aware” of is that people want to help. It’s one of the few ways they feel they can help relieve my pain. I’ve learned to let go of a lot of worries. The wonky fingers and feet used to scare the living heck out of me. Now, I look at the slight changes that have occurred and think of them as accomplishments, just as a I do the stretchmarks on my belly from giving birth.
I am not ashamed of my disease. I am happy to discuss it (if I am not in a flare), but I don’t want it to define me. Rheumatoid arthritis can easily become the focus of my life, but when things are calm, it is time to live life and enjoy all that has been given to me. Overall, my own personal RA journey has given me the “awareness” of just how great my life is and I appreciate the people in my life who are ready to learn more about it, but definitely don’t want it to be forced or untimely.