Rheumatoid arthritis and I have been in a relationship for eight years now. The first year was rough as we got to know each other. In fact, it kind of reminds me of the relationships I see now between the teenagers in my kid's circle of friends. There was a lot of crying, lots of yelling, and lots of misunderstandings. Like a teenager in his/her first relationship I was immature in my understandings of RA and l admit that RA brought out a side of me that wasn't very pretty. I experienced hyperventilation over and over. I cried more tears than I have every cried. I panicked a lot. But, with time, rheumatoid arthritis and I seemed to work things out and life sailed by fairly smoothly for several years. Then came 2008 when the meds didn't seem to be working so well and I decided it was time to take a break from medications. The next two years would see the worst of how rheumatoid arthritis could treat me. Let's just say that this was not a healthy relationship. I found myself in worse shape than I had ever been. Every little thing I did was a struggle: walking up and down stairs, sleeping, putting dishes away, dressing, getting out of the shower, even lifting my tea cup to my mouth became a struggle. Rheumatoid arthritis didn't seem to have a care for me at all except in seeing how much it could torture me. The sad news was that I was stuck in this relationship. There was no way out.
For many of us with rheumatoid arthritis or other autoimmune diseases, we know the ups and downs of a relationship with disease. We know that we may struggle to get out of bed alone and then later in the day feel fine. We know that we may jump out of bed but two hours later rheumatoid arthritis has taken over and we struggle to get ourselves into our car. We may have wonderful plans with our family and friends and find that our bodies have been flaring for several days and we have to say "no" again to a fun outing. These ups and downs in our relationship with rheumatoid arthritis often make it difficult for us to understand, but also make it extremely difficult for those around us to understand. "How can you say that you can't lift your purse by yourself when earlier this morning you worked out?" It is confusing to both ourselves and those around us.
In an effort to understand what is happening to our own bodies, I think we often spend a lot of time trying to make those around us understand what is happening to our bodies too. Although I do think it is important for our family, friends and even our coworkers to understand what is happening to our bodies, I think the problem occurs when we set expectations for those around us in how to understand our disease and how to respond to our disease. In our own confusion with disease we often set up expectations for those around us that are impossible to achieve.