Rheumatoid Arthritis: Why Don't They Understand What I Am Going Through?
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.
“I am in pain but my husband and friends don’t understand.” This is something I hear a lot and something I have experienced myself. The truth is they aren’t ever going to understand our disease 100%. How can they? We ourselves often can’t understand it, yet we expect those around us to magically understand exactly what we are experiencing.
“I tell them I am in pain but they don’t listen.” For years I felt that I had to tell those closest to me that I was in pain over and over again. I thought that if I didn’t keep telling them they might forget. They aren’t going to forget. Those closest to us see the pain and believe it or not, it hurts them a lot to see us in pain. In fact, they have the difficult job of seeing our pain but not knowing how to make it better. My daughter had a great idea years ago. When I woke up I was to put a face on the calendar for my kids to look at when they woke up. From the face they could tell how I was feeling. I didn’t need to tell them over and over. Once was enough
“My family and friends expect too much from me.” Many of us with rheumatoid arthritis think we can continue to live exactly as we lived before we started a relationship with RA. It most likely isn’t going to happen. When I met my husband, my life changed and I had to rearrange how I lived my life because I had someone else to share it with. Whether you want to accept it or not, RA is part of your life and you need to carve out time for it. Only you know what your limits are and it is your responsibility to let those around you know what you can and can’t do. With RA being so fickle, you have to listen to your body each day, each hour, and even each minute to see what you are up to doing. Don’t put a responsibility on others to set your limits for you. It isn’t fair to you or them.
"Don’t you hate when people think they know the one thing that will heal my RA?" This drives me crazy. I have a friend that is constantly telling me that cherries will save me. Sometimes when she starts in I want to take my scarf off, wrap it around her mouth, and throw her in a closet. The truth is that not everyone knows how to deal with our disease. Some people need to protect us, some need to talk about it constantly and know how we are doing while others may need to ignore our disease and others need to give us advice. As annoying as it is, they mean well and they are reacting in a way that fits who they are.
“I had tendinitis recently. Is that how RA feels?” I think we have all heard comments like this and rolled our eyes. If they only knew! I guess that is the problem. Until you have experienced the pain that comes with rheumatoid arthritis, you just don’t get it. My teenage daughter has recently had several friends go through break-ups with their boyfriends. Although she feels bad for them, I can tell that she doesn’t quite get the pain that they experiencing and I am glad she doesn’t. The pain of your first break up is awful and until you have experienced it, you don’t get it. Why does it make us so mad when people don’t understand our pain? Honestly, I hope those around me never fully understand the pain I can feel during a major flare.
Last year, 2011, was the best relationship rheumatoid arthritis and I have had in our eight years together. With a combination of the right medications, diet, stress reduction, and more we finally figured out what works for us right now. As in all relationships, this may change but for now we seem content with each other. This year of calm has given me time to not only put my energy into other things I love such as my family, my job, and my physical body but it has allowed me time to peek into the lives of those around me. When we are experiencing a rocky relationship with disease we often forget to look at those around us. We forget that they too may be experiencing ups and downs in their own lives. When I took a good look at my friendships last year I discovered that four of my friends were not happy in their marriages. Two of these friends are experiencing divorce. One of my friends is helping her husband deal with prostate cancer. My sister was diagnosed with acoustic neuroma. My family lost my dad which also meant that my stepmom who was a good friend before she became my stepmom lost her husband. A few friends dealt with teenage depression. Some even dealt with more minor things like how to transition from having children to having teens. (I was definitely in this group). When I looked around and saw all that was happening around me, I was stunned. Life had continued while I was experiencing the worst of my relationship with rheumatoid arthritis. I was in such a bad relationship that was impossible for me at the time to see that those around me were hurting in their own ways. Yet, I expected those around me to understand all that I was going through in my relationship with rheumatoid arthritis. Just as I can’t understand fully all that they are experiencing in their own lives, they can’t fully understand what is happening with my rheumatoid arthritis.
What this year of feeling good has given me is a new perspective. When and if my relationship with rheumatoid arthritis should become rocky again, I hope that I will make some changes in how I approach the pain and disability. I hope that I will not make my life about rheumatoid arthritis again. I realize that I needed to do that originally because this is just a huge change in my life but I want to be more than rheumatoid arthritis and I want those around me to be more than my rheumatoid arthritis. I don’t want to be seen by others as the gal living with RA. I don’t want to keep pressuring people to accept my rheumatoid arthritis and the pain I may or may not be in. I am tired of bogging my family down with my rheumatoid arthritis issues. I want them to see me as more than an autoimmune disease.
The last week of fall classes a group of students stayed after class to talk to me. They said they really appreciate that I always show up with a smile, have a good attitude, and make them comfortable in class. My heart felt happy that they didn’t say “We appreciate that even though you have RA you show up with a smile, have a good attitude, and make us feel comfortable in class.” They see the deeper me. They see the me that loves my job and truly feels happy being where I am even if my feet are yelling out to me. They accept me for being the wonderful person I am. I think that is huge! My job is to accept those around me for who they are and how they need to react to my rheumatoid arthritis and not put expectations on them that are never going to happen.