One of the most difficult aspects of having a chronic disease like rheumatoid arthritis is losing your self to the disease. Suddenly your life is about constant pain, doctors' appointments and medications. You wake up each day and wonder, who am I? How did I become this person? You look in the mirror and you just want to look away because you don't see you anymore. I remember a time when I was on 60 milligrams of prednisone and just barely surviving. My face was literally so swollen that it was hard as a rock and shiny. The joints in my fingers were so inflamed that they turned a reddish blue color. I could hardly walk and I had to wear wrist splints daily. Not a very good look for a 27 year old girl. Despite all of that, I was determined not to let anyone know how I really felt. I promised myself that my friends and family would not see me as a complainer. I thought that as long as I "presented" myself in a positive way, then that is how I would be perceived.
No one mentioned the change in my looks. We never talked about it. I never talked about it. To me, it made sense to spare my friends and family the discomfort of discussing my illness. Why burden them with my problems and pain? This was happening to me, not them. I continued to live the best I could all while hiding the reality that was my life. It turns out that I wasn't as good as an actor as I thought I was. I'll never forget the day when I ran into my cousin. He had just catered our wedding 6 months before and I saw him at a restaurant. I walked up and said hello and, when I went to give him a hug, he gave me the strangest look. He actually said to me, "Do I know you?" Ouch! He didn't even recognize me. I was devastated, humiliated and embarrassed. For weeks after that I couldn't look at myself in the mirror.
Then one day my husband just out of the blue looked me in the eyes and said "Cathee you are still you. No matter how much your physical body might change, you are still the same person that I fell in love with. You still have the same heart, the same sense of humor and all of the love in the world to share." He told me to do whatever it takes to find that person again because I deserved that much. I deserved to be me again. Suddenly, it occurred to me that by not sharing my new self with others, I was slowly destroying my old self. I realized that keeping up appearances was just another way of stifling my pain. I needed to release my pain and share my experiences. In doing this, I found out who my real friends were and shed myself of those who couldn't support me. I can't explain how freeing that was. I never wanted to be one of those people who sat around in a support group and complained about my problems. I am ashamed that I actually judged those people without ever thinking about how much they might really need one another.
That is one of the most important lessons I have learned throughout my whole experience with rheumatoid arthritis. We need each other. We need to share our stories. I am the only person in my "group" of friends and family that has RA and that can feel very lonely sometimes. So when I share my feelings with them and with others who suffer from the disease, it helps me feel less isolated. When I talk to someone who has been recently diagnosed and I share my story, I can see the relief in their eyes that someone else understands. Isn't that what we are all seeking, acceptance and understanding? The thing is you have to share your story with those who are close to you in order to get the support that you need. I used to think that keeping up appearances had its own power, but in reality all it did was further isolate me. There are going to be people who just don't get it, and so be it. But I assure you that your loved ones want to be there for you. They want to help in any way they can. Sometimes that might just be a simple phone call and other times it may take a lot more. Regardless, give yourself at least that comfort in knowing that you are not alone. I have given myself a gift by allowing my life to matter again. I know there are many of you who feel the same way.
I have been dealing with this struggle for over 10 years and time is of the essence. I now have a support system that I can count on and most importantly, I have me back. Throughout everything- the flare-ups, the pain and the medication- that is what will carry you along. Try joining a support group at your local arthritis foundation. Participant in online communities (like this one ). Join a warm water therapy class. Do the things you love to do when you can do them. When you can't, try to be okay with that. We have limitations from our illness but they are nothing compared to the limitations we put on ourselves. Share your pain and your fears, and then go on. We have to go on. Talk to your friends, live your life and allow yourself to be you. You may feel like you have no control of your body but you have the power of thought, the power of hope and the power of choice. It's not always easy to see that in the beginning of living with RA, but it is possible.
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Learn more about treatment options for rheumatoid arthritis, including drugs information, diet and exercise, and surgery.
Published On: November 14, 2007