Living with Rheumatoid Arthritis: How do you fight an incurable disease?
When I was first diagnosed with rheumatoid arthritis I felt so helpless. As if having the disease wasn’t bad enough, knowing that it was incurable and that I would have to endure the pain it caused for the rest of my life was devastating.
“I didn’t want to be around healthy people.”
My family noticed the difference first. My first Christmas after my diagnosis was awful. I had to have my husband carry me around because the pain in my knees, feet, and ankles was so bad that I couldn’t walk. I felt like every bone was broken. I could barely fake a smile while watching my boys open their presents. Watching them open their gifts was always one of my favorite things to do.
And even after opening presents I spent the rest of Christmas day in my room crying.
Then my friends noticed. I missed my best friend’s birthday party. I just didn’t feel up to it. I didn’t want to be around healthy people. I kept thinking about how unfair it was to me. I wouldn’t even answer any of my friend’s phone calls at all. Can you imagine? I was angry towards my friends because they were healthy. At home it wasn’t any better either. I would not get up off the couch for anything or anyone. I would not get dressed. I would not leave the house. I felt guilty about what this disease was putting my family through, but I didn’t want to take any of the responsibility.
“I couldn’t help that I was sick.”
I missed my son’s very first soccer game. That made me angry to. I still thought that it wasn’t my fault. I couldn’t help that I was sick. I couldn’t help that my life was over. It was the disease that was hurting my friends and family, not me.
All my friends and family told me we were going to fight this disease together. That was easy for them, I thought. They were not sick; they did not have to deal with this disease. How dare they tell me what to do, when I can’t even walk by myself? I thought they were being so selfish.
I remember sitting on my couch one day feeling like my life was over. I felt so alone. My husband didn’t want anything to do with me, after all, my rheumatoid arthritis had ruined his life too. I felt that he was angry with me because I could no longer get dressed, do chores, or even cook a meal. “What about me?” I thought. “Does anyone care what this is doing to me? I am the one who has lost everything”
“My husband was desperate to turn things around.”
I had no fight left in me, and I had spent the majority of my energy and hope on the last couple of years just trying to get a diagnosis. I had no idea that my husband was suffering too, and how desperate he was to turn things around for me.
He sat down, looked me in the eyes and said, "Holly, you have to fight this."
Leave me alone! How dare he tell me what I need to do when he had no idea what this was like for me?
"Please, everyone just leave me alone," I thought to myself. I became angry and upset with him. I did not want to fight this disease, besides how to do you fight an incurable disease?
Fighting Rheumatoid Arthritis with "Rheumies"
Fighting rheumatoid arthritis means different things to different people. How do I fight this disease you ask? I just do. I started researching, reading books, and reading other people’s personal experiences. It took me a while to realize that life doesn’t stop for you just because you’re sick. I started doing walks with the Arthritis Foundation.
I will do my third walk in May.
My team name is the "Rheumies," and with each walk it consists of different people who are there to support me.
I Fight Rheumatoid Arthritis
I fight this disease by making plans with friends and family and actually keeping them. Sure I may show up with a cane, my arthritis gloves, and every other joint in a brace or wrapped in a bandage, but I still go.
I fight this disease by raising awareness even if it’s just spreading the word to my family and friends.
I fight this disease by helping others, mostly those newly diagnosed whose suffering is so familiar.
I fight this disease by living my life to the fullest. Some days are much harder than others, and some days I feel like I am losing the fight. But my life isn’t over because I have rheumatoid arthritis. I can make a difference and I will NOT go down without a fight!
Holly wrote for HealthCentral as a patient expert for Rheumatoid Arthritis.