When I was first diagnosed with Rheumatoid Arthritis over two years ago, I was scared out of my mind. I worried that I would die early, my body would one day be filled with replacement joints, and that my quality of life had just gone downhill 100 fold.
With that, a variety of feelings came flooding in. I didn’t ask “why me?” but I did feel anger towards other people. I felt anger that they didn’t know what I was going through, that they complained about hangnails, colds and headaches and I felt anger that lots of people had advice for me. I also felt sadness of course that the life I once lived was now difficult and painful. And it wasn’t just any kind of pain, it was the kind of pain that had me crying several times a day. It was the kind of pain that made me think that child birth might be a piece of cake. It was the kind of pain that made me wonder how many months of this I could handle, and was my life over? My daily routine now consisted of a plethora of medicines with terrible side effects, some that made me scared I would one day have cancer.
Even before I was diagnosed, I pored through the Internet in search of what was wrong with me. I felt like I was dying. Surely I must be, I thought because my body every day was loosing functions. I could no longer turn my head or brush my teeth with ease. If I fell on the floor, not only would it cause excruciating pain, but I would be at a loss of how to get back up. I remember when RA was first starting, I was in a jewelry store and I had crouched down to look at some jewelry. I lost my balance because my knees were starting to be affected and when I reached the ground, I avoided putting any pressure on my wrists because they couldn’t bend or else they felt like they had just been broken. So here I was, in a public place and in pain, wondering how in the world I was going to get back up. And this was just the beginning, I wasn’t even at my peak of the debilitating stage RA can put you in. It was a couple of months later that sitting up from the couch required a helping hand. I was young and fit and yet my body was deteriorating at an alarming pace, swelling in all of my joints and developing noticeable bumps. Even my shoulder bones were poking out. When I woke up in the morning, it felt like I had smoked packs of cigarettes. My ribs constantly hurt. Sleeping was nearly impossible. My rib pain and other joints caused all positions except for lying facing straight up, too painful to bear. I woke up with every turn and twist. I couldn’t even stand the feeling of a blanket on my toes because the weight of the blanket on those small joints was unbearable. Am I exaggerating? Not in the least!
I had begun a new job, one in the industry and I was leaving my old one. My old job could have possibly started the inflammation process. I had been cutting cardboard for 10 hours a day using an Exacto knife. Hour after hour of constant pressure had turned my fingers into swollen sausages. It may have been just a coincidence, but in my opinion, this job had something to do with the onset of my RA.
In the first weeks of my new job, luckily my hands were able to rest. Not only were my fingers swollen, but they had eczema of some sort all over and I kept them hidden. The eczema was itchy and painful. I kept my illness hidden, thinking each day was my last. When I drove in the car in the morning of L.A. traffic I feared getting in an accident. Was I even capable of turning the steering wheel? My head certainly couldn’t turn easily any more. At night when I left my car, I didn’t even bother looking back and checking my surroundings. I wouldn’t be able to run or fight back. I felt as vulnerable as a newborn baby.
At this time I didn’t even have insurance and I was going to a local clinic. The doctor, who had a difficult time communicating with me, (English wasn’t her first language) finally prescribed Prednisone when I was on my last days of even being able to brush my teeth. Thankfully, this drug turned my life around and I was able to function a little better for some time before I got insurance and started seeing a Rheumatologist.
I began to talk about my disease to those who were close to me because hiding it was stressful and difficult. It’s hard to explain when you’re 30 why you can’t do something if you look perfectly healthy.
I realized soon enough that people just didn’t get it. Even in the very beginning as I became less functional and told my husband that I was looking into support groups on-line and I thought I had either Lupus or RA, his reaction was unhelpful. He didn’t want me to join a support group if I didn’t know what I had. It was as if he could just ignore what was happening and somehow it wouldn’t exist. I’m certain there was a part of him that didn’t believe me and felt I was making this disease manifest.
Time went on and my husband began to finally realize I had a real disease and it wasn’t in my head. I think all of my family “gets” that I have Rheumatoid Arthritis. Unfortunately, unless they read about it thoroughly this disease varies from person to person, so much that even the person going through it doesn’t really know what to expect on a day to day basis.
I imagine that it’s not just Rheumatoid Arthritis that has this type of variety. I think that’s one of the most important aspects of learning about a person’s disease is, is to know that just because you read about it doesn’t mean you truly understand it. Even as part of a support group, I realize that just because I have Rheumatoid Arthritis, doesn’t mean I know what another person is going through.
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