August 30, 2015
Rheumatoid Arthritis is the Best Thing That Happened to Me
How an autoimmune disease gave me something to live for
Today, I went for a mountain bike ride for the first time in a year. I did it because I was diagnosed with rheumatoid arthritis. Maybe. People who have been diagnosed with an autoimmune disease know it’s a difficult process because of vague coming-and-going symptoms easy to ascribe to everyday life: fatigue, body aches, mild fevers. My doctors have ruled out almost every possible cause but RA, but are not yet ready to make the call. With 3 different positive blood tests for RA, I’m a definite maybe. This is the best news ever, and I’ll tell you why.
I went through menopause early - around 42 - and I noticed a drop in my energy level. I’d been an active, athletic person who enjoyed getting tired and sweaty doing strenuous exercise. I didn’t worry that menopause would change that, but I did notice a small drop in my stamina. But then the drop fell a little more. And then a little more. Then came the morning aches. I told myself “Hey, you’re just gettin’ old, relax!” Then it hurt to stand or walk. Then it hurt to move my fingers in the morning. A lot of self-massage did the trick to get me going. Then came the crushing afternoon fatigue. I thought, “I guess I won’t be super-duper active as I age. But I’m still going to do as much as I can!”
I got a personal trainer, and was shocked at how much strength and stamina and balance I had lost in no time. I blamed menopause. I said to myself “This is just you aging. Accept it.” I became less active and more sedentary week by week. Then came the cognitive problems. Short term memory loss. Confusion. Inability to pay attention to anything. Again, I just accepted this as part of getting old.
Over the course of about two years, slowly and steadily, I transformed into an entirely different person than the one I had known my whole life. I would drive up hills I used to ride my bike up and wonder “How did I do that?? Just looking at it makes me so tired!” I groaned at the thought of hikes with my friends. I quit the personal trainer. I stopped riding my bike every week. Then I stopped riding at all. Often I would watch people older than me who exercised with bewilderment. Why aren’t they slowing down? Maybe it’s not age. Maybe I am just lazy. That was a depressing thought, and so began a cycle of goal setting-goal failing-self hatred that just confirmed my fear: I am not going to be an active person anymore and there’s no going back.
And then came bouts of extreme inflammation and neurological sensations. Even for these I was able to assign reasons: I have a physical job and I must have injured my shoulder earlier at work! A new medication for depression explains the pins and needles all over my scalp. I’ve alway been clumsy and I’m just getting clumsier! “So what if I fall sometimes? Accept it. Sit down. Turn on the TV and relax.” Washing my hair had become a chore. Leaving the house required too much effort. I had moved, but why unpack the boxes? I was too befuddled to figure out where to put things. Man, I really hated being old. How can people live through old age if it's just pain and exhaustion? I'm not even that old! I hate this. I hate myself. I am failing at life. What. Is. The. Point? I began to ponder this question a lot when I was alone and aching.
It was the inflammation attacks that sent me to the doctor. They were happening with more frequency and on days when I knew I hadn’t strained myself. I wasn’t straining to do anything anymore. I decided to mention the fatigue. “Is this normal? I mean, I don’t see all women my age slowing down.” And so began a conversation with her that enabled us to connect some dots. We began the elimination process that has led to a preliminary diagnosis of rheumatoid arthritis, or something close to that. It’s a serious illness with no cure. I am going to face a lot of pain. That didn’t bug me. I was laser focused on something the doctor said that had blown my mind apart right there in the office. Crushing fatigue is the number one symptom for autoimmune disease. When the body spends all day fighting imaginary forces, it wears itself out. Huh! I never knew that. What I knew (because I had told myself) was that I was just lazy. I had lost my love of exercise for no reason and that was just that. I didn’t know my energy was being diverted by my immune system. I thought it had simply left with my periods.
There are about a million therapies for controlling the inflammation associated with autoimmune diseases, and we chose to try one with the least side effects for eight weeks. In addition I am experimenting with the AIP diet, because why not? I won’t die from cutting out the suggested foods for awhile. And I started riding my bike again. Because getting this diagnosis means I’m not just lazy. I didn’t fail at life. I have an illness, and although not curable, it’s treatable! The fatigue is treatable. This diagnosis has given me enough hope to think “you are about to return to the ‘you’ you want to be.” And I couldn’t be more grateful.