When Ignorance is Bliss

When I was first diagnosed with rheumatoid disease--and for about 15 years after that--I knew very little about it. In fact, I was downright ignorant.

Now, I know how that sounds. What in the world, you’re wondering, could be wrong with Wren? Didn’t she ever wonder about it? Didn’t she care?

Well, I did, of course. But I was living and working in a U.S. Army community in Germany at the time. The Army post had a tiny library, and there wasn’t a single book about rheumatoid disease in its stacks. I did look it up in a couple of different encyclopedias, but the information was minimal.

My doctor didn’t tell me much about it, either. Of course, I didn’t know what to ask, anyway. Once I got over the shock of learning I had a disease I thought only old people got, I simply accepted it and went on with my life as best I could. There were few drugs available to treat RD in 1987--just a few non-steroidal anti-inflammatory drugs (NSAIDs) and a few DMARDS (disease modifying anti-rheumatic drugs), like gold salts and Plaquenil. I took them all over time, and none of them had the slightest effect on the disease or the terrible pain and disability it caused.

The post librarian found the address for the Arthritis Foundation for me, so I wrote to them, asking for information. A few months later I got a pamphlet in the mail. It was mostly about osteoarthritis; rheumatoid arthritis got about a paragraph, and I already knew the information it contained. I was pretty disappointed.

Still, there’s something to be said for ignorance. I didn’t suffer the angst and guilt that so many young mothers, like I was myself at the time, go through today. They worry that their RD will keep them from being good mothers. They feel bad because they can’t always play with their kids. They worry about what their kids will think of them as they grow up. Will they be disappointed in their mom?

I didn’t worry much about those things. I couldn’t do everything with my six-year-old daughter that I had before RD stepped so rudely into my life, so I did other things instead. We still explored a lot of Germany together, even though I had to walk very slowly a lot of the time. I read to her every night, even after it seemed like she was probably too old for it, because that half-hour was our special time together and we both treasured it. We rode our bikes together, and if there were times when I had to beg off, she always understood. Maybe I couldn’t play soccer with her or run races, but the time we spent together was good time. I always made sure she knew how much I loved her.

After she grew up, she assured me that she’d never felt slighted because I couldn’t do everything with her. In fact, she was surprised I’d even asked such a question. Instead, she said she was glad and grateful that I'd raised her to be independent and think for herself.

I have a very cool daughter, don't I.

Being ignorant about what RD could do to me also meant that I did things I might not have, had I known. For instance, I took skiing lessons in the Alps for two winters in a row even though my RD frequently struck my knees and feet. (And my shoulders and hands.) I figured if I had a bad flare up, I’d just stay in the lodge and drink cocoa. As it turned out, the stiff ski boots helped me stay on the slopes several times in spite of flared joints, though they certainly hurt like … well. You know. And though I cried with pain later on, I was proud of myself each time for skiing anyway. I still am.

I didn’t know that RD caused fatigue, either. Because of that, it rarely bothered me. Oh, I certainly battled it, but I blamed it on my busy life. I worked full time, I was a wife and mom, I took care of our home and all the chores, did the grocery shopping, and had a social life. I walked the dog, I ran the errands, I went to the after-school events. Pain frequently kept me up during the night, so it was easy to blame my fatigue on lack of sleep. Sometimes what you don’t know can’t hurt you.

I’m not condoning ignorance. I can’t express how glad I was when Al Gore invented the Internet so I could finally learn about my rheumatoid disease! Knowing about it has made me a much better patient, and while some of the information I've learned is scary, it's good to know about. I still learn more each day about RD, along with more and more about different aspects of the disease, like how pain affects our lives and how the drugs we use to treat the disease work inside our bodies. I wouldn’t go back to being ignorant about my RD for anything, even though it really was occasionally blissful.

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