But You Don’t Look Sick…

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If I had a nickel for every time I have heard “But you don’t look sick…” I have rheumatoid arthritis, which I have found confuses people very much. All too often I’ll hear, “oh I have that in my toe” or “I take glucosamine and my knees are so much better!”

Here’s the thing…there is a darn big difference between rheumatoid arthritis and osteo-arthritis. Rheumatoid arthritis is an autoimmune disease that affects the whole body. While osteo-arthritis is mostly a result of wear and tear on the body, rheumatoid  is a condition in which the lining of the joints (the synovium) become inflamed. Over time, this inflammation can lead to debilitating bone loss and joint deformity. The disease occurs when the immune system mistakenly attacks healthy tissue as if it were a foreign invader, such as an unknown virus or bacterium.

So let’s clear this up for everyone. I don’t have arthritis from years of teaching aerobics. My body is very busy at the moment attacking itself. When my kids come home with a cold, I inevitably get sick and my whole body goes into a flare.

What Is It Like?

I hear this questions a lot. I try and keep my answer as succinct as possible because I’ve learned that people have really short attention spans. I explain that my body aches like I’m getting the flu. I get more severe joint pain in my hands, feet and one hip. It’s not the same every day, but having an autoimmune disease is exhausting.

I get criticized for sleeping a lot. At night, I can’t sleep. I’ve tried melatonin. I’ve tried prescription drugs. (Don’t even get me started about my habit of online shopping while taking sleeping pills.) Whatever the reason, I can’t sleep at night. In fact, I have had this problem for as long as I can remember.

When the morning comes around and it’s time to get out of bed and get the kids ready for school, I have a terrible time getting up. I’m stiff. I’m exhausted. And, I’m even crabby! Now this is our little secret, on mornings that I don’t have to work, I go back to bed as soon as the last child gets on the bus. I’ve been known to take a few hour nap, and YES, I admit sleeping until I know the kids are going to come home.

I’m not proud of it. I feel lazy and horrible, but there are some days when I just can’t do it. My hands and feet are swollen, my body aches, and I’m exhausted. Yet, I’m ashamed to tell you how much I try to sleep during the day.

Changing the Way People Think

I think that’s what I’d like to change the most about having an autoimmune disease – the feeling of being embarrassed to say you need help or you just can’t do something. My kids are awesome. They understand when Mommy isn’t feeling well that there are days where we watch movies all day, or do homework together in my bed.

My kids appear to understand way more than friends and family. Even my husband says, “but you never feel well.” How do you think that makes me feel? Like crap! The fact is, there are very few important events that I’m missing at this point. I am lucky enough to be able to push through my pain on most days, even if it means being out of commission for a few days afterward.

It’s very hard to explain an autoimmune disease to someone. Most people simply don’t get it. I made the decision to start this blog after an exhaustive search for a blog post that explained what it feels like to live a day with rheumatoid arthritis, lupus, or other autoimmune diseases.

I hope to feature blog posts that get to the heart of what we are going through. Your stories, comments and feedback are always welcome.

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