"But you don't look sick"

It never fails that when you're having a rough day, maybe flaring, you'll run into someone you know. The opening line for that conversation always starts with "How are you feeling?" If I'm honest with them and tell them I'm hurting pretty bad today, it's inevitable that the response you receive is "you look fine, you wouldn't even know you were sick." Argh! I know that they are being nice and trying to make you feel better, but it just frustrates me even more that people really can't understand what your body feels like.

I have great friends and an even better family, but it still doesn't stop me from forcing a smile onto my face at every dinner party and telling everyone that I'm doing fine. It just seems easier sometimes to not have to always explain what you are really feeling like inside. I don't want them to always think of me as being the girl whose always sick. I secretly yearn for the life I had before the Lupus diagnosis, but in reality, I know that life isn't possible anymore. That doesn't mean that my new life can't be just as great as my old one. Just because something's different, it doesn't make it bad. Sometimes people just don't want to know how rough my life can be. Isn't it just easier to say you feel fine?

The diagnosis that changes your life

I was diagnosed with Lupus in early 2005 and went through a lot of trouble getting to that diagnosis. I had a great doctor who finally sat down and sent me to see every specialist the hospital had. I saw 2 ENT’s, a cardiologist, 2 infectious disease specialists (just because the test said I didn’t have mono, they still want to run it again, ugh!), an allergist, an ophthalmologist, an endocrinologist, naturopath and then finally a rheumatologist who knew in 2 minutes that I had fibromyalgia and a week later knew for certain that I had lupus. It was exhausting just getting to the diagnosis. What I didn’t realize is that the diagnosis was only the beginning.

I know that when I learned I had Lupus, my first reaction was, “Thank God I finally know what is making me sick”. My second reaction was, “What’s Lupus?” I would imagine that’s what a lot of us feel like. I was so confused about what the diagnosis meant and what I could do about it. My doctor didn’t really explain what Lupus was, she just wrote out a prescription for Plaquenil, told me it wouldn’t work for six months and to come back and see her next month.

My mind started racing a mile a minute to try and recall anything I’d ever heard about Lupus. Unfortunately, the only thing I could remember was a movie from back in the eighties with Christine Lahti and Matthew Modine, in which the main character died of Lupus at the end. Of course, I know now that the odds of that happening are very small, but for a few weeks, I was certainly panicked.

I’d be lying if I said that it doesn’t still hit me every once in a while that my life has made a big change, but I don’t think it has to be for the worse. Things are different, but they are also better at the same time. I have a fabulous family that is so good to me. I have an incredibly supportive group of friends who not only help me out when I need it, but are also good at helping me stay healthy and not push myself too far. I hope that you all have the same and are enjoying a pain free day! Take care!!


"Life is beautiful music; some high notes, some low notes, but beautiful just the same."

Welcome to my blog

The purpose of this blog is to create a community where people can feel free to express their opinions and emotions about Lupus, chronic illness, and every other syndrome connected to it. Please feel free to leave your comments and I look forward to hearing what you have to say.

"Little by little, life goes by; short if you sing, long if you sigh"