“At least you don’t have cancer….”

The other night I complained about cancer. Not because it’s a horrible disease, but because it gets all the advocacy, press, and sympathy. Now, I’m not saying cancer isn’t serious, but I do wish that lupus would be taken as seriously.

In my current state of health I’ve taken a few too many sick days this year, already hit my insurance deductible for 2013, been to the doctor every week, thrown up at work, sat idly at my desk in pain, and begged to work from home to keep my job and my health insurance. “Not going to happen” my boss said.

I can’t help but think they would be a little more understanding if I had cancer. I can’t help but think my friends and family might rally around me more, donate to my walk, or simply ask how I’m feeling. But, I don’t have cancer, I have lupus.

Sean reminded me I have an invisible illness (No Wego Health, I haven’t mentioned our #HAChats to him. He mentioned “invisible illness” all by himself). He said I make it more invisible by trudging along like I’m not in pain, never asking for help or sympathy, and constantly apologizing for being sick. Most of my lupus symptoms are internal; I rarely have the lupus rash or other skin sores; my hair falls out but I’m lucky enough to have thick hair to begin with so no one besides me notices. Acquaintances can’t see my internal pain; the gut wrenching pain that has gotten worse over the last few months.

It’s a catch-22. I don’t want to be that girl who milks their disease for all it’s worth. You know, the ones who use their illness as an excuse when they don’t want to do something. On the other hand, letting others know I’m sick and not feeling well seems like the only way to get them to take lupus seriously. And then there’s a huge part of me that wants to scream and say “I’m sick! Why do I have to explain myself?”

Most people I run into have never heard of lupus. Which is strange considering lupus affects more people than leukemia, multiple sclerosis, cystic fibrosis, and muscular dystrophy combined. 1.5 million Americans have lupus. So why do I still have to explain myself? Why do people ignore my requests for support or understanding? Why do some people continue to say “at least you don’t have cancer?”

I have lupus, a serious chronic disease that I will have for the rest of my life. It will attack every organ in my body and drain my energy until it eventually kills me. How is that any less serious than cancer?

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2 thoughts on ““At least you don’t have cancer….”

  1. I don’t have Lupus, but other conditions (POTS, Chiari, EDS) and understand 100% what you say here! One of the (many) dichotomies of chronic illness . . . . And so hard to manage
    Thank you for putting it in words!

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