Tuesday, May 5, 2015

Dear Healthy People

May is Lupus Awareness Month. It is a month wherein we are all bombarded with facts and figures, statistics and cute graphics. And it does, I am sure, raise awareness at some level. But I was wondering how much awareness is being raised about what lupus is actually like. To those of us living it, I mean. So I started thinking...what do I want the healthy people in my life to know about lupus? Forget the facts and statistics; the fact is that lupus really sucks. And I, for one, would like to explain why:

Lupus Hurts: As I've written about before, lupus is extremely painful. Having lupus is like having several sprained joints all the time. Or, quite often, like having every joint in your body sprained. It hurts like hell. Remember that time you sprained your ankle and it was all swollen and painful? Yeah. That's normal life for us.

Lupus is Exhausting: The fact is, a lupus patient is always tired. Always. Unless, of course, we've just had 1000 mg of steroids shoved up our veins, in which case we're bouncing off the walls like a chipmunk on crack. But otherwise, we feel like stoned sloths. All. The. Time.

Lupus is Frustrating: This could be a whole blog in and of itself. Lupus is so frustrating I can only begin to describe it. Most of us remember how life was before we got sick, and we would give an arm, three fingers and a foot to get it back. We remember being able to open jars, remember our spouse's name, and (gasp) stay up late at night. We know you remember it, too. And we know that there are some of you who are silently (or not so silently) judging us for not being who we were. Well, tough. We didn't pick this disease.

Lupus is Unpredictable: We don't call the shots in this disease. Some days we may be able to approximate normal, but there are other days when the best we can hope for is to stay out of the ER. And, (pay attention, this is critical), we don't get to choose which days are which. We don't choose which days we flare. We can't plan ahead. We don't want to ruin plans. We don't try to get sick on the day of your wedding. We do everything we can to prevent it. But we don't get to choose.

Lupus Takes Our Memory: Brain fog is a real thing. Think back to the last time you were sick. Like, really sick with a nasty bug. Remember how your brain didn't work properly? Yeah? Well, that's the state under which we are normally operating. We live by post-it notes and cell phone alarms. If, of course, we can remember where we put the damn things.

Lupus Screws with How We Look: Lupus gives us rashes. It makes our hair fall out. It makes those of who used to tan have to avoid the sun like the plague. It gives us bruises. It can make us gain or lose tons of weight. This royally sucks. Not only that, but after all of these changes have taken place, we still have to deal with jerks who look at us disdainfully and say, "But you don't look sick."

Lupus Drugs Suck: Steroids, chemo, anti-malarials, immunosuppressants, etc. The list goes on and on. Lupus drugs are very different, but they all have one goal in mind: they are designed to kill the immune system before it kills us. So...they're basically poison. And they make us feel like shit. It's better than dying, but it's not a lot of fun. And we're often on them for the rest of our lives.

There are many other things I wish I could explain to healthy people...how much I miss being able to do sports, how scary it is to date people, knowing that they could leave you because of your illness, the uncertainty about the future...the list goes on and on. But I guess I'll leave off with this take home message: lupus sucks.
Just another day with lupus: IV drugs are such fun!


  1. Thanks for sharing. Life sucks but it beats the alternative. Hang in there!

    (Hmm...brain fog...bouncing off walls at times...sounds familiar...maybe...if I could remember...)

  2. Is this shareable? You hit it on the head. It is definitely better to be alive! And so we celebrate everything we can, but sometimes pain and fog doesn't let us.

    1. You're always welcome to share any of my posts!

  3. To be honest, I'm relieved to see that you have the energy to gripe on your blog. It is less of a worry than extended silence. I love the purple scarf. But I will not tell you that you don't look sick because . . . I'm afraid that under that provocation you could still move fast and hit hard--and any damage you did would be deserved, to.

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