Monday, November 22, 2010

What not to say to a lupus patient

Some of you know that I have systemic lupus, and for the sake of the continued health and wellbeing of those around me I thought I'd post this list. Think of it as a public service announcement. Also, an explanation for why there have been so many fewer posts this year.

Top ten things to say that will get you smacked by a lupus patient:

10. "Have you heard about [new lupus/arthritis drug]?" Yes. I've been following the FDA's approval process every day. Literally. This one isn't actually *that* irritating, as I know it's meant well, but it does get old after a while.

9. "Have you tried echinacea?" Thanks, echinacea is supposed to boost immune systems. My problem is that my immune system is in overdrive. So, really? Not such a great idea, that one.

8. "Could it be stress?" Well, stress can trigger lupus flares, yes. But stress by itself? No. It's the incurable systemic autoimmune disease that is making me ill.

7.  "You should get out more." Yes, I absolutely agree. I should. But unfortunately I take chemo every friday night, which knocks me out for the weekend. And even when I'm not on chemo I'm often too sick to go out. The fact that I stay home as often as I do is not something I choose voluntarily. Telling me that I should do something I desperately wish were possible is just rubbing salt in the wound. Just don't.

6. "If you only thought outside the box and tried [insert alternative medicine] you'd be fine." I'm not going to claim that alternative treatments don't have value. I'm sure that some do. And I'll sometimes  try those that won't hurt me even if they don't work (such as acupuncture). I do genuinely appreciate it when people make suggestions for things that they've found helpful; I've had great recommendations for acupuncturists, chiropractors, etc., and I'm grateful for peoples' taking the time to recommend them to me. However… the problem with alternative drugs/herbs/etc is that some of them DO work, in ways that are not fully understood. Maybe they boost the immune system… well, again, that is NOT a good thing for me. So while I appreciate suggestions, if you start judging me as being "unwilling to think outside the box" because I don't feel comfortable trying your alternative medicine of choice then I'm going to get annoyed. This is especially true if there's an undertone of, "If you really wanted to you could get better." If you say anything along those lines to me you should be prepared to get smacked. Hard. Possibly with a blunt instrument. Repeatedly.

5. "My [insert friend or relation] died of lupus." Uh, thanks. That's very encouraging.

4. "Maybe you're just depressed. Have you tried therapy/anti-depressants?" Keep me away from cutlery if you ask me this. As a matter of fact, lupus is a systemic autoimmune disease, not something that is all in my head. Yes, I find being sick all the time depressing, and yes, I will get treatment for that depression if necessary. But no, my being sick is not caused by depression/ negative thinking/ bad aura/ whatever.

3. "You should just take a vacation and go relax in the sun somewhere." Right. Where to begin with this one? First, sun exposure causes most lupus patients' disease to spiral out of control. It's not understood exactly why, but there is NO faster way to make my disease more active than to get even a small amount of sun. Second, I appreciate the thought, but… most of us struggle to get our work done while being really sick. Often we simply don't have the time/ vacation days/ etc. to just "take time off." Thirdly, again, lupus is not a mental thing, it's a physical disease.

2."You're too young to have arthritis/ lupus/ etc." Do you really expect me to argue with this? Or do you think that I haven't figured this out for myself? I've been saying the same thing for 10-15 years. Hasn't done me any good.

1. "But you don't look sick." Ok, I know that you may mean this as, "Wow, you're doing a good job hiding the fact that you spent last night in the ER."  But all too often it comes across more as a "You can't be all that sick, since you look alright." Really? Well, let me tell you that I look ok because I'm wearing a cute hat or thick headband to hide the fact that my hair is falling out, my nails are done because there's not much else to do on a weekend when I'm trying not to throw up because of chemo, and I've lost weight because I'm too sick to eat. So unless you want me to surgically remove some of your internal organs with my fist, don't try to tell me that my appearance dictates how sick I "really" am.


  1. I am screaming!!!! As you now know you can insert cancer in place of lupus in most of your sentences. I don't know exactly what you are feeling but I am screaming after reading the list!

  2. Yes, adding cancer on top of lupus has added a whole new world of irritating comment possibilities. Imagine my excitement.

    Also, trying to explain that you're on chemo for lupus, not for cancer, even though you have had cancer recently? Not so easy, as it turns out.