Tuesday, November 2, 2010

Commentary on Common Lupus Comments

Sometimes I truly wonder about the level of human intelligence. I really do. Especially when it comes to giving advice or just commenting in general. Most of the time I don’t want to tell anyone I have lupus. More so people who are older than me than my peers. I’ll start with the basics. Here’s why:

“But you don’t look sick.” – Thanks, I work hard to look “normal.” I’ve cut my hair short to hide the fact that it is falling out. I use concealer to hide some of the rashes. And you are seeing me fully medicated.

“Are you sure it isn’t lyme disease, a cold, cancer, the flu, some weird infection that my great aunt’s sister’s nephew has, or something new and never heard of?” – Yeah, my rhuemetologist and I are 99.9% sure it’s lupus. But I’ll make sure to bring that up with my rhuemetologist. Hope your great aunt’s sister’s nephew feels better by the way.

“You’re too young.” – Ummmm…. No I’m not. I’m 17. While that may be a bit on the young side, it’s about the right age when lupus shows up.

“It’s all in your head.” - Tell that to my blood work. Tell that to my hair, joints, organs and skin. I’m NOT a hypochondriac!

“You’re on meds for it, so you’re all better.”- WRONG! Taking meds does not equal being 100% again. It just helps to slow down and sort of control the damage. If I’m lucky.

“You know, I’m pretty sure there’s a cure for that. I read about it on this one website that also talked about how eating rats cured headaches.” – Ya know, if I were able to cure my lupus by eating dead rats, wrapping my house in cling wrap or some other crazy thing, I would totally do it. There is not a cure, or else I would be cured.

“I heard that taking this medication (insert random medication for something completely unrelated) makes lupus go away.” – I really don’t think that Viagra is going to make my lupus go away, but I’ll bring it up with my rhuemetologist. Thanks.

“You just need to get up and move. You’re just lazy.” – First, I would move if I weren’t in so much pain. Second, I’m not lazy.

“Don’t get near me, you’ll give me lupus.” – I CAN’T give you lupus. I’m not contagious. This is genetic in my case. You can also cut out looking at me like I’ve got 11,000 eyeballs or something. It’s really insulting.

“Just take probiotics, vitamin Z 16 or any other unsocilicited medical advice and you will be better.” – I’ll bring that up with my rhuemetologist. Thanks. BTW, what is vitamin Z 16? Is that something Batman makes? Just curious…

Yeah, the comments get old pretty quickly. It’s frustrating. It’s annoying. I wish people knew what they were saying is truly irritating to me and that although I’m smiling on the outside, these comments make me cry on the inside.


  1. there's no easy answer for this....some people are just ignorant, others, they mean well.....don't let them get to you -- that will only be more stress for you and, as we both know, stress is no good for lupus.

  2. In all fairness, for about a year I was told that it wasn't lupus. It's hard to know how to respond to the unknown. Often people will do that by brainstorming, or racking their brain for anything they might have heard about that could relate or be helpful.

    I think most people are giving the advice with good intent. We want you to feel good. It isn't fair for someone, your age especially, to hurt that much. You can ignore the advice and appreciate their motivation. They care about you.

    Older people get into the habit of discussing illness and medicine at length. If you sit down with older people, you will almost always hear things you didn't want to know about health (i.e. have you ever heard of someone's bladder falling out? It happens)

    A lot of the stuff they talk about is not mainstream medicine, just something they read on the internet or heard from Joe, who heard it from Bill who was talking to Jenny... etc. Once in a rare while, you might come across someone who can put you in the way of some helpful resources. Keep your ears open, filter out the garbage and thank them for their kindness.