Sunday, April 7, 2013

Thank You For Your Unsolicited Advice


I think everyone who has a chronic condition or illness has heard some crazy, misinformed bogusness from various people in their lives. And random strangers. I get quite a few of these gems from my own family. I just hope you never hear me spew out something crazy and ridiculous.

Crazy Things I've Heard About Lupus

"When you get Lupus, you have to get chemo. And joint pain isn't a symptom." 
Um... Fuck you. Do you really know what you're talking about? This chick who said that actually has Lupus. And was telling another friend on Facebook that she couldn't have Lupus because she has extreme pain in one of her legs and some other stuff. Boy, did I go a little crazy when replying to her ridiculousness. Yes, I understand that some people have to have chemo when they have Lupus. But it isn't a requirement. 

I really went off on her for that one. Mostly because she should know better. Second, she was scaring the poor girl who is yet to be diagnosed with anything. And we all know that stress is the enemy.

"Why do you still have hair? My friend has Lupus and she lost all her hair."
This woman I worked with practically accused me of having hair because she believed I should be bald if I have Lupus. And she asked this almost every time I saw her. And no matter how many times I explained that there are many symptoms associated with Lupus and not everyone gets every symptom. "Also, if you'd like, I can show you all the sores on my scalp if that will make you feel better. And the ones in my mouth. Oh, I also have some in my ears, too. Did I mention I have extreme fatigue and joint pain, also?"

"So-and-so has Lupus and she cured it so you should go talk to her"
This was something my boss at my old job told me. It was a co worker of mine who had Lupus, but was able to cure herself. I'm ashamed to say that as soon as I got home I blogged about all that she told me and posted it on here. I have since deleted that post and I would like to apologize to anyone who read it. There is no cure for Lupus; there are only ways to manage symptoms.

This one hurt me the most because it got my hopes up. Part of me still desperately looks for something to cure Lupus. But I know now that claiming a cure for a chronic disease or illness is like stabbing a knife deep into the heart and twisting it.

"But you're too young to have Lupus"
Of course I am. That's why I just happen to have it. 

That's another one of those painful things to hear. Thank you reminding me of my loss. I really want to be reminded that I'm not going to be able to live as carefree as other people my age.

And my personal favorite: "My friend thought that Lupus wasn't real because he saw it on 'House'. He thought they just made up diseases".
I have no words. *Shakes head*

What's the craziest thing you have heard about Lupus or a condition you have?

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