The Dos and Donts of Dealing with a Chronically Ill Person

Do offer your support in the form of a cocktail, ice cream, a kitten video -- this is especially helpful if you have a hard time knowing what to say to people with medical issues. Ice cream says it all.

May 29, 2012 at 10:00am | Leave a comment

 

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My name is Emily, and I have a secret: medically, I am a mess. 

It's not a deep dark secret --  I've written about it here at xoJane, and my closest friends know, but most people in my day-to-day life have no idea how many "just in case" medications in my travel bag.

Let's recap quickly: five years ago I was diagnosed, after a lengthy hospitalization, with a rare arthritis-like condition that comes and goes, wreaking havoc when it's active. Two weeks ago, after a routine trip to the dentist, it was randomly discovered that I have a Cadbury Egg-sized tumor that is non-cancerous and non-noticeable but super lame. I am having it removed before it can damage me any further, but this newest batch of medical bullshit has reminded me why I usually don't tell people about my issues -- it's the way I feel while I'm telling them, and it's the way their faces change.

My medical issues alternately a) embarrass me, b) make me concerned that people think I'm weak, c) are a reluctantly proud part of who I am, d) debilitate me, or e) barely cross my mind. Usually in that order.

In the past, I was terrified to show anyone when I was sick, afraid for how vulnerable and exposed it made me feel. I saw it as a chink in my armor, rather than just another thing about me, like how I bite my fingernails or watch "America's Next Top Model."

I've mostly grown out of that  "This makes me look weak" feeling, thank goodness, but that doesn't mean I tell everyone. I mean, how often do "arthritis" and "head tumors" come up in LA conversation? (the answer: almost never) 

And listen, I'm aware that what I have going on doesn't put me anywhere near the front of the line for "having it rough," and I am not striving to be at the front of that line. Most days, my life is completely awesome. But as a woman who likes portraying herself as being tough, fun-loving, and with her shit together, having to talk about these things makes me feel as vulnerable any dude in the third act of a rom-com, and that's hard for me. 

I sometimes feel as if I am inadvertently keeping secrets from the wonderful acquaintances in my life, but I also don't want to be the person at the party who ends up showing X-rays to strangers and discussing how it feels to retrain your spaghetti-weak muscles after being in a coma. 

So I'm hoping to accomplish two things here. 

Goal #1 Because I know it's awkward sometimes, I'd like to impart a few pointers on HOW TO DEAL WHEN AN ACQUAINTANCE DROPS AN EMOTIONAL BOMB ON YOU.

Please understand, I am not trying to tell you how to be supportive of someone you care about, but it seems to me that a lot of us have a hard time dealing with other people's hardships, so I am merely, as a person who has been on both sides of this type of conversation, offering some coping skills for this potentially awkward  and emotional situation.

Dos

-Do listen and say what you're feeling, which is probably "That sounds like it's been a shitstorm for you." It doesn't need to get any fancier than that.

-Do ask weird questions, if it seems appropriate and you're curious. I had a girl at work ask me if I thought my tumor was an unborn twin, and it was the best laugh I'd had in a week. People always ask the same questions, because those are the questions people want answers for, but other queries are welcome, too.  

- Do, if you would like to, offer your support, prayers, what-have-yous. Not only is that a wonderful gesture, but it can also be a nice end to the conversation, so you can then move on to whether or not you've seen "Moonrise Kingdom." (I'm on the fence, you guys!)

-Do feel free to chime in with any related stories you might have that you think might show your pal you understand what she's going through. 

-Do, if you feel moved to do so, offer your support in the form of a cocktail, ice cream, a kitten video -- this is especially helpful if you have a hard time knowing what to say to people with medical issues. Ice cream says it all. 

Don'ts

-Please don't say "You poor thing." I don't know anyone who feels better hearing that. 

-Don't feel like it has to turn into an hour-long soul-searching talk, and don't feel like it's the thing you'll talk about every time you see each other. It is very unlikely that you are the only person who knows -- more likely, it just came up in conversation.

-Don't worry, you probably don't have what I have, you hypochondriac. 

-Don't don't don't treat the person any differently than you did before. 

-I have noticed an interesting phenomenon in telling people about my medical stuff -- sometimes they will completely minimize and dismiss me. Like "Oh, that's nothing!" It took me a while to realize all of us (obviously including me) are really uncomfortable with medical stuff, and they're just trying to make me feel better. I get it, but try not to do that.

That brings us to Goal #2, which is that I want help.If you are reading this and you have medical issues that affects you sometimes, and you're as badass as I think you are (you read xoJane, duh), how do you handle telling people? Do you have two versions of your story, one for acquaintances that is full of "it's no big deal" and hopeful platitudes, and one for friends that is full of temper tantrums and coughs? Because clearly, I don't have a 100% handle on all of this stuff yet. 

Looking at me, you'd never guess that I have a team of doctors on speed dial, so I'm guessing the same is true for a lot of you too. We all walk the line of feeling "normal" and yet not feeling "normal," we've all been at a party and had someone tell us of their lupus or manic depression, and we will all die someday. Let's figure this stuff out.  

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