Appropriate Ways to Comment on a Stranger’s Disability

If you’ve ever seen someone in a wheelchair, with a cane, a port, an ostomy bag, a trach, an insulin pump or any other medical device—you may have thought to yourself, “oh my goodness— what should I say to them?!”

I’d like to take this time to go over some simple guidelines to help make this difficult social situation easier for everyone. To begin, let me give you a little background.

My name is Ilana. I’m 27-years-old, an author, I have a dog, I’m married, I hate eggplant and I’m very good at braiding hair.

Most strangers I meet don’t ever get to know these things—because instead—they want to talk about my visible medical device. I have something called a central line. This is what it looks like:

 

My central line (also called a port) is accessed (or bandaged and connected to a tube) 24/7. I do daily infusions for my disease which help to keep me functional and independent. I have a disease called Dysautonomia. If you don’t have it, you’ve probably never even heard of it. It’s complex and difficult to explain to most people. 

Sometimes, my doctors let me venture out into the real world to do things like go to the grocery store, scour the clearance section at TJ Maxx, or walk my dog. I know this is hard for many people to understand how I can both be sick, alive and living my life all at the same time. But crazy enough—it can be done!

Even stranger? Most days I barely notice I have a tube in my chest because I’m so busy working a full-time job, paying my bills, taking care of my family, and yes— dealing with the symptoms and management of a disease I have always had, will always have, and can never be cured of. Like millions of Americans—I am not yet dead, but actually living with a chronic disease.

People often make comments about my port either over confusion, concern, or curiosity. And it’s okay to be curious! Heck, I’m even a professional patient advocate and spend most of my days diligently educating others on how to help patients lead their best lives.

But even I have my limits.

Because although I am a patient with a chronic illness—I am also a person. A person who, like you, has interests, relationships, goals, and dignity. 

So now that we have some context—let’s zip back to today’s lesson: what NOT to say to patients with a visible medical device or disability.

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Here are actual things people have said to me about my port and here’s what I wish they would have said.

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While I was being measured for a bra at Nordstroms:

“Bless your heart, that’s terrible.”

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What I wish they would have said:

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Why?

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While I was in the middle of a conversation with my mom during brunch on Atlantic Avenue:

“I don’t know what that is. What is that? Is that for, like, cancer?”

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What I wish they would have said:

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Why?

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While I was bringing groceries into my house:

“Hey—what is that thing on your chest?”

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What I wish they would have said:

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Why?

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While paying for a water bottle at a gas station:

“What’s wrong with you? Did you get shot?”

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What I wish they would have said:

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Why?

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While buying dog food:

“If I had to deal with that every day I would kill myself.”

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What I wish they would have said:

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Why?

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Here are some suggestions of what to say to someone who has a medical or visible disability:

  • Hi!
  • How are you?
  • Do you know where the Apple store is?
  • I like your boots.
  • Do you go to FAU?
  • God it smells like farts in here.
  • Do you think it’s going to rain?
  • What’s your name?
  • Do I have something in my teeth?

I hope this helps you manage some of those awkward social interactions with people who, like you— are still not dead.

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Need more helpful advice in your life? Pre-order Surviving and Thriving with a Chronic Invisible Illness for more fun, inspirational, brutally honest and passive-aggressive wisdom.

 

 

 

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