Conversations With People With Chronic Illnesses (Invisibly or Not-So-Invisibly Disabled)

There are a lot of ‘What Not to Say to (specific demographic)’ articles out there, and they kind of make me cringe.

I have this theory.

I’m fairly certain the only people who read them and take them to heart are you already-thoughtful ones who are the least likely to say something hurtful but are POSITIVE that the author is talking about you. You then say to yourself ‘I have probably done that! Oh, the GUILT! Well, since I definitely don’t want to make (specific demographic) people feel bad or angry with me any more than they already do I shall now AVOID TALKING TO THEM.’

I don’t know if there is any one perfect answer, but I know that is NOT it.

So rather than only telling you what NOT to say, here are my thoughts on a mindset that may be helpful.

Have you been pregnant before? Have you lived with a pregnant person? If so then you already have firsthand knowledge of a similar experience.

NOT THAT BEING PREGNANT IS A DISABILITY SO PLEASE DO NOT YELL AT ME.

Visible disability from a chronic illness, having a lovely pregnant tummy.. either one, you’re constantly wearing a conversation piece everywhere you go. There are enough similarities in conversations you find yourself in while pregnant that you can use those experiences as reference for how to talk and what to avoid with disabled people.

Here are a few:

Point-blank exclaiming “What happened to you?!” to a person on the street is the same as shrieking “Are you pregnant?!” – it’s startling. It’s attention-grabbing. It’s making a scene that can go all SORTS of wrong. Instead maybe say, “Hi, how are you? Haven’t seen you in ages!”

“Another lady I know with (whatever disease) isn’t as disabled as you are!” is the same as “Wow you are WAY bigger than I was!” – don’t say it. Instead try “I like your shirt!”

“My friend was diagnosed at your age and she was in a wheelchair within a couple years.” is the equivalent of “My friend had a miscarriage at that stage.” – don’t say it. Instead try “did you get any hail from yesterday’s storm at your place?”

“Have you tried going gluten/dairy free?” is the same as “Are you sure it’s not twins?” – don’t say it. Instead try “is there a local restaurant you would recommend?”

“Have you tried essential oils?” is the same as “Have you tried essential oils?” – don’t say it. Instead try “anything fun planned for this weekend?”

Sure, some people aren’t fans of small talk, but it’s more respectful than the other options. Right? How many of you had really cutting but funny responses that you WANTED to say in response to the other comments or questions but if you had said them then YOU would be the jerk?

It’s holding a mindset of empathy and an awareness that we are not all that different. Pregnant women are still people who happen to be incubating a new person – they deal with it, work around it, and function in society. Disabled people are still people who happen to have something that is different physically – they deal with it, work around it, and function in society.

A pregnant woman hears well-meaning comments and opinions constantly, and gets to keep a happy face through it all. Even after, say, the 10th person THAT DAY comments how big she’s getting (aside: high fives to anybody else who has been pregnant while working retail).

In a similar way, people with chronic illnesses hear a lot of comments and treatment suggestions, and chances are slim to none that you have any knowledge or information that they have not already looked into, investigated, or heard about (and likely discussed with their doctor six months previous).

Probably safe things you can ask if you find yourself talking to a person about their chronic illness: General disease information. How it works, how it affects them personally (everybody is different and what is worse for some is no big deal for others). What treatments they’re seeking.

However, be aware of your response and your facial expression. You are thankful they are speaking to you about their personal experiences at all. You are not listening with the purpose of then offering suggestions, you are listening to gain knowledge. Period. Your sole job is to be interested and put on your matching ‘wow, that’s only fascinating and I have no opinions on that!’ face.

Because (I may be speaking to myself here, too) ‘Isn’t that just quack medicine?’ is the same as ‘well hopefully she doesn’t get her dad’s nose!’ – don’t say it. Instead say “that is interesting! It’s so great that you’re doing what you feel is the right choice for you.”

Be aware of the time and place. At my work place, or in a hugely public place, may not be the best time to ask. Although it’s not necessarily bad, personally I’m just a crier and need an escape route. Again, be aware of your facial expression – some of you make these sad cow eyes as a response because yes, chronic illness is a bummer and it is kind of incurable, but my automatic, uncontrollable response to sad cow eyes is to mimic that back and tear up with you. We’ll be blubbering together in a matter of moments. No big deal at church, for example, PROBLEM if I’m supposed to immediately get back to work.

So keep it matter-of-fact, keep it sounding positive even if the words are not, and don’t take it personally if I abruptly change the subject.

“Yes I’ll die early but hey, with my family history that’ll likely still be over 70 years old. *shrug* It is what it is. So how is your family doing? Your new puppy is the cutest thing!”

In case you’re wondering, this is where chronic illness people get their dark humor from if they didn’t have it already.

Keep in mind these are not hard and fast rules, even for just myself. Some days, certain people, it’s fine and I don’t mind. Others, I’ll talk your ear off and love that you’re interested. And some.. I just feel stared at and desperately want to talk about the weather instead.

And LORD KNOWS I myself make huge mistakes and say stuuupid things all the time; I have only forgiveness when people say things that are well meaning but off base. At least we’re communicating, right? Just be aware that people living in a conversation-piece body get the same opinions and personal questions ALL the time.

So. Now that you’ve been a little educated, try to keep it matter-of-fact, overall positive, suggestions-free, and maybe try to avoid the sad cow eyes.

Thanks. 😊

❤️ Sue

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