Developing Selective Hearing (and other priceless chronic illness skills)

Words can hurt- maybe not quite as much as chronic illness, but they can definitely hurt. I was in a situation recently where a well- meaning person said something completely hurtful about how I manage my illness . . . and they were just making conversation. This person did not mean to hurtful or judgmental; they truly felt that their comments were helpful. They weren’t . . . at all. I realized there were a few ways I could handle the situation; I could get my feelings hurt (and maybe say something equally hurtful in retaliation) or I could trust that the person was not trying to be hurtful and gently educate about the nature of chronic illness. Obviously, the latter was the better choice, but it isn’t always easy to treat others with grace and kindness . . . especially if you feel misunderstood.

In the past few weeks alone, I’ve had people comment on me not working (when I look “completely fine”). I’ve had people tease my husband about not standing at an event when he was sitting with me because I couldn’t stand long enough to participate (Don’t worry. It wasn’t the national anthem or anything that was worth the health sacrifice.). Over and over, I have felt like I had to bite my tongue to keep from lashing out at people who truly don’t understand. I don’t want to be so hyper-sensitive to what everyone says that I cannot be around non- chronic illness people without feeling hurt or judged. I realize that not everyone can understand what I deal with, because they haven’t had the same set of circumstances. I’m glad they don’t understand; if they did, that would mean they’re stuck on this journey too. So, in an effort to remain a social being in the world of well people, I have decided to develop selective hearing. I don’t mean the type of selective hearing developed by husbands (“What? You wanted me to put my dishes in the dishwasher? You never told me.”), but rather, a type of selective hearing that will allow us to hear what people mean instead of the crazy (or hurtful) things people say.

What people say: You don’t look sick.

What I hear: You must not be sick. You look fine.

What I will choose to hear: Holy cow! You look incredible! I don’t know how you continue to look so fabulous when you feel so terrible!

(Yes, I realize I’m stretching the meaning a little. But, if I’m going to alter what others are saying, why can’t I give myself a little confidence boost in the process?)

What people say: Have you tried . . . . (insert diet, supplement, miracle pill, Billy Bob’s Magic Elixir, etc.)?

What I hear: If you really wanted to feel better, you would try whatever goods I’m peddling or method I’m supporting.

What I will choose to hear: I truly want you to feel better, and I’m suggesting thing in hopes that something would help you.

What people say: Have your doctors still not figured out what is wrong with you?

What I hear: If your doctors really knew what was wrong with you, you would be getting better. Doctors fix sick people. You should get better doctors.

What I will choose to hear: I regret that this is a chronic condition with no quick fix.

What people say: Wow, you live like a little old woman.

What I hear: Wow, you live like a little old woman.

What I will choose to hear: Wow! You look incredible (and not at all old!) while battling a chronic illness that has reduced your ability to live like the rest of us.

(Again, probably a stretch, but this is all taking place in my head. I can embellish!)

To my chronic illness friends, there are some people that are just jerks. Avoid them. People who say things with the intention to hurt you aren’t worth your time. Don’t invest what precious little energy you have on those people. The people in your life who truly mean well but say insensitive things, try to give them some grace. They can’t understand, and we don’t want them to ever experience this in order to empathize. It’s okay to gently educate. I’ve lost count of how many times I’ve had to say, “My illness is chronic, so I deal with it every day. Some days are better than others, though. Thanks for checking on me.” It’s okay to gently correct- “It isn’t my doctors’ fault that I am not better. I have an illness that does not have a cure, so all my doctors can do is manage my symptoms.” It’s also okay to just change the subject. “You know, I get tired of talking about being sick. Let’s talk about something that really matters- ‘Is that dress black and blue or is it really gold and white?’” (If you missed “the dress” internet phenomenon, I don’t advise looking for it.) Most of all, don’t burn bridges with the people that mean well. If a person cares enough to bring up your illness, they might be worth keeping around- even if they are a little clueless.

To my non-chronic illness friends, I’m sorry that I’m sensitive. I’m sorry that I misconstrue thing you say into something hurtful. Please keep talking to me anyway. I would rather you say a hundred accidentally offensive things to me than give up on our friendship. Thanks for trying.

Now for the fun part, chronic illness friends, what question or comment do you hear that drives you crazy? If so, share it in the comments.

Peace, love ,and health friends.

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2 thoughts on “Developing Selective Hearing (and other priceless chronic illness skills)

  1. Rebecca Howard-Author

    My mom does this to me all the time with EDS and Chiari. I know she means well, but it’s irritating. She can’t understand EDS pain and how there’s not always something to “fix” so she’ll say, “Have they figured out what’s making you hurt yet?” Or, “I wish the doctors could find out what’s wrong with you.” We KNOW what’s wrong: I have EDS, Chiari, cranial instability, arthritis, bursitis, endometriosis, chronic fatigue, and mast cell issues. It’s figuring out how to manage all those things that’s the trouble. 🙂

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    1. tiffanyrearly Post author

      Ughhhh. I feel your pain. I have people in my life that do the same thing. In some ways, it’s nice. I appreciate that they keep hoping I’ll feel better or find more answers. For the most part though, it’s exhausting. I’ve accepted that this is permanent, and it’s easier for me if everyone else does too. Thanks for taking time to read and comment. I hope today is low pain and high energy for you! 🙂

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