Yesterday, we were in a bathroom at our local children’s hospital waiting in line when the lady behind us turned and said,” You’re not with the Royals are you?”
I looked at her puzzled. Yes, there were hundreds of thousands of people downtown to celebrate the Royals World Series win, but Rosie and I were here so she could have injections for her migraines. I paused, not knowing what she was asking.
“If you’re with the Royals then you don’t need to be here. My daughter is upstairs and I have to go to the bathroom. You don’t look sick,” she said looking at my teenager.
I gave her the stink eye and said, “You are really RUDE. My daughter is chronically ill.”
She turned to the lady behind her. That gal said, “My kid has CANCER and we were here for a PET scan but now I am walking him down to the parade.
I was disgusted. My child was too and she was a little sad. I’ve thought about it a lot since yesterday. We’ve had countless situations where people say things that hurt or offend us. Maybe they have no idea that it will. I figured it was time to put together a post of things you should never say to someone who has an Invisible Illness. Guess what number one is?
You don’t look sick– People that are chronically ill have good days and bad just like everyone else. On a great day, my teenager looks like a million bucks. Guess what she wants to hear? You look amazing. You don’t look sick is a smack across the face because guess what? She still is.
You look awful– Last year, we walked into dance and a mom said, “Geez, you look like you just got out of bed.” Guess what? She had. When fighting an invisible illness there are hard days. Everyone feels them, you don’t have to point it out.
I understand how you feel– Unless you have a chronic illness, you don’t. You can TRY to understand but you just can’t fathom what it’s like to be in pain or sick all the time. Why not try, “I don’t understand how you’re feeling, but if you’d ever like to talk about it, I’d be happy to listen.”
I get headaches too-If you suffer from migraines, there is nothing more infuriating than hearing someone talk about how they have a headache. A migraine is so much more. If you have an illness that leaves you with a headache 100% of the time (many of them do), it’s awful to hear a healthy person’s comparison because honestly, there isn’t one. You can also substitute stomachaches, fatigue etc. for this one.
How come you can’t do anything?– It takes an incredible amount of energy some days for chronically ill people to just get dressed. Add school and work into the mix and at the end of the day, it’s time to crawl into bed. That’s doing a lot, just not what you want them to do.
Why don’t you have to go to school/work?- My teenager would be more than happy to attend school full-time. Unfortunately, right now she physically can’t. For most invisible illness patients, it’s not that they get a pass on obligations, they have different expectations based on disability.
You’re always at the doctor/hospital– I’ve never met a chronically ill person that loves to sit in waiting rooms and deal with doctors all day long. Unfortunately, that’s part of managing illness. When you bring up the fact that someone that’s ill has to spend time at places they don’t want to be it’s like picking a scab on their knee.
Have you tried?– Yes, we have. We’ve tried everything. Diet changes, supplements, biofeedback, physical therapy, essential oils (they really work). We’ve tried it all and you’re probably the 999th person that’s suggested whatever it is. Just stop.
I’m so sorry– While this is a nice sentiment it unfortunately suggests pity. This phrase should never be uttered to someone that’s ill especially since one of the first things that’s taught in illness management is how to NOT feel sorry for yourself.
It will get better– Maybe so and maybe not. While we’d all like to think that we can wave a magic wand and make it all go away, there’s a reason it’s called chronic illness. There is no cure.
If you suffer from an Invisible Illness, what are the things that you hate to hear?
Sarah says
Thank you so much for this post!!! You are so right on. I have been chronically ill for 4 years now with POTS syndrome and so many people tell me how lucky I am that I don’t have to work and I get to lay on the couch all day. Or they say “you should enjoy the break” Are you kidding me?!! Being ill is anything but a break! Or they assume that I am not actually that sick since (like your daughter) I don’t “look” sick. It’s nice to know I am not alone. Thank you for sharing!
debcb says
So sorry you have POTS. My daughter does too. It’s such a hard illness to get under control.
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Kristina says
my son has Cystic Fibrosis. He is going to be 2 in January. I’ve heard some winners. What I can’t stand is that people don’t get it. People don’t realize how a simple cold to most can be fatal to some children with CF. if I hear some one is sick I don’t go to functions. Plus, I hate that people will not tell me when they are ill. Last Christmas my in laws did that and I was so mad. I’m not asking for people to avoid events. I will happy to avoid them with my son if it keeps him healthy. Things and events are just not important.
debcb says
I don’t blame you. If I had a child with a compromised immune system, I wouldn’t expose them to anything. I completely understand where you’re coming from.
debcb recently posted…Holiday Popcorn Wreath
Tori says
Great list! This is the one I have heard way to many times. “Calm Down! It’s all in your head, your just having a panic attack!” or ” It must be nice to stay home all day and not have to have a real job!” On the contrary, I homeschool three kids, run two businesses all while having Chiari, POTS, EDS, MALS ect. ect. The nerve of some people! Seriously what happened to just being kind?