In preparation for Rare Disease Day, I've prepared a small list of things people shouldn't say to chronically ill people.
1. I know exactly how you feel. I once sprained my ankle and I had a lot of pain!
Let me get this straight. You sprained your ankle, once, maybe a couple of years ago, and that equates to a life long, life changing illness that needs to be constantly managed for the rest of your life. You do not know exactly how I feel. Unless you are me, and you have the illnesses I do, you cannot know exactly how I feel. You don’t know how I feel.
As a suggestion, try to ask questions and be understanding instead. We will be happy to educate you.
2. Nothing at all.
Society, really, I notice when you are hiding the fact the chronically ill make you uncomfortable. Why is talking about it such taboo? I have health problems. They are a part of who I am but do not define me as a person either. You could ask me how I feel, just like I – or any other person chronically ill or not – would ask you if you had like, a 12 hour stomach virus, which is decidedly not life changing.
3. That sucks.
4. Just get some sleep. You’ll be fine.
We sleep more than the average person. Listen to us. Let us talk. Next time you get into an argument with your brother or sister or parents and have to vent, we are going to say just get some sleep and you’ll be fine. It’s just not appropriate. If sleep fixed what I have, I’d break the Guinness book record.
Instead, try offering us some help - do you need help with something? Do you want me to bring you something, etc etc.
5. I heard about this Dr. Oz remedy if you eat dog shit and take a bath in deodorant you’ll feel better!
We really dont want to hear about the remedy Dr. Oz talked about because if we knew of a remedy we would probably use it. A doctor would probably suggest it and if they didn’t, we probably would find it ourselves or ask a support group their thoughts. You will not fix us. Sorry, white knight.
Point in case: LISTEN. Be supportive. We will appreciate it more than you know.