What NOT to Say to Someone With a Chronic Illness
I recently did an Instagram survey on what some of the worst things to say to people with chronic illnesses are. I got A LOT of answers. Some people without chronic illnesses even answered! I wanted to share some of the messages that I got here.
“I’ve never heard of it/That sounds made up”
First of all, this is just plain dumb. Just because you haven’t heard of something doesn’t mean it doesn’t exist! With something called ankylosing spondylitis, I wouldn’t expect you to have heard of it.
Instead of saying something like this, maybe try saying “Oh, I’ve never heard of that. What is that like for you?” I can say that we appreciate people trying to learn about it more than hearing bold assumptions about something that we live with every day.
“I get back pain too/It could be worse”
We hear this a lot. Along with “I’m so tired too!” or honestly anything like “Oh me too!” Unless the other person has a chronic illness, of course.
Trust me, we understand that other people have pain. We know that. But having to live with our pain day in and day out, along with the side effects that come along with it, is not the same thing. Our pain does not go away.
A lot of the time when I tell a friend or family member that I’m fatigued, it’s followed with “Yeah I’m so tired too.” When I describe fatigue to people, I say that it’s like walking through a pool of water. Or like my body is so heavy it’s hard to move. That’s entirely different from being tired. I wish I just felt tired, but instead, I get hit with waves of fatigue regularly.
“You look amazing! You must be better now!”
This is probably something that makes me the most frustrated. Invisible illnesses are just that, INVISIBLE! Just because we don’t “look sick” on the outside, doesn’t mean that we can’t be sick.
If our pain could be shown on the outside, it would look like we’re bruised from head to toe. That’s what our pain feels like. Just because you don’t see any obvious signs of pain doesn’t mean that someone isn’t in pain.
“Just work out/Change your diet!”
I was told recently by someone on Tinder to “just do yoga, that will help you. You’ll feel better.” I kind of got really angry with them. I’ve also been told about countless diets to try in the hopes of lessening the pain.
We do not want unsolicited advice about our diseases. A lot of times, the people giving the advice don’t even really know what the disease is. We know what’s going on with us best, and for the most part, we’ve heard of every “cure” under the sun.
“It’s just a phase/It’s all in your head”
This just hurts my heart to even read. The fact that anyone could think that we would make something like this up is beyond me. We don’t want to be in pain. We never asked for this. Why would we make this up?
A chronic illness is not “just a phase”. The word "chronic" means persisting for a long time or constantly recurring. In most of our cases, our illnesses are life long. We are the ones who have to come to terms with that, at least try to make that a little easier on us.
Try to understand and actually listen to what we go through. Having a chronic illness is not an easy thing to have and we deal with a lot more than we’d like to admit. If we decide to voice our problems, just be there to hear us. We aren’t asking you to cure us or to fix our problems.
Another thing that would be helpful to do is becoming educated on chronic illnesses. Maybe if your friend has one, read up on their specific illness. The more educated we all become on them, the less ignorance we have going around. We can start to destroy the stigma and create a healthy environment for us to share our lives with chronic illnesses.
What are some things you dislike hearing about your chronic illness?
Do you use the word disability to describe your AS?