5 Things To Never Say To Someone With Chronic Illness

Chronic illnesses are scary for everyone involved.

When someone tells you they are chronically ill, whether it’s someone you love or a complete stranger, you might tense up, stutter, and have no idea what to say.

You want to help them, you really do, but you have no idea how. You’re terrified you will say the wrong thing and just make them feel worse.

So I’m going to lay it out real simple for you and tell you the 5 things you should never say to someone with chronic illness.

1. “But you don’t look sick.”

Well, that would be exactly why they call it an invisible illness.

Many disabilities and illnesses are invisible. This means symptoms can only be felt and experienced by the person, not seen by other people.

So by definition, of course, we don’t look sick.

The majority of people with chronic illness have been dismissed by doctors who didn’t take their symptoms seriously. Diagnoses can be delayed for years for this very reason.

When someone tells you they have a chronic illness and you tell them they don’t look sick, you might make them feel invalidated, even if you mean this in a good way.

2. “Have you tried…”

If I had a dollar for every time someone asked me if I have tried…

• yoga
• a carnivore diet
• a vegan diet
• paleo
• more exercise
• less exercise
• stopping prescription meds
• lemon water
• keto
• a juice cleanse
• just celery juice

… I could pay my next medical bill.

About a week ago, I was sitting in the hallway of my building when some guy came up to me and started talking to me. Here’s how our conversation went:

• Him: “You’re the sick girl, right?”
• Me: “Um, yeah?”
• Him: “Have you heard of the carnivore diet?”
• Me: “I’ve heard of it, but I’m vegetarian.”
• Him: “What?! Why?! Meat will cure you.”
• Me: “My doctor fully supports me being vegetarian.”
• Him: “What? Your doctor should have his medical license revoked!”
• Me: “I don’t realy know what to say to that.”

I wish I was making this up. I think he was partly joking, at least I hope he was, but I was still sitting there in shock with no clue how to respond. I didn’t even know this kid’s name.

When they’re all laid out like this, you can see how these conflicting “solutions” are beyond frustrating to hear. For each person saying one of these though, their heart truly is in the right place. Unfortunately, it is not helpful.

Chronic illnesses are so complex. Doctors who went through medical school, have run countless labs, and know our complete medical history don’t have a clue what’s going on most of the time and don’t know how to cure us.

So in the kindest way possible, neither do you.

Unless you are a medical professional and the chronically ill person in question asked for your advice, I guarantee they are not asking for it.

When someone tells you they are dealing with chronic illness, they are not looking for advice, they are just looking for support. So just be there. If they need a moment to rant or curse out their body, just be there and be that shoulder to cry on.

I promise just being there is all you need to do.

3. “You don’t feel good again?”

“Yeah, sorry,” or, “oh, no! I’m okay! Don’t worry about it!” is how I end up responding when someone says this to me.

I immediately feel guilty. Guilty for feeling sick again, for talking about it, and for how it might affect other people. I worry I was complaining and that everyone thinks I am being dramatic.

Most of the time, the intentions behind these words aren’t mean at all.

They come from a place of concern or just utter shock because they don’t understand the severity and chronic aspect of chronic illnesses.

Either way, I feel like a burden when someone says this to me.

So even if you have positive intentions, there are many better ways of saying this.

4. “You need to be more positive.”

Okay, first of all, I am.

Second of all, let’s trade shoes for a day and see how “positive” you are living in a sick body.

That’s what I want to say when someone says this.

I will be the first to admit how living with this has changed my life in some very positive ways.

I can really only speak for myself, but I promise you I can see the bright side. I can see it shining right in my face when I talk to the people I connected with solely over chronic illness. I watched myself fall head over heels in love with life, and I have my janked out immune system to thank for that.

But it still freaking hurts, and it is more than okay to admit that.

Let me put it this way: If I were offered a cure at this very moment, I would take it in a heartbeat. If I were offered a time machine to go back in time and never get sick, I would say absolutely not.

Seeing the bright side took me a very long time, and that is okay. It is definitely not something you can rush.

14 year old me saw nothing positive about this, which is completely fair. My world got flipped upside down and the life I knew was ripped out from under my feet.

It took years of growth and going through all the stages of grief are to get to the place I am now.

5. “You talk about it too much.”

Other than my own mother, I didn’t tell anyone about the health problems I was having before being diagnosed.

Then, even after being diagnosed, I didn’t tell anyone for about a year.

I was worried people would think I was being dramatic. That if I talked about my symptoms, someone would think, “that’s not that big of a deal,” or they would assume I was exaggerating it.

At the same time, I was afraid of anyone feeling bad for me. When someone gave me that sympathy look followed by that little head tilt, I wanted to crawl in a hole. I didn’t want people to be sad for me. I didn’t want to be an inspiration or be told how brave and strong I was. I just wanted to be a kid.

After about a year, it became too much of a burden to hide this huge part of my life. Suddenly I was telling anyone and everyone. I made jokes about it and was happy to answer any questions someone had. When someone made a snarky comment about the way I walked kinda funny or was being quiet, I started saying, “because I have an autoimmune disease. My body is literally fighting against itself,” without missing a beat.

It was liberating.

But I still remember the feeling of my heart dropping to my stomach the first time I saw someone roll their eyes when I explained my condition.

I remember the feeling of embarrassment rocking me to my core when a boy looked at me and asked why I talk about my illness so much. I promised myself I would never talk about it again, and I really wanted to go back to when no one knew.

Looking back, I can assure you I did not talk about it too much. Now, you could argue I objectively talk about it “too much”. But 16 year old me? No way.

The “chronic” in chronic illness isn’t a lie. When you have one, it affects every single aspect of your life and self, and it is there for the rest of your life.

Every chronically ill person should feel comfortable talking about their illness as much or as little as they like. Give them the space to do that comfortably without ever feeling bad about it.

Thank you for reading. I hope you feel a little more prepared in supporting your chronically ill friends

Click here to learn 4 simple things you can do to support someone who is chronically ill.