Two birds in a heated discussion

Disease Management:

What Not to Say to Someone with a Chronic Illness

March 5, 2020

If you know someone – a friend, parent, sibling, patient, coworker – with a chronic or invisible illness like autoimmune disease, you may be unsure of how to talk to them, and how to respond appropriately in regards to their health.

It can be tricky, especially since good intentions are often drowned out by poor word choice. It’s important to reflect on where your comments are coming from – confusion, lack of knowledge on the subject, difficulty empathizing, etc. Or maybe your friend or family member’s situation is triggering in some way, and you’re speaking from a place of trauma. The important thing, however, is that you care and are self-aware enough to examine your own language and learn better ways to respond.

Below are examples of comments chronically ill people often hear, followed by “translations” meant to demonstrate how the words are actually heard, and suggestions of what to say instead.

8 Things NOT to Say to Someone
with a Chronic Illness

1. “You’re probably just stressed”

Translation: “You brought this on yourself”

This kind of statement plays the blame game. It implies that the person let this happen because they got too stressed, that they are in fact the root cause of their condition. It lacks empathy and disregards any other factors involved. Yes, stress can trigger or exacerbate issues, but it never acts alone. To assume so is to dismiss the person and devalue the knowledge they have of their own body.

Instead: “That has to be frustrating” “I hope you find out what’s wrong” “How can I best support you?”

 

2. “You should do yoga”

Translation: “You’re probably just stressed” *see above

Disguised as advice, telling someone to do some yoga implies one or all of the following:

  • Your friend or family member never thought of trying yoga before
  • You have the answer to their problems
  • Your experience with yoga will be their experience
  • They just need to destress and they’ll feel better

Instead: “What are some things that help you feel better?”

 

3. “It could be worse”

Translation: “Suck it up” “Your experience isn’t valid”

You could make this case in pretty much any situation. For example, you find out your significant other is cheating on you and a friend responds with, “It could be worse. It’s not that big of a deal, at least he wasn’t abusive.” Can you imagine the guilt, shame, and embarrassment you’d feel?

“It could be worse” is a comment aimed at providing comfort, while in fact devaluing personal experience. It rejects a person’s right to feel angry, frustrated, sad, disappointed, hopeless, or any other number of emotions that come with navigating a chronic illness on a daily basis.

Instead: simply listen and be there for them. If you don’t know what to say, be honest and tell them that.

 

4. “Just don’t eat gluten, you’ll be fine”

Translation: “It’s not that hard”

This is an oversimplification of a very complex situation. People with celiac disease (and those with suspected gluten sensitivity) often hear this from their doctors, or even from others who don’t quite understand what going gluten-free truly means.

Changing their lifestyle includes a number of factors, such as social pressures to eat wheat and “fit in”, extreme sensitivity even to crumbs in a toaster or flour dust in the air, relearning how and what to cook, triggering ingredients hiding in familiar foods, anxiety when going out to eat, recovering from a gluten reaction, and the list goes on.

Plus, for many people with celiac disease or gluten sensitivity, just taking care of the gluten is not enough to eliminate symptoms. There are often more pieces to the puzzle.

Instead: ask about their health journey, how they found a diagnosis, what their greatest challenges are (or will be) when living gluten-free, etc.

To understand what challenges a person with celiac disease may be facing, check out the Getting Started Guide and other resources from the Celiac Program at Children’s National Medical Center.

 

5. “You should do _____, it worked for me”

Translation: “You obviously haven’t tried the right things”

Like “you should do yoga”, this is a false friend – the intention may be to help, but it misses the mark. It’s wonderful to hear how a therapy or practice that has helped you feel better. But at the moment it’s not about your journey, it’s about theirs.

Unless the person you’re addressing specifically asked for advice, comments like this can be less than helpful. They assume that the person has not heard of the practice before, that they aren’t doing everything they can to improve their health, and that they will have the same experience as you did.

Instead: “What are some things that have helped you feel better before?” “Is there anything new you’ve been wanting to try?” “Let me know if there’s anything I can do to help.”

 

6. “I think you should talk to a psychologist”

Translation: “I don’t believe you” “It’s all in your head”

Therapy is great. But this comment is dismissive and lacking in empathy, implying that what they’re dealing with is purely psychosomatic. It’s along the lines of the “You’re probably just stressed” or “Do some yoga.”

Instead: “That has to be frustrating” “I hope you find out what’s wrong” “How can I best support you?”

 

7. “Are you sure you can’t eat that?”

Translation: “I don’t trust you.” “

If someone tells you they cannot have cheese, for example, and your response is “are you sure?” that signals a problem. Think about the root of why you’re asking that. Maybe you don’t understand their food restrictions or you’re uncomfortable in some way. It could even mean that there are feelings of insecurity bubbling beneath the surface.

It may be tough to watch your friend or family member dig into a big salad while you chow down on pizza, or eat their own “special” cookies instead of your famous homemade treats. You may view their refusal to eat “normal” food or “unhealthy” food as an attack on your own eating habits. In reality, what they eat has nothing to do with you – it is not a judgement of your choices, nor a rejection of your hard work and talent in the kitchen.

If they tell you no, it means no. Keep in mind that there is much you do not know about their health situation. Trust that they know what’s best for them and their body.

Instead: “I’m happy you’re here!” “I’d love to know more about your diet if you feel like sharing”

 

8. “But you don’t look sick”

Translation: “You’re faking it” “I don’t believe you” “You’re a hypochondriac” “There’s nothing wrong with you”

If you notice yourself even thinking this in response to, say, a coworker leaving early because of their autoimmune disease, take a step back. Try to think about times when you haven’t felt well and no one could tell. Should you have to prove to everyone around you that you have a headache in order to make it true, to validate the pain you’re feeling?

What we see on the outside never tells the full story.

Instead: “Let me know if you need anything” or “I’d like to better understand what you’re going through. I’m here to listen if you’d ever like to share”

The Bottom Line

Much of the time, what people are looking for when they talk about a challenge in their health journey, is compassion. Not pity, not solutions, not unsolicited advice, and especially not judgement – just a listening ear, maybe a hug, or an “I believe you” or “I’m here for you.” If they want your opinion or suggestions, they’ll ask!

To better understand your friends or family members who have chronic illnesses, check out personal Autoimmune Stories describing what it’s like to live with these conditions on a daily basis.

Another great way to get a clearer picture of what it’s like to have a lifelong health condition, is encouraging your friends and family members to share their experiences. This helps to raise awareness, by adding more voices into the greater conversation about autoimmune disease. They can express themselves using journal prompts, share their thoughts on social media, and submit their stories to the Global Autoimmune Institute through the Get Involved page or sending GAI a DM on Instagram.