1. “I hope you feel better soon” or “I hope you’re feeling well.”
I never feel well. Ever. I always feel really ill and in lots of pain. Often things like chest infections or the flu come on top of my usual health shenanigans and these shorter-term things eventually go, but the symptoms from my chronic conditions are always severe and won’t get better soon. I hope they will someday, but not soon.
When someone says they hope I feel better soon or hope I’m well, I feel a sharp stabbing pain of loneliness and disconnect because they clearly don’t understand my situation. I know people say it meaning well, with love and care intended, but it has the opposite effect. It brings disconnection instead of connection.
What to say instead: “I’m really sorry to hear that. Sending you love.”
2. “No one can do everything they want to do; everyone has limitations.”
This is one of the hardest things to hear. Living with chronic illness and the limitations that come with it is completely different from regular human limitations, like lack of time in the day to do everything you want to do. Severe chronic illness affects your ability to do the basics you need to survive, let alone things you feel joyful about. Having to choose between all the cool things you want to do in the day because you don’t have enough time is completely different to having to pick the one cool thing you want to do in the week, because you’ll spend the rest of the week recovering from it.
What to say instead: “You’re amazing that you cope in the way you do.”
3. “I have [insert mild chronic health issue here] so I do understand.”
I know people are saying this because they are trying to connect, but it does the opposite. If their illness doesn’t affect them in a similar way, if they can still work, exercise and leave the house regularly, they probably don’t understand. A severe chronic illness can seep into every aspect of your identity, psyche, soul and body, changing your life in every possible way.
What to say instead: just listen and realize your experience is very, very, different.
4. “Yeah, I’m tired too” or “My period was bad this month too.”
As someone who lives with endometriosis, when friends without endo talk to me like we experience the same kind of thing if they have a “bad” period, I feel so lonely. Endo is not just a bad period, and I wish my friends without endo knew that. Same goes for the fatigue — a “regular” person’s tiredness couldn’t be more different to chronic illness tiredness. Chronic fatigue is like someone has sucked the energy from every single cell in your body, and no amount of rest or sleep can ease it. And no, we can’t push through.
What to say instead: “I’m really sorry, that sucks. Thinking of you and sending love.”
5. “You’re so unreliable.”
I’ve been told this directly, and I’ve also been given sarcastic jokey comments about my unreliability, which are actually worse than someone being straight-up mean. I’m not unreliable, my health is. And it’s not funny when you joke about it, because it breaks my heart every single day.
What to say instead: “I understand if you can’t make it, but it would be lovely to have you there if you can.”
6. “You just need to be grateful, think positively and motivate yourself more.”
If I could motivate myself better, I would! If positive thinking could cure this s***, I’d do it. But it doesn’t. Sure, noticing the things I’m grateful for in my life helps me survive all this, but it doesn’t cure me of my chronic illness. I wish it was that simple!
I’d like to see any of my friends without chronic illness step into my shoes for a day and be able to cope in the ways I do. It takes so much strength and bravery to keep going every day with the intense collection of symptoms I have going on all the time. I’m not lacking in motivation, gratitude or positivity, I’m lacking in a healthy body.
What to say instead: “That sounds really hard, I don’t know how you do it.”
7. “I wish I had so much time to rest and be creative.”
I wish I had the capacity to work and bring in money! It’s easy to romanticize the idea of being at home all day, with nothing to do except basic chores and creativity from bed, but I hate it. People forget that I’m feeling ill and in pain constantly. I’m so grateful I’m eligible for financial support from the government, but I wish I was well enough to work.
What to say instead: “That must be really difficult, I’m sorry you’re experiencing this.”
8. “Have you tried…” or “My aunt’s cousin’s niece did this thing and is now better.”
Chances are I’ve tried it. Chances are you don’t know my complete health history and all the things I’ve tried before you suggest something. The only exception to this is if really close friends suggest something gently, knowing my situation and everything I’ve tried before — only then do I hear their suggestion as care and genuinely appreciate them taking time to engage in the conversation about my health.
What to say instead: “If there’s anything I can do to help, let me know.” Or say nothing!