The Do’s & Don’ts of Talking to Folks with a Chronic Illness

“You look so thin in that hospital gown!”

Psychology Today recently featured an interesting article about some common misconceptions of chronically ill people. The article was thoughtful and spot-on and I hope the author accomplishes her  goal of correcting these misconceptions in greater society. In the meantime I’m offering a follow-up guide – a list of what definitely not to say to people with a chronic illness. If you have a chronic illness and are bracing yourself for the barrage of unwelcome commentary headed your way at upcoming holiday parties do read on! 

DON’T:  “At least you don’t have cancer!”

You’d be surprised how many times people have said this one to me. First of all, yes, you’re right, at least I don’t have cancer. I am actually pretty damn happy about that. I’ve watched loved ones die of cancer and it is a horrific and heart-wrenching experience for all involved and I am acutely glad that I am not there. However, you do realize that you are diminishing the severity of my illness when you say that right? You’re probably trying to make me feel better and I appreciate your effort but this is not the way to go. Chronic illness refers to literally hundreds of diseases that can wreck a person’s life – the collateral damage of a life of pain and medical care is devastating. Even though I don’t have cancer I still wake up every day concerned about my ability to function, terrified about my long-term prognosis and paralyzed with fear about the possibility of being too ill to fulfill my life dreams. It is wildly inappropriate for you to attempt to find some bizarre silver-lining in the fact that at least whatever disease I am suffering from is not worse than some equally horrible disease that someone else is suffering from.

DO: Try for something honest like, “I don’t know much about your illness and I imagine its pretty awful, but for what its worth I’m glad its not a death sentence.” 

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DON’T: “If you’re so tired, why did you come?”

I get this one a lot as well. I get it at community events or at school drop-off and holiday parties. I am not sure what motivates people to say this. Perhaps they’re wondering why they came because they’re also secretly exhausted? People tend to project a lot of their own insecurities onto sick people – maybe that’s the motivator behind this statement? In any event, don’t ask sick people this question. I drag myself to events for a lot of different reasons. Because if I spend another day inside I’m going to go crazy; because I need to get dressed and put on makeup and feel ‘normal’ for a little while; because I need human social interaction; because my kids begged and cried for me to come and I could not stomach telling them ‘mommy’s not feeling well’ one more time. There are lots of reasons I do stuff even when I’m really too sick and too tired to do it.

DO: “It must have taken so much energy for you to come, it’s really great to see you!”

I ran into an administrator at my daughter’s school a few days after a big surgery. She’d known about the surgery and was pretty surprised to see that I was doing drop-off, at the sight of me she burst into tears and hugged me. I was so shocked by her response (we’re not close friends or anything) that I also burst into tears. As we stood there out on the sidewalk hugging she looked into my eyes and said, “I am just so happy to see you doing something so normal. I can’t imagine what it took for you to drop your daughter off today and I am just so inspired.” That was probably one of the most touching moments of connection and empathy I’ve ever experienced.

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DON’T: “So how are you?” (even though you totally don’t care)

If you don’t care, if you’re going to space out three words into the conversation, if your eyes are going to glaze over or your going to start reading emails or answering texts…just don’t ask! After interactions like this I go home kicking myself, that judgmental committee in my head chastising me for sharing some personal bit of information – for thinking they even cared! They hardly listened! I was lured in by the sweetness of their inquiry, the concern-laden voice, the thought that maybe they genuinely wanted to know – and then crushed. Okay I’m not usually this emotionally devastated, but still, it isn’t a great experience. Most people ask to be mildly polite (something I generally realize too late) or worse, they  ask because they are nosy or like to gossip.

DO: Be sincere and respectful of personal boundaries. Please consider not asking this question (no matter how genuine) if you don’t really have the time to listen to the answer because it’s probably a long one. Also – if you get the blow off (a tight smile and an “I’m fine”) you can ask one more time. If they still blow you off leave it alone and don’t be offended – not everyone wants to talk about it.

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DON’T: I can’t believe how much weight you’ve lost! You look so great!” (over and over and over)

I recently ran into a friend I hadn’t seen in a while. She is a close enough friend to have kept tabs on my health from a distance and I was excited to see her and reconnect. The last time we’d seen each other I was 80 lbs. heavier. Also, I was blind. She was floored by my weight loss and paid me lots of compliments. It was flattering at first but she kept bringing it up and it kind of got obnoxious after a while. Leaving all my opinions about the complicated world of women and weight loss aside it just felt like she was really missing the point. Most of my weight loss came from being very sick. Though I wasn’t happy being overweight and being thinner is technically healthier I don’t necessarily enjoy being praised for an incidental aside of serious illness. I know it can be a lifelong chllenge for some people to loose weight and I am not diminishing it – but it wasn’t mine. My great challenge was regaining my vision after going blind – and while those blood, sweat and tears weren’t earned on the gym floor but in surgical suites and clinical trials – it was still the hardest thing I’ve been through – and I am proud of it. People often lose weight when they’re ill – sometimes a lot of weight – and sometimes they look better than they did before (take a closer look though..sick people generally look sick if you’re paying close enough attention). Still, I have yet to meet someone who wouldn’t trade their chronic illness for a few pounds and I tend to think it’s never right to make an uninvited comment about someone’s appearance – this is not the exception to that rule.

DO: If you must say something make it positive and brief. If you know they’ll feel good about it (lovely makeup, a new scarf) then great! If you’re not sure – err on the side of caution.

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DON’T: “You are so strong!”

I do appreciate when people recognize that I’m fairly tough and the strength of character I’ve developed in facing my life’s challenges. But here’s the problem, first, of course I get that I appear “strong” to you – what did you expect? Did you expect to go crumbling to pieces at the merest mention of my illness? Did you expect that I would give up on life and lay down and die? I don’t tend to fall apart emotionally in public, most people don’t, but that doesn’t mean that I don’t feel pain or get sad and depressed. As a culture we tend to place a lot of value on being strong and we tend to think less of folks who appear weak or emotionally unstable in the face of hardship. I believe this is a huge disservice we do ourselves, not allowing ourselves to feel pain and weakness without judgement. I don’t feel that being strong is necessarily a virtue in the face of illness. I’d rather be praised for my resilience or my self-compassion. Second, I want my life to be normal – as normal as possible as much of the time as possible. I have dreams and goals and responsibilities and just because I’m sick doesn’t mean that I am giving those things up. Also, I have children – and I know that my attitude communicates important lessons so I actively choose to be the best version of myself.

DO: Praise your friend for an accomplishment or virtue they’d rather be praised for. I would love to be praised for my rock star mom skills or my awesome cooking or some past academic or professional accomplishment (like most stay-at-home-moms I love to be reminded that I used to be a professional) I’ve done lots of things I’m proud of – enduring this illness is just one of them.

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Here are a few honorable mentions to the list. Be sure to forward to your friends and family so they know what not to say! Did I strike a nerve? Did I miss something? Have anything to add? Let me know in the comments below and share your stories here and on our facebook page!

DON’T:  “You’re still sick?”
It’s called “chronic” for a reason.

DON’T: “Are you sure you really have  ___ ?”
Never challenge someone’s diagnosis unless you’re a medical professional or have genuine medical (evidence-based) advice. If you cannot hold back be sure to tread lightly and make sure your motivation is offering valuable medical information and not just satisfying your ego.

DON’T: “Have you tried {insert alternative treatment} …. ?”
See notes above. Same rules. If you’re forcing your treatment opinions on someone else you are being rude and probably a tad self righteous. Chronic health conditions are often incredibly medically complex and its doubtful you have all the necessary facts to offer informed suggestions. I don’t care how dedicated you are health crusade, the relevant question is – how dedicated are you to the friendship?

DON’T:  “I read that {coffee/nail polish/dish soap/New York/liberals] cause your disease”.
Also same rules as above. Unless (and sometimes even if) you’re a medical professional, chances are you don’t know anything about the illness. You should be humble enough to admit as much.

Related articles

• Chronic Illness = Chronic Disappearing Acts (healthintuition.wordpress.com)