Three things you shouldn’t say to someone with chronic illness

This is a recent MRI of my lumbar spine. Can you spot the two bad discs?
This is a recent MRI of my lumbar spine. Can you spot the two bad discs? OUCH.

When I read the story about a Danish woman with multiple sclerosis who ran 366 marathons in one year — yes, one marathon every day for 364 days, and then two marathons on the 365th day — I wanted to hurl my computer against the wall, and not just because I’m jealous of her amazing feat.

“I can choose to be, ‘Oh, tell everybody I’m not feeling so well,’ or I can tell myself, ‘No, I want to feel good and tell everybody I’m feeling good.’ It’s my choice. That’s kind of a freedom,” the runner says on CNN.

Negative Nelly alert

I think this case is an extremely unusual one. Most of the time, it’s just not true that wanting to feel good and telling others you feel good when you don’t feel good will free you from your illness.

I understand the need to deny or conceal your medical condition(s). I do it every day.  Some of my doctors are surprised that I work instead of claiming disability for a slew of major health problems. But I love my work, and on most days, I find that You can do it is a better internal mantra than damn I need to get in bed and rest until someone brings me dinner.

But I also need days when it’s safe to acknowledge how tough things are — the days when it’s hard to walk, or when tears hotter than the water pour down my cheeks in the shower, because it’s the only time when nobody else can see me or call me on the phone, and something just slips.

Unfortunately, that safe space can be hard to come by, because it means finding people who are willing to see the pain when they see me, without retreating into fear, pity, contempt, platitudes, or unsolicited advice. In other words, just like cutting the high fructose corn syrup is as important to your diet as eating vegetables, pinpointing the things we don’t need is as necessary as focusing on what we do need.

My unsolicited advice for you

So this is a short and potentially painful, inflammatory list of things not to say to me, a person with a chronic illness.

  • “How do you think this makes me feel?”

This should be saved for when someone healthy is behaving in a cruel, disrespectful, or irresponsible way. It should not be used when a sick person is struggling. A truly debilitating illness, including a mood or mental disorder, causes stress to everyone who loves the sufferer, and the sufferer is very aware of that, even though he or she is no saint.

There may be other people in your life who can be an appropriate ear for the legitimate stress and pain you feel when someone you love is sick, especially when that illness is a lifelong slog, not the flu or appendicitis.

The plain truth is that sometimes, I just can’t handle your stress about my illness on top of my own stress about my illness. I apologize. But it effing sucks to feel sick all the time, and I’m not the emotional reincarnation of Hercules.

  • “Have you tried the [nutritional fad] diet?”

Most of the time, I’m willing to give you a pass on this one, because you have the best intentions. But here’s the thing. If I have been diagnosed with a life-altering and lifelong illness, I’m probably under the care of medical specialists, and a proper diet is already a component of the plan to manage that illness. I appreciate your desire to help, but don’t need diet tips from every corner.

My own diet, to manage problems like migraines, fibromyalgia, and interstitial cystitis, is already restrictive enough to affect every meal. I have spent over a decade on my own mission to track what foods and beverages work for my body.

Plus, I bet you a million dollars that Häagen-Dazs isn’t in whatever diet you saw featured on the raw/gluten-free/paleo/macrobiotic/probiotic/vegan recipe book table at Whole Foods this month. And if you wanna take away my ice cream on a rock-bottom shitty day, what’s left?

So remember, I’m already on a strict diet; stick to your own diet, and zip it, unless you are very, very familiar with my illness, and I ask for your advice.

  • “You’re too young for this!”

This one is the real topper, because I hear it all the time, from friends, family, colleagues, and even doctors.


It’s hard to even list all the reasons this comment makes me feel like crap, but I’ll try.

Yes, I do have some problems that are more common in elderly people than in people just shy of their 31st birthday. But remember — just because something is true does not mean it is appropriate to blurt it out over lunch.

I understand that you’re trying to say something sympathetic and I appreciate that, but really, how is this comment helpful? All it does is remind me of how debilitated I am. Part of the struggle of chronic illness for young people is that our bodies are indeed failing us in ways they ordinarily wouldn’t at this age. (If you dread aging in a healthy body, how do you think it feels when serious pain or limited mobility sets in before age 30, when everyone else is hiking and biking and birthing one cherub after another?)

Also, you may be dead wrong when you say “you’re too young for this.” Yes, pain and debility are usually associated with aging, but in many cases, a chronic illness is a matter of our genes, not our age. If I have the illness, I have the illness, and it doesn’t wait politely to strike until after I’m eligible for Medicare.

Think of adults with attention deficit disorder, something often associated with children. When the adult ADD sufferer has trouble focusing, would you exclaim, “You’re too old for this”? No? Then don’t pass audible judgment on how an illness relates to someone’s age. It’s not comforting and it’s not a compliment.

Beyond positive thinking

This blog post may just be one long example of why I am not as good a person as the Danish marathon runner. But it’s my truth. And it’s ok if you officially do not want to hang out with me, or read my essays.

I can understand the kind of positive thinking that allows a person with multiple sclerosis to run over 26 miles a day. It’s probably similar to what drives me to meet my deadlines and satisfy clients week after week. But positive thinking without an honest assessment of what really hurts — in our bodies and in what other people say — is like a hot air balloon without a basket. It floats uselessly away with nothing to let you get onboard and no way to ground yourself when necessary.

Do you have a chronic illness, or does someone in your life struggle with this? What are the comments that help or hurt you?

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  1. My list is long (chronically ill 20 years), but here are a few: “If you feel good enough to do X, you should be able to do Y”. No … because I did X, I’m even less likely to be able to do Y. “If you’re not up to it today, we can go some other time.” Please just go do it so I don’t feel guilty for keeping others from enjoying something, because if you wait around until I feel good enough, you may never get to do it and I don’t need that kind of pressure. I have enough to deal with. “Why don’t you exercise and build up your muscles so you don’t feel so weak?” Well, because that’s not how it works. At all. I’ll try not to go on forever, but the other one that gets me is when a family member or friend who’s been around me and my illness for over a decade hasn’t bothered to learn how to pronounce what I have any of the dozens of times I’ve said it, nor ever look up what I’m going through and asks, “How do you say that thing you have?” or “Spell it for me.” Google has this nifty function that will suggest what you may have meant if you get anywhere close to spelling it.

    • Wow, I feel you. A lot of good insights here. On doing X and Y, often my worst demon is my own self, pushing too hard to get something else done because I was able to be on my feet long enough to get one thing done. Also can relate to people who never learn to pronounce “interstitial cystitis.” Annoying when family or friends can’t grasp it, but hey, it’s a hard one. I’m content if they just keep some understanding of why I feel the way I do, because of the illness. Fortunately I have some very supportive family members who have made a great effort to research and understand the IC. But the worst are doctors and nurses who can’t or won’t say it. Really inspires great confidence in care when the provider can’t even pronounce your illness. Bingo also on the exercise dilemma. If I didn’t put my body at risk for awful flare-ups of pain, maybe I could go jogging or lift weights (as I tried to do many times in the past before I understood my diagnosis). My exercise right now needs to be gentle stretches and walking, which I stick to consistently, and no, I can’t force my body into something more strenuous by changing my attitude. Thanks for reading and sharing your experience!

  2. What, no marathons for you?? At the very least you could *walk* a marathon. I mean, just one every couple of weeks – come on…

    I don’t know how many times I’ve heard, “You’re too young for this!” about my back issues, especially during the 9 months I couldn’t walk for more than 1/2 a block without screaming in agony (I was 19). All there is to say to that comment is, “Clearly not.”

    Also LOVED the couple of times during those nine months when people harassed me for parking in a handicapped space (with a mirror tag from the doctor) and walking into the building. Little did the fuckers know that a) it hurt and b) I made straight for the nearest chair. And c) fuck off.

    Love you, Laina, and I say *screw* positive thinking if it makes us feel bad.

    • Sorry, no marathons, big shocker there. My spine is SO ready to pound the pavement.

      I completely, completely get the agony of being a young person whose back is in so much agony she can’t walk unaided. I’m sure it’s really hard to have a disability that’s visible, but it’s also hard to have an invisible one. If you don’t know me, I look like a healthy young woman taking up one of the handicapped seats at the front of the bus, but on a lot of days, I’m not able to walk any farther when the bus is moving.

      Just read a very interesting book about depression called “The Depths” — one thing it argues is that we set ourselves up for all kinds if inevitable grief if our goal is as nebulous as “happiness” or “positive thinking.” We’ll feel good when we can accomplish specific, realistic goals, not when we constantly lecture ourselves to “think positive.”

      Thanks as always for adding your voice.

  3. Articles like yours are a good thing, because they open the eyes (hopefully) of a few people, the foster understanding and ability to see things from another person’s point of view, and to remind us that just because something is new to US doesn’t necessarily mean it’s new to everyone else. Sometimes a gentle reminder of how long you’ve actually had your illness can go a long way to reminding someone this isn’t your first rodeo. At least, it does for me.

    I have a very dear friend with Fibro, and she’s young, beautiful, and often in some serious pain. It breaks my heart to see her suffering, and there are times that I’m sure I’ve said some stupid things to her (although I try hard not to). In time, even though I still feel so helpless in the face of her suffering, I’ve learned to simply say ‘This really sucks’ and do what I can to make things easier on her when I’m with her on a bad day.

    I’m a ‘fixer’, so all I want to do is help someone/something I see in pain, because physical suffering of another elicits an emotional suffering in myself, but if you have a friend or loved one who is dealing with a chronic illness, eventually, you realize that your suffering is no match to theirs, and you learn to deal with it, just like they have to deal with theirs.

    • Thanks for adding your perspective. It is true that a lot of well-meaning folks who offer advice when you’re not feeling well might not know that you have been coping with this for many years with many doctors, and know the drill.

      Everybody says dumb things sometimes. When someone says something dumb to me about my illness, I try to keep in mind that they are experiencing a kind of suffering if they can see me suffering, and they may say things that are consciously or unconsciously about relieving their own pain as much as relieving mine. It’s a natural response. And on the other hand, it’s true that just agreeing life is hard and hearing out the chronically ill person or asking what he/she needs is the best thing you can do.

      I feel like there are so many levels of suffering — my suffering from the pain, my family and friends’ suffering b/c they see me hurting, and then emotional pain for me, knowing that I’m putting others through a difficult experience b/c of my illness. Ugh.

      • For me, even knowing I can’t help her, I feel like if I don’t acknowledge my friend’s pain when she’s having a bad day, that she’ll see me as an inconsiderate ass. I never ever ever want her to think I don’t CARE, and seeing her in pain, and ‘acting’ like I don’t notice makes me worry she’ll think I’m callous or indifferent to it.

        Thank you for this, the article, your reply… it’s really gotten me to thinking about my friend. The next time I’m with her, I think I’m going to have an open conversation about what she needs from me on the bad days, and what she DOESN’T need from me, so we can both be a little more at ease, mentally at least.

      • I’m sending my best wishes and empathy to your friend.

        As a fibro sufferer myself, I can say that I don’t usually hold it against someone if they don’t acknowledge my pain — most of the time, I am trying desperately to hide it, and am very pleased if I can convince everyone I’m fine. Also, when folks know you’re in a health struggle, they can tend to ask you about it a lot, in a natural friendly gesture, but it can get tiring to talk about over and over, so I often (politely) change the subject. And if someone doesn’t ask me about it, I don’t assume that they don’t care. I just feel like they’re interacting w/ me as a person, not a Sick Person.

        I hope you can have a great conversation with your friend. If she wants to read this essay, her perspective is welcome too.

      • Thanks 🙂 She really does try to hide it, but some days that’s not possible. She’s one of the strongest people I know.

  4. Eleanor Jean Dillard July 18, 2014 — 7:29 pm

    Thank you, Alaina. I think it’s nigh on to impossible for someone without chronic illness to have any concept of how it is for someone with a debilitating condition. It would be wonderful if our society would come up with ways to express true compassion. As it is we teach the importance of staying young and vibrant no matter our age or condition, which makes outcasts of many with physical and mental disabilities.

    I appreciate your ability to express your frustration with those of us who blithely throw out the first thought that comes to mind. Would that we were as concerned about your comfort level as we are about our own. I hope that my awakened consciousness will last a while.


    • Thanks Eleanor, glad you found the piece worthwhile. I agree we all need more practice in compassion.

      I also agree it’s pretty darn hard to understand what it’s like to live in a chronically ill body if you’ve got a healthy one — even if you’re a medical specialist. I guess you could say to others, depending on your illness, imagine how you felt the last time you had Lyme disease, or a UTI, or the aches from the flu, or pulled a muscle in your back, or had a stomachache, and imagine that it wasn’t temporary, and you had to live with that pain every day for your entire life.

  5. If I say something to you, I might be trying to build or mould our relationship.

    Sometimes compliments can feel as if the other is commenting on my particular idiosyncrasy and overcompensating. Sometimes I smile and thank them, sometimes I get embarrassed, and beforehand I would not be sure which.

    • My general rule is that if I think someone means what they say to be a compliment, I’ll accept it as such in my behavior — even if I’m annoyed, there’s no sense in being mean when someone is trying to be nice, however misguided they are. If they make a lot of repeatedly clueless comments, I just limit the amount of time I spend with them.

  6. Oh, and-

    You’re too young for this. By which I mean no-one should have to suffer like that and I’m sorry that you do and wish that you didn’t and want to express sympathy and don’t know what to say and

  7. I think I’ve mentioned this on your blog before- I had adenomyosis, which typically affects women ten years older than me who have had kids. I went to several doctors before it was even mentioned to me, let alone diagnosed, and it’s hard to have a problem that is totally invisible, doesn’t affect me all the time, and most people haven’t heard of. I am usually fairly active, I go to work, but my periods are often very long and heavy, and it get pain all over my body during them. I also have IBS and have several foods I don’t eat because I’m trying to avoid triggers.

    I hate having people ask me why I avoid meat and gluten in an accusative tone, like I’m an idiot to be doing that. They often don’t know my medical history, but even so, what business is it of theirs? Yes I get plenty of protein, possibly more than they do. Honestly, unless you know everything that I eat every day, why would you try to tell me what I should be eating?

    • I do remember the adenomyosis saga, and I’m really sorry you’re coping with that. I can relate to an illness that goes haywire during your period. There is so little understanding for those problems, so it’s rough.

      I wonder what’s more annoying — people telling you what you should’t eat, or impugning what you do eat? Very true that it’s not their business. I do think America is full of people who make up faux food sensitivities based on which fad diet is ruling the airwaves, and that this does make life harder for people with actual illnesses who actually will suffer if they eat the wrong food, but I would never make negative comments to other individuals about what’s on their plate. Not. My. Business. And maybe they do have an “invisible” illness, like mine.

      Thanks for reading and sharing your experience.

      • I agree. It’s not my business why someone else is avoiding wheat, or dairy, or potatoes, or whatever. It’s possible they don’t have a real problem, but if they feel better, what’s it to me? I haven’t actually been diagnosed as celiac myself, but I find that wheat makes me feel heavy and otherwise gives me problems. I think it relates to IBS, but either way, I choose to avoid it. If I’m stupid for doing so, then I guess people can just silently judge me.

        And I think it is just an ongoing problem that no one understands women’s health, unfortunately one that is causing a lot of problems politically in this country.

      • Yeah, sometimes I think a lot of people would rather walk over coals than learn two or three true facts about the female reproductive system and modern reproductive care.

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