An Open Letter To Anyone Who Asks “How Are You” to Someone with a Chronic Illness


Dear people who don’t listen after they ask,


I know that we were taught as children to ask, “how are you?” I know that the inquiry has become an innocuous phrase— a polite, automatic way to follow greetings. I too, have been guilty of using “how are you’s” haphazardly. Maybe once in a while I even zoned out a little while someone answered me— you know, planned my grocery list instead of listening while they answered. But here’s the thing: it never really mattered because, as I’ve learned, you’re supposed to just say that you’re good. Why? Because most of us weren’t taught how to respond to other answers.


When I was first diagnosed with lupus, I used to take the time to answer honestly when friends, family, or acquaintances asked how I was. I would explain how sick I was with phrases like “I wake up in the morning like I ran a marathon, drank lots of tequila and got run over by a truck.” To explain how difficult my days are: “Well, I am usually balancing pain, fatigue and a rotary of illnesses all day, and my body feels like it’s burning, like someone is punching me and as if there are a thousand needles poking me.” And finally, how my life was changing because of the illness: “My baseline is that I’m sick all the time.  24/7.  And then, I’m frequently ill.”


I found that in most instances, I was wasting my breath.  Most people do not know how to respond to such stories.  They are uncomfortable, they cannot relate, and they cannot offer comfort. Time and time again, silence followed my narratives.


So here’s the thing. If you don’t really want to know how I’m doing, please think twice before you ask. I don’t expect you to ask, but choosing to ask implies that you will listen. I get that you can’t relate to the constant numbness in my feet and legs, or the fact that every step that I take feels like I am being pierced with broken glass. And you know what? I can’t relate to your excitement over your new high heels either. And maybe you’ve never had to make conversation with someone who’s bedridden— but I can still make conversation about your career problems even though I’ve been physically unable to work for four years.


So I know you think you’ll hurt my feelings if you don’t ask “how are you?” Or maybe you’re worried about a call from Miss Manners, or worse, your mother. But most of the time, if you ask me, the answer is going to be that I feel like the walking dead, or that I can’t remember what it felt like to have fully functioning taste buds. This is how I’m actually doing these days. If you’re just going to stare at me wide-eyed, perhaps it’s better for both of us if we stick to current events.


Your Frustrated Lupie Friend

Want more? Read “He said ‘But you look fine.’ What I wish I had said”  


Learn more about Lupus with The Lupus Encyclopedia: A Comprehensive Guide for Patients and Families and find out about easy and delicious Lupus friendly recipes on Beat Lupus Naturally: 49 easy and delicious Lupus friendly recipes.


Note: PLEASE consult with  your doctor before making any changes to your diet or medications. The material on this site is provided for educational purposes only, and is not to be used for medical advice, diagnosis or treatment.

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8 thoughts on “An Open Letter To Anyone Who Asks “How Are You” to Someone with a Chronic Illness

  1. weilasmith

    my mom who dealt with stage 4 metastatic breast cancer for years would just answer ‘hangin in there’. she always had grace and dignity, no matter what. she is teaching the angels now.

  2. Kat

    I am also living with chronic health challenges- pain,
    immobility, crushing fatigue… BUT sorry, I cannot agree
    with the spirit of this article.
    Saying “how are you?” is most times just a spontaneous
    greeting of politeness in our culture. Most don’t really want
    to hear a list of what ails you. What are they supposed to say to it anyway?
    What type of response would satisfy you? AND if they are close enough to you
    anyway, then they already know what you deal with. If not, then who cares?
    Yes, you are right, most people DON’T know what to say. They are
    not responsible for your illness. Why do you want to make them feel
    Frankly, with the isolation and depression that goes along with
    chronic illnesses, I am thrilled if I even see anyone I know – period! Next
    time, if they spot you they may try to dodge you…
    How about, you carry a current list of a few things that are happening in your life, BESIDES your current symptoms? Can’t think of anything?…THAT may be the real problem!
    You write, “I can’t relate to your excitement over your new high heels either”… So, now whatever they say has to be filtered through your illness??
    Don’t resent others because your world has become narrowed or restricted in some ways.
    What you suggest here is that people have to be extra careful and extra inquisitive when greeting you because – you live with a chronic illness! Kind of like you are more special than most…
    Well, lots of people have their own burdens and troubles too- even things no one knows about.
    How about if you not project your palpable anger and frustration, onto others who are at the least, just trying to acknowledge you in the first place…it’s a turn off.

    1. QM

      Thank you!!!
      I too, have chronic pain. I’ve also suffered from relentless poverty (despite working!) ~ and had to “enjoy” endless vacation stories, congratulate friends for decades on new homes, new cars, new furniture, new clothes, new children (I wasn’t able to have children) and all the many other rewards of their having been born into a higher economic class for starters, and simple better fortune in life as well. I get slightly jealous when someone can actually go to the dentist! (Something I haven’t been able to afford in years.)

      But you know what? I meant those congratulations. I’m glad my friends are getting things they want ~ they are my friends!

      Sure I wish many more people would inquire or understand my perspective. Some do, of course. Most don’t. And many acquaintances are simply oblivious, wrapped up in their own difficulties, like Ms. Cho.

      And that’s what *I’ve* learned: We ALL have pain. Sometimes it’s relationships, sometimes it’s physical, sometimes it’s financial, many times it’s a combination. Some have it worse than others. But by actually sharing compassion for their *joys* we can, when the time comes, also find some who will quietly squeeze our hand in shared humanity.

      That’s about as good as it gets. No one said it was easy.

  3. AmyE04

    Many years ago I decided to respond with, “I’m doing”. Usually people don’t probe further. If they really wanted to know they would, but they rarely do. It gets me off the hook of lying and saying, “I’m fine” when I’m not. On my really bad days I’ll answer, “I’m trying to hang in there”.

  4. Cindy Martin Sisk

    Unless it’s a close friend that’s asking…someone who actually KNOWS what’s going on with me, I will always answer “fine, thanks”. Some will smile gratefully that they aren’t subjected to a litany of my ills; others will look me in the eye and repeat: “No. Really. How are you doing?” These are the people you can talk freely with. But my illness doesn’t define me. I don’t want every conversation to be about it. I’d rather tell you about my grandchildren or my dog or my church or the thousands of other things in my life that bring me joy and take me (even if it’s a struggle sometimes), away from the constancy of tests, treatments and fear that is threatening to take over my life. I can’t change this. But I can change how I respond to it, and I can most certainly change how people view me. Am I the victim or the victor?

  5. esthersiebert

    I can think of responses but lately I’m wondering about what we really want people to say, what are we looking for from the well-meaning people who ask and wait to listen? Do I really want to make them sad and have them look at me with pity? I feel worse when they do. I really don’t know what if anything they could say that would make me feel good or supported…maybe if they just said sincerely, “I’m sorry you’re sick,” that would do it.