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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. Sincerely, 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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