The infamous question that always irks me

It's a safe bet this question will frustrate anyone with a chronic illness

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by Shalana Jordan |

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“How are you feeling?”

Just hearing that question releases a hot flash up my neck. My stomach drops, and before I know it, my eyes are rolling. That’s because I know I’ll respond with a lie.

I think most people with chronic illness are frequently asked that question. It happens to me at least once a day and lights a fire in me every time I hear it.

Asking someone how they’re feeling usually comes from a good place. The questioner might be worried about a loved one’s health; they might know the person has been struggling with an illness, and they’re probably genuinely concerned. But hearing it all the time is frustrating.

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From working mom to permanently disabled

Let’s go back to September 2020. My life completely changed when I nearly died of a rare disease called atypical hemolytic uremic syndrome. I spent nearly two months in the intensive care unit with hemolytic anemia, multiorgan failure, and permanent organ damage.

My body was put through a lot: surgeries, dialysis, plasmapheresis, 18 blood transfusions, immunizations, extreme muscle loss, and chemotherapy. Today, with a rare illness, permanent damage, and ongoing treatment, my life has a whole new set of challenges.

I have both good and bad days, but a good day for me is a bad day for a healthy person. My nearly nonexistent kidney function makes daily activities hard, and my liver and heart damage slow me down. My body isn’t the same as it was. I was an active, working mom before I got sick; now I’m permanently disabled.

My chemotherapy and the three hypertension medications I take are also hard on my body. Plus, I regularly suffer from postural orthostatic tachycardia syndrome as well as dips and spikes in blood pressure because of my medications. Additionally, I have extreme muscle and bone pain, hair loss, nausea, and fatigue.

My close friends and family see me suffer, but I always put on a strong face and act as though I’m fine. I’ve never liked being a negative person. I don’t even cry in front of my children because I don’t want them to worry or realize how sick I am. But when I speak with someone I haven’t seen in a few days, cue the question.

I sigh and take a deep breath. Planting a soft smile on my face, I lie through my teeth and say, “I’m good. I feel good.” Let’s be real: I don’t feel good. I feel like crap most of the day. It doesn’t matter how much I sleep, because I’ll still wake up tired. It doesn’t matter what medications I take, my bones, joints, and muscles will still ache and burn.

But I don’t want to share all of that negative talk. When I have the opportunity to catch up with friends or family, the last thing I want to talk about is how I feel. I want to hear good news, distractions, or anything that’s going on outside my little medical bubble. I live and breathe my illness, labs, doctor appointments, medical studies, and medications. So I don’t want to talk about them.

I can’t speak for everyone with a chronic illness, but I want distractions from the challenges I face every day. I had a life before my illness, with hobbies, activities, dating, gossip, independence, and so on. We can easily lose ourselves by getting wrapped up in our diseases and medical care. But we are complete human beings who exist outside of our disease.

Ask us more about ourselves or what we’re doing instead of “How are you feeling?” It makes a world of difference and helps me connect and engage more in conversations. It’s important to remember the individual who existed before the disease. My disease doesn’t define me, and illness shouldn’t define anyone.

Note: aHUS News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of aHUS News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to aHUS.


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