An Open Letter to the ‘How Are You Feeling?’ Folks

Dear “How are you feeling?” folks,

Those of us with a chronic illness hear repeatedly — and secretly dread — questions such as the following: “How are you feeling? How have you been doing? Are you feeling any better? Are you hanging in there?”

We try to smile and reply with our rehearsed responses.

Let me clarify: We do appreciate people checking up on us, but it can feel awkward. We realize that these questions come from a sincere place of love and concern for our well-being. We know that you are trying to be a good friend, family member, or co-worker. I can’t fault you for that; instead, I praise you for your kindness. So, I guess the discomfort stems from my not knowing how to respond to these questions. It’s one of those situations where it’s not you, it’s me — or more accurately, it’s cystic fibrosis (CF).

The thing is, I don’t know how I feel most of the time. My complex body and the associated symptoms often confuse me. I don’t think I am alone in this. With CF, our physical and mental states are continually shifting, breaking down, rebuilding, and adapting. We experience trade-offs of symptoms and continuous waves of discomfort followed by a lifting of the fog.

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In 12 hours, I can go from energized and functional to bedridden because of exhaustion and infection. I can lose lung function and weight so rapidly that it’s scary to even think about it. A worrisome symptom might fade or resolve just before another set of problems arises. I can become so used to living with pain and fatigue that I forget that it isn’t normal until I get better again. These are the nuances of living with CF that are inadequately covered by my hesitant response to your simple question.

My answers typically follow this format:

“I am doing fine. I am [daily symptom or challenge], but [express hope that the symptom resolves or acknowledge resolution of another issue].” This is how I leave crumbs about the reality of my disease and also express gratitude for the good health I have. Is it the most authentic version of my experience? Probably not, but I’ve simplified it for you. If you ask me the same questions while slipping me some truth serum, my honest and un-sugarcoated answer would likely be: “I don’t know.”

I don’t know how I am feeling because I am as confused as you are about the “living with a chronic illness” thing. However, please keep asking me; don’t stop checking in because hopefully one day I’ll announce, “I feel great!” and truly mean it. Until then, try to understand that my polite response can’t begin to summarize the reality and perplexity of living with CF. There is always more to the story.

Love,

“I don’t know.”

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Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.