The Honest Answer I've Started Giving to People Who Ask How I'm Feeling

How often do you get the question, “How are you feeling?”

When living with a chronic illness it feels like a daily occurrence, and it can be a difficult question to answer. My first unspoken response is always, “Compared to when?” because compared to my sickest, I feel great; compared to yesterday, I feel terrible; and however I feel today doesn’t necessarily have any bearing on how I may feel tomorrow.

Once a friend of mine who has the same congenital heart defect I have asked me how I was feeling. I said I was feeling good. I had just been discharged from the hospital and was having ventricular tachycardia, which required me to wear a defibrillator vest, which meant I could no longer drive and my open heart surgery was now urgent. She laughed, because she knew that in our world we say “good” when most people would be in pure breakdown mode. But it was an honest answer.

When you live with a chronic illness, your definition of “good” is totally different from those who are healthy. Those who have good health often have a hard time comprehending what it means that we will never be better and probably be sicker in the future, because they get sick and get better. I don’t blame them. It is hard for anyone to have empathy for someone whom you cannot relate to at some level. But if we don’t tell  them the truth they most certainly will never know.

Sometimes saying “good,” “great” or “better” gives the person asking some false sense of comfort and does nothing to express how you really feel. Sometimes that is just fine and we need not share more. But what about the times when those responses don’t even come close to how we feel and the person asking is someone we want to be truthful with? How do you initiate the proper response under those conditions? It is natural to use a one-word answer which has led me to learn a new response — “Sh*tty!”

It comes out naturally, it is not complicated, and there is usually little angst in saying it because it is so simple. At a minimum I am telling the truth. Uttering those words have helped me initiate some of the most difficult conversations of my life. It usually garners the full attention of whoever asked, and sometimes nothing more needs to be said — just know I feel sh*tty today.

We cannot always hide behind being “good,” “great” or “better.” I believe sometimes we need to be truthful. For me I find truth in those two syllables, more truth often than any other two syllables I could think of. Maybe you have a word that rolls off your tongue easier. If so, find it! Don’t always hide behind the optimistic one-word responses. Instead I recommend finding the simple true response that you really need to say. Speak the truth to those that you trust. I believe it can open communication, cultivate empathy and take away some of the isolation we can feel when living with a chronic illness.

The Mighty is asking the following: Coin a term to describe a symptom, characteristic, aspect, etc., of your diagnosis. Then, explain what that experience feels like for you. Check out our Submit a Story page for more about our submission guidelines.

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