How Are You?

“How are you?” This is a seemingly simple question I am asked often but one I never know quite how to answer. I can say how I am in that moment in time but I know that is not usually what is being asked. I also know that the answer people would love to hear is “I am doing great- feeling good post surgery and it’s definitely made a difference in my overall health.”

In truth, what they hear is - “I don’t know, I think I am doing OK.” Because the truth is as a daily coping strategy I purposefully do not pay close attention to how I am feeling. I don't like to give space or attention to feeling poorly or focus in on pain or discomfort as I prefer for my energy to go elsewhere.

Early in my diagnosis, like many rare disease patients, I was instructed to keep a symptom diary. I would have to recount what reactions took place each day, what I ate, what hurt, what I did so I could watch for any trends to know if I should do something differently in the future. Over time, I realized however, that this very purposeful mindfulness of my symptoms led me to feel more anxiety and feeling worse physically. Reading my life of problems back from each day felt upsetting and it was hard to believe change would ever be possible.

And so, many years ago I stopped tracking my symptoms and I found by ignoring them I no longer felt like a prisoner to my disease in such a major way each day. I now rarely pay attention to every small reaction, discomfort or weirdness I feel in a day. I expect to feel something each day and if it’s not crisis level than my normal is achieved.

And yet I still don’t feel like I can really answer with “I am doing great,” because am I? Does not being in a crisis mean I am doing well? Is my version of normal the best I can be? I hope not - I don’t want my “great” to still mean I eat five foods, or that I take steroids daily. I don’t want my forever normal to mean I am always restricted on what places I can visit based on triggers I will encounter.

I think it’s hard for me to say how I am doing because in my mind I am still trying to feel better and it is hard to balance feeling that with also saying I am doing well. Because I want to believe I can be even better than I am now.

I saw a doctor a few weeks ago who I last saw on FaceTime five days after my surgery. She was thrilled with the progress she observed though I still find hard to recognize. But it made me feel encouraged my efforts are working and motivated to continue to move forward.

But I also know new hurdles await and that this is a process that may never truly end. I will have good weeks and bad and easier days and harder ones and I will continue to wake up each morning hopeful that each day will mean I feel better than the last. And one day it may mean I can say with certainty - “I am feeling great.” But until then know that I am here and I am healing and I am grateful to see another day and always mindful of how precious they are, even the hard ones.