What to do with a problem we can't solve?

The power of being seen and the will to understand uncertainty with Meghan O'Rourke

“I have become a creature of the moment. Relish the present, because the present is what matters.”

This interview is really dear to my heart. Meghan’s book, The Invisible Kingdom was calling me from countless bestseller lists over the past few months. It is beautifully written, deeply personal (Meghan is a poet who has experienced ambiguous medical symptoms), and most importantly opens up the need that each of us has to be seen and believed. For people to trust us that our pain is real.

All of my life, I have gone to doctors to fix things. I got tested, took the antibiotics, and got better. If not, the problem was forgotten. I have been lucky. The relief offered in these visits by a clear diagnosis is astounding – doctors would use quantifiable methods to validate that something was, in fact, going on. But what happens when we cannot completely explain our symptoms? Or we extend past the tools of measure we have in Western medicine to understand and see the whole picture of what we call “Health”? We are in a moment where the complexities of health, individual, societal, and species interdependence are starting to be explored in profound ways. This time of re-evaluating the interconnectedness and complexity has amazing unknowable possibilities, but also uncertainty.

I was attracted to Meghan’s book because I didn’t know how to deal with the idea that we would be living with chronic illness, terminal illness (this is a funny term, isn’t life terminal?) for the past 3 years after our daughter’s diagnosis of Cystic Fibrosis (May is also Cystic Fibrosis awareness month. This was not planned.). Naively, I thought illness was like a detective novel, that the information was knowable and the case could be solved. Life would go back to normal. This is a myth that never actually existed, but one that to this day gives me great comfort.

So what happens when there is not a clear path forward? How do we live with chronic pain and uncertainty? The Invisible Kingdom is Meghan’s story, and a snapshot of the medical system’s limitations at this moment. There is something in her story that points at the basic human nature to be seen and to feel like we are not alone, that she uncovers as powerful aides in day-to-day existence.

Meghan O'Rourke is a writer, poet, and editor. She is the author of the New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness (2022) and editor of The Yale Review, where she also teaches.

A few things, that I really am still thinking about after the book are:

1. Our propensity to diagnose issues that doctors don’t understand as stress-related or mental, as if our minds and bodies were not interconnected. Upon reflecting, there have been countless times I have been to the doctor, more often than not when there is not a clear solution, my medical professional has looked over at me and asked, “Are you stressed? Maybe this is all in your head?” (This is not to say we shouldn’t take mental illness seriously, but more to not blame everything that cannot yet be explained on it.) Resist the impulse to psychologize impulses that we don’t understand. 

2. I had never heard the term, The Wisdom Narrative. Meghan recounts a time at her sickest where a friend told her, “Well, think about all that your illness has taught you.” To be honest, she would have rather not have had to learn any of it this way. I would not either.

3. Medical Gaslighting. Come to think of it, about 50% of our population spend a week every month suffering through painful and uncomfortable symptoms that often goes unacknowledged or brushed off, just because many of the other 50% of our population cannot experience the same symptoms and have no way of quantifying it.

4. Seeing the immune system not as a static protective force, but as an ever-evolving record of your exposures and genetic predispositions. Learning and adapting from experience.

5. Reframing illness as not your fault. Not something you did. But these diseases are telling us something about our culture. Something about our collective well-being is in jeopardy that is out of reach of areas of perception at the moment.

6. Meghan offers up a way to think about wellbeing as the acceptance that things are never going to get better but there will be moments when joy will be restored.

Meghan creates space for exploring the uncertainties of life with curiosity and acceptance with The Invisible Kingdom. It’s paradoxical but this is not a book about solutions, however, it offers them up as it bears witness to an unseen narrative. Which in light, feels like the most we can ask for besides a cure.

For all of you with bodies that are hurting in ways that are indescribable, let this book tell you that you are not alone. And there are people out there working to see you.

If you are dealing with medical uncertainties, this book will sit with you. Comment here if you are interested in a copy - we have two to give away!

Sending love to you, thanks for reading. I love doing substack and because you are here, it makes it possible. XO, Carissa