Medical Distrust and the systems we rely on

I read a Substack article this morning, in the tub while drinking my coffee, written by a woman I’ve never met who underwent IVF by a doctor who is the new wife of Patrick Clancy.

Like most of the world, I found myself absorbed in the Lindsay Clancy trial as it unfolded. Not because I’m a particular true crime junkie but because I was horrified and all too familiar with the failings of the medical system.

Earlier this week I was sitting with another transplant recipient and we said the quiet part out loud: I don’t know if I trust the medical system.

It sounds like such an odd thing to say, having been “saved by modern medicine.” And yet, for me, it’s like one of those optical illusions where the closer I stand the more distrustful I become of the image as a whole.

As I read the article this morning, the way this woman spoke of IVF resonated with me, despite my never having experienced it myself.

She wrote of the trust involved in medicine. To submit your body to drugs you can’t feel working, to make decisions you don’t fully understand, to invest time and energy and money and everything else into a process with no guaranteed outcome.

I feel this. My own experience of medicine is similar. There are no guarantees. In the system and outside of it, people die. Safety is an illusion.

A lot of my therapy couch discussions as of late have asked the question if there are no guaranteed outcomes, can I accept responsibility for my choices and whatever outcome that follows? What am I ok with, and what am I not? What risks am I willing to accept?

I’ve been realizing more that the medical system at large operates on standards, and statistics. It’s a science, with little room for objectivity or nuance. And as someone who is very much not average, I notice the places I could fall through the gaps. I look at places where the care I received made me worse instead of better. Where the life saving treatment eroded my autonomy, and the consequences weren’t worth the end result.

And this system is one I’m being asked to give myself to again and again, because I have no other choice. Because for all the flaws I see in the system, I’d also be dead without it. It’s a double edged sword. Both and.

In the article, the writer talks about her following of the Clancy trial, and the attempt to understand mental health postpartum. She states that in the years she has spent in and will spend in the system, she wanted to know if there was a red flag, someone would meet her and notice. And this trial illuminates the reality that this might not be true.

My mind flashes back to ICU delirium, to immediate post transplant mental instability, and how I was told to just go home. The system I put blind faith in didn’t see the flags, or if they did they did nothing to stop it. And I felt utterly abandoned by the system that had created these symptoms in the first place.

I turned out ok, through every bit of my merit and with no help from the system that I was told was looking out for my best interest. But I hear stories daily from others who didn’t.

This is the part no one tells you.

I started the transplant journey afraid of what would happen if I didn’t receive a transplant. I never knew to be afraid of what would happen if I did.

I’ve been exploring what it looks like to be in a system you do not trust. These theme extends beyond medicine, but is noticed here most prominently.

What are the other options?

Or, perhaps more articulately, what risks am I prepared to take responsibility for? At the end of the day, what can I live with?

It’s a question where the answers are unique for everyone. I know people who say they’ve trusted the medical system this far, why stop now? I wonder what influences how we all arrive at our conclusions.

For a system that is for everyone (and I do believe healthcare is a universal right), not everyone is given the same treatment within the system. (Is anyone else following grey’s anatomy and the VIP floor storyline?)

And for those of us dependent on the system we do not trust, what are our options?

Where do we go next?