Don't be surprised when it happens to you

How health care continues to disappoint when it comes to putting you first

I had been looking forward to this soccer game all week. It was the annual kids vs. parents game, and while stakes were not high, there was pride on the line. For people like me who happen to be just a bit competitive, everything from my socks to my shorts had to be top notch. I purchased all the necessary regalia to really shine in this game. I was ready.

It was an epic game. Forty somethings vs. 8-10 year old kids. We had the advantage, or so I thought! At one particularly important possession, I ran up to a player on the opposing team, jumped, and landed on my right leg awkwardly. I heard a “pop” and immediately went down. I laughed it off, got a sub, and scooched myself off the field. My leg was numb, and my first thought was “Oh no, I broke my leg.” Of course, I hadn’t, but the numbness was concerning as was the “pop.”

I gave myself a minute, stretched, and got back in the game. Running, immediately I knew something was wrong. I had no lateral stability, and felt I was going to fall at any point. I didn’t, ended up scoring another goal, and then carefully walked to my car to process what had happened. My little one was just excited to have had a game vs. her dad despite the parents winning (only by 1 goal!).

The next morning, I went to a walk in sports medicine clinic, got an x-ray, was told nothing was broken, and then was referred to an MRI the next day. Twenty four hours later, I am in a frigid room, being told not to move, while the loudest MRI in the world banged and clanged around my leg. It was a Thursday evening so I didn’t expect the tech’s comments that the radiologist would read it that night were accurate, but alas, I hoped for the best as I really wanted to know how bad things were.

An MRI of some random person’s knee. I would put mine here but I have never seen it.

Fast forward to the next day. I call the sports medicine clinic to see if the results were in - they were not. They told me they were waiting on the radiologist to do the reading, and I should call the imaging facility to see if they could give me an update. So I did. I called imaging, they told me that it would occur later that afternoon (a Friday). Never mind that my sports medicine clinic closed at 12 PM and neither place worked over the weekend meaning I had to go another three days before knowing how extensive my injury was (or what I could/should do).

Ok, let me pause this story for a second. If you have been reading this Substack for a while, you may know where this is headed. If you are new, welcome, and hang on tight. I want to use this very simple encounter, my encounter, with the health care system as a “paint by numbers” opportunity on where we can do so much better to put people first. I also want to caveat that there are horrendous and much more egregious stories out there that I could use, but this one was close to home and recent.

I call first thing Monday morning to see if the results had come in - left a message - and got a call back later that day. Yes, in fact, the results were in and the orthopedics doctor would like to see you on Thursday. Literally, this is the conversation I had:

Me: “So, what did it show?”

Nurse: “Well, it looks like its not your ACL so we think meniscus.”

Me: “How bad is it? What level tear? Any advice on what I can or can’t do?”

Nurse: “I think the doctor will talk to you about that on Thursday.”

Me: “Can you read me what the scan says?”

Nurse: “Internal derangement of right knee.”

Me: “That’s it? ”

Nurse: “That’s it though I am sure the doctor will tell you more.”

And like that, I had information but still knew nothing. I was told yet again to wait for someone to tell me what was going on while I just wait in limbo relying on friends who are experts and whatever google tells me to do.

There’s a lot here to unpack, so let me lift up the dominant themes I see and how I know these play out every day with countless who interact with the health care system.

It’s not about your schedule: It’s hard to take time off work, repeat the same story over and over again, and still not feel as if all the people you are talking to are connected. Even when I needed to know on a Friday the status of my knee for activities over the weekend, there was no one there to help. The schedule of the various providers dictated when I was allowed to learn more.

Redundancies and inefficiencies: It seemed that for every new item I needed, there was another step to take, another provider to see or place to go. We complain about this a lot in the mental health field as it feels as if we hop from office to office sharing the same story everywhere we go and getting nothing we need from it. Between the three different office visits, I had to pay three different co-pays. While this is part of the health insurance game, part of me felt that I really only needed one of these visits to get the information I needed. For those who have high deductibles or even worse, no insurance, I can’t imagine how the bills would build up.

Lack of transparency of my information: From the beginning this was about my knee, yet there seemed to be an unwillingness to share the information directly with me. Even in my online patient portal, it had no images and only one sentence about the status of my scans. Why not give me more info? Should I really need to schedule an entirely separate visit just to get that information? It felt opaque at best.

How many new providers can I meet?: I literally met three new people in this journey, most of whom I will likely never encounter again. Insert a small book here about why this is so disconcerting.

Friends, this is my knee. This is not a person in a mental health or addiction crisis. This is not a person who has been diagnosed with a life threatening illness. This is my knee. While I was worried, I had a supportive family, stable housing, health insurance, and every other advantage one would want to be in this situation, and knew that no matter what was going on, I would be able to get through it. I just can’t imagine the emotional and financial toll hopping around the health care system takes on a person who is in desperate need for help. I can’t imagine people who are not with my system of supports trying to get through.

At no point in this experience did I feel that I was ever the priority. I had to initiate all the calls to find out more information. I had to be the one asking my people, my providers to talk to each other. For a system that spends as much as ours does, one would hope that things would be just more user friendly, but alas, they were not. I was not at the middle of this system, and that’s by design.

What’s the solution to all of this you may ask? Well, that’s an entirely different Substack and one worthy of writing. We hear language about how to change health care to make it more patient-centric, but the small things, like my knee, just highlight how far we have to go to make this a reality.