Two weeks to go before I have the first of two surgeries I’ve been putting off for nearly 20 years. My logical self knows that this is a very common, non-risky surgery, and that I will be happy with the results. Reading and driving will get exponentially easier. I get my nightlife back! Yay!

But try telling that to my emotional self.

For those of us who enjoy the opportunity to keep learning long past our school days, chronic conditions offer a unique opportunity, an opportunity we have no choice but to take, whether we want to or not. There is no such thing as knowing everything there is to know about your conditions because, first, no two patient conditions are the same, and second, they keep changing based on things like age and lifestyle.

By intimacy, I mean the kind you have with family and close friends. They are a patient’s support system, sometimes as much or more than a significant other.

My childhood as a patient did me no favors when it comes to being comfortable with letting other people really see me. All of those physical challenges came with mental hits, and I hid everything because head down and focused on survival was the only way to, well, survive. Being judged or hurt or rejected – which did happen – had to take a back seat, so I spared no time to deal with them.

By the time my mom died when I was 24, I was closed tighter than my hermetically sealed apartment windows.

What do I mean by that?

If you know my story at all, you have probably heard that I have cataracts. They are a result of the high doses of steroids I had to take to treat and recover from meningitis when I was six. They were diagnosed ten years later by my ophthalmologist, who was a family friend. He actually didn’t tell me. I had to hear it from my godmother. Again, if you know me, you know how angry I was even then. But that’s a different story.

Most people who have cataracts have surgery fairly quickly to replace the affected lenses. My dad had surgery years ago, even though he was diagnosed a lot more recently, but I have been stubborn. Shocker, right?

I have a lot of insurance policies – homeowner, car, very valuable property for my mom’s jewelry, and of course, health insurance.  And then there’s the long-term care policy (LTC). This year, only a month into 2024, there have been so many SNAFUs that I still might lose coverage.

I have all of my insurance on autopay through my bank. I thought it would make it easier and require less attention than paying every month. That’s not really true.

In my time as a patient advocate, I have come to realize that a lack of trust between parties – clinicians, hospitals, insurance companies, patients, etc. – is the root of a majority of the problems and roadblocks within the system that we currently have no choice but to deal with. On the patient side, that stems from the fact that, based on their policies, it’s hard for us to believe that our well-being is a priority for the rest of the stakeholders.

Case in point:

I have a friend. She recently had a beautiful, healthy baby girl – such a little blessing.

My friend’s first baby was fairly drama-free but, when we caught up recently, she told me that this time around was anything but. One particular episode stood out to me.

Judy was one of the ones I lost last year. More than a friend, she was like an aunt or a surrogate parent.  I spent weeks at her family’s house in the summers when both my mother and I needed a break from each other. Her husband was my dad’s best friend, and her boys are like the older brothers I never had.

She was loving, generous to a fault, down-to-earth, and practical.

So, she knew. That day her oxygen dropped to catastrophic levels when the BiPAP was obscured for just a moment or two, she knew that there was no coming back.

I’ll just say it. 2023 was an emotional cluster%@!#.

I have always been able to handle whatever life has thrown at me with healthy adaptive and grieving processes. But death has always been the hardest trigger for me, ever since I was 10 and I lost both a grandparent and a close family friend, who was supposed to be ok after a heart attack, but never made it out of the hospital. My mom’s death in 2001 just amplified the trauma of those first couple and all the ones that happened between. I have my coping mechanisms, but last year they weren’t enough.

I started 2023 with an open emotional wound caused by family drama that wasn’t about to be cleared up any time soon. It still isn’t. Then, my dad’s best friend died in a mirror experience to my mom’s death – same disease, same steps, same process. It was really hard.

I am writing today to let you know why I won’t be coming back.

You came highly recommended by someone I trust more than almost anyone else in the medical world.

However, the first red flags came before I set foot in your office when your scheduling staff told me I would need a referral even though my insurance company did not. This is a blatant money grab employed by hospital systems that is happening more and more often. I know this is a policy you may not control, but it was off-putting. Maybe if it had been the only thing, I could have gotten past it.

But there were other things, both administrative and personal, that didn’t work for me.

I haven’t had to look for one of my core team of doctors for over a decade, but this year I am looking for two, a nephrologist and an endocrinologist. It is a nerve-wracking process and makes me feel unsettled.

I lucked out for the first one, the nephrologist. Someone gave me his name. Of course, I held onto it for way too long before scheduling an appointment. But in the end, I lucked out, and he fit what I was looking for.

Perhaps that spoiled me for the next one.