It’s not often I get to talk about how well things in the healthcare system work. Especially systemically as opposed to individually. I’ve had some good experiences with individuals, but generally the best I can say about the system is that it’s a hassle that costs me money.

The one exception I can think of is when I went from Aetna specialty pharmacy to another pharmacy benefits manager, and it was a disaster. When I met an Aetna pharmacy employee at a conference several years later, I told him I never knew I had it so good until I had to switch. He responded that no one had ever said anything like that to him.

In my post before the holiday break, I talked about self-sabotage, something at which I am an expert.

That also means I have become an expert at pulling myself out of it. Most of the time, it just runs its course, but sometimes I have to employ an old tool, a stronger one I developed during my first healthcare rollercoaster – escapism.

Escapism takes many forms: immersing yourself in a book, literally escaping by taking a trip, or even sinking into favorite hobbies like exercise or gardening. The point is to get out of your self-sabotaging brain, sink further into your “I need a break” brain, and shut out the world for a little while.

I am afraid of success.

Weird, right?

Nevertheless, sometimes, when I am at my absolute best, my contrary subconscious decides that, because I have taken so many emotional hits in the past, it’s time to deliver another one before the universe can. It’s an exhausting, unconventional way of exerting control. It’s also really unhealthy.

What does it look like?

There are a lot of things – little, nitpicky things – that affect how difficult the patient experience is, such as expense, physical access, health illiteracy, just lots and lots of things. Then, there are other people (aside from the doctor). Office staffs can make or break a patient’s experience at doctors’ offices.

Office Staff 1

This week, I had two appointments at two separate facilities within the same hospital system. I scheduled them carefully. (The staff at the second facility is not the comparison I am making. I mention it to make a point about respect.)

I try to keep an eye on various health-related public policy trends, on both the state and federal levels. It’s in my personal, educational, and professional blood. Every once in a while, a Supreme Court case will pique my interest, as well. I’m not sure what that says about me, especially these days.

Recently, I attended a briefing that made me aware of a case before it hit the Supreme Court. It caught me by surprise because it had progressed to a point where I thought it would have gotten some news coverage. General consensus is that it is too complicated to fit in the average sound bite.

But not for a blog post. Let me introduce you to Braidwood Management vs. Becerra.

When I was a kid, there was a cartoon, The Adventures of the Little Prince, where the main character lived on a tiny planet in space and caught a ride on a comet to get to Earth. Adventure ensued. (There’s a book, too, which I adore, but I can’t read unless I need a good cry.) One of the reasons I loved that show so much is that I wanted to live so close I could touch stars.

I still love space. I never studied astronomy, but I always consume pictures of stars, planets, galaxies, and this year, a black hole(!) as if it were my last chance. It’s something to wonder at for a person who is admittedly jaded.

Following last week’s post about how I push to appear normal, life decided to imitate art and illustrate why I don’t like to talk about my day-to-day because it would just be scary and overwhelming.

I had a two-day event this week I was really excited about. It was a new area to learn about and the hosts wanted my input for a roundtable they were holding. Everything went well the first day, but when I took off my jacket before getting in the car, one of what I view as my insulin pump’s design flaws – the lip on the part that goes into my body (infusion set) -- caught in the fabric of my shirt and came out.

I didn’t know it and as I drove home, so I was unaware that my blood sugar was rising quickly.

I am a hypocrite.

I tell the kids in my life to embrace their inner weirdo. We’re all weird in some way, right? It helps inoculate them from bullies and understand that the ways they are different from their peers can be beautiful.

I believe that. On so many levels. I have not lived a “normal” life, so I have never striven to be “normal”. I have, however, striven to appear normal. Like dumping all your laundry in the closet before guests come over.

Because what is normal?

I’ve said it before, and I will say it again: words matter.

Pay systems and policies aren’t the only things that are becoming more patient centered in healthcare. Over the last several years, I have noticed that the language of healthcare is changing, too. When I contracted meningitis, the word that was casually thrown around to describe my likely future was “vegetable.” It came from the use of “vegetative state” to describe a person who appeared to have no awareness of either internal or external circumstances (comatose). It was a term that had been used for almost 100 years, and the ancient Greeks actually used it to indicate a lesser form of life, one that had no soul. Like a plant or a vegetable. Now, we recognize that this word is more than a little insensitive.

That is an extreme example, though not uncommon. It’s almost as if medical staff didn’t think we, or our family, friends, or other loved ones, can hear them when they talk about us.

In my last post, I made a distinction between everyday anxiety and what qualifies as a disorder. I suspect that I bordered on disorder when I was young, but I mostly grew out of it. Now, the residuals are all things I can live with. For me, that’s the difference. Can I live with it or is it getting in the way of the life I want?

I went to a different high school than the kids with whom I’d spent the last decade in elementary and middle school – including the extra year I took after I recovered from meningitis. They called it Reading Readiness, but it was basically a repeat of kindergarten. Going into ninth grade, I was totally intimidated by being surrounded by strangers. I knew an upperclassman or two, but that didn’t count. It wasn’t as if we had access to the same classes.