Happy Chronic Disease Month!

Kinda like saying Happy Passover. Passover marks a horrible era in history that culminated in many deaths and was the result of (allegorically speaking) about a century of enslavement. As my friend, Squirrel (for the purposes of this blog) says, Happy Plagues of [fill in the plagues] Day!

But the point isn’t the diseases themselves, but the acknowledgment that hundreds of millions of people live their lives with an extra burden. Literally half of the American population, and many of us with multiples.

This year, I had the opportunity to conduct patient interviews for a client.

I haven’t been admitted to a hospital in 25 years. I have been in an emergency room twice, I think, once for a broken pinkie and once for a medication-induced “cardiac incident”. And now a third time.

Around 3 a.m. one morning, I woke up because I was dreaming that the room was spinning. Weird, right? When I opened my eyes, I got the rude awakening that it wasn’t just a dream.

If you have ever experienced vertigo, you know it’s panic inducing. Your environment moves in ways you are not, and most of the time you have no idea why. And no idea how to stop it. If you are lucky, it goes away on its own.

I was not lucky.

I consider myself fairly savvy about ad campaigns and marketing schemes. Not perfectly immune, but I am happy to let someone give their spiel and then walk away. After all, it’s good practice for them.

But the ads on my timewaster apps are different. They’re just annoying and I can’t skip them fast enough.

But there was this one.

It had dragons and knights and castles and pirates. All the things to catch my fantasy-loving eye. I resisted for years. But about six months ago, I finally broke.

A few years ago, I wrote about how I didn’t think that traditional organizing wasn’t politically effective anymore, and that coalitions – teaming up with stakeholders to achieve a common goal, even if you weren’t a big fan of your partners – were the way to move forward. Coalition-building makes for some strange bedfellows.

I still believe that, even as the current administration challenges every aspect of healthcare infrastructure, at both private and public levels. Could make for even stranger bedfellows.

If you watch TV with commercials, it is impossible to avoid the Zocdoc ads, especially during flu season. In theory, Zocdoc is a great idea. I always thought finding a clinician who works for you is sort of like dating. It’s as much about matching with their personality as it is evaluating their skills.

And much like dating it can take a lot of tries to find a good one. Zocdoc has set itself up as the tool to make the process easier.

Except…

Way back before I was born, as the media and marketing was in their adolescence, Canadian communications theorist Marshall McLuhan coined the phrase, “The medium is the message.” He argued that in communication, the way a message is delivered is just as, if not more, important as the message itself. (Got that from one of my favorite college courses on journalism and politics.)

As with many theories, this one has a broader application beyond the general rules of communication. For our purposes, I would say it is particularly true in healthcare. We already know that trust is a factor in getting messages out and reaching populations that fundamentally don’t trust the healthcare systems. It’s why community health centers are such a good idea and why healthcare professionals often seek to enlist help from religious and community leaders.

But it is bigger than that.

I knew 2025 was going to be bad. (I feel like that could be my “Once upon a time” line for this year.) We all braced for it, but we couldn’t have known how quickly everything would start to feel like it was unraveling. And that’s just the macro environment – politics, economy, foreign relations.

I did not know that 2025 was going to be bad on a personal level. Since Christmas (close enough to count as 2025), my circle of friends has been hit by the loss of four human loved ones, two and a half beloved pets (the third pet is recovering from a serious stroke), and a near successful suicide-attempt. It has only been three months.

I don’t have kids, for a lot of reasons. One of the biggest is that, with all my conditions, I just didn’t have the energy a kid would require. It wouldn’t be fair to anyone involved if I brought a child into the world without the capacity to give them the necessary attention.

That doesn’t mean I don’t have incredibly close and rewarding relationships with several kids, especially the ones in my own family. In fact, I just got back from a kid birthday trip. And to come home to the news that a school aged child had died of measles hit hard.

Guilt, shame, and fear are what I think of as the patient emotional trifecta. Shame is the stigma that often comes with our conditions. Fear is the constant state of wondering when the next shoe will drop and what your future will look like as your condition progresses. But the guilt. The guilt is more complicated.

Back when I was diagnosed, fear was a common motivator applied to patients to keep us on our recommended regimen, whether that regimen fit us or not. But even without using fear as a tool, there is a higher level of awareness of what could happen if we don’t stick closely to the “right” treatment plans. If we step off the prescribed path and we get worse, we tend to tie our worsening symptoms directly to our “misbehavior.”