Last week, a friend with a couple of jobs, a family, and a house-flipping project asked me “how I did it”. She meant how do I find the time and energy to deal with everything my conditions throw my way that healthy and mostly-healthy people don’t have to deal with.

It was an interesting question, and sent me back 30 years to an evening in the midst of The Great Noncompliance Rebellion™ of the early 1990s when we had friends over for dinner. I was taking my blood sugar on one of the old meters that required a “hanging drop” of blood. One of the girls fairly close to my age commented that she didn’t know how I did it. Did what? Hurt myself on purpose every day.

The Affordable Care Act (ACA, also called Obamacare) became a teenager this week. For many of us, its passage changed a lot of things.

It was far from a given, though.

The ACA was passed at great political cost. Not everyone in the Obama administration wanted the President to spend all that political capital on healthcare. Some of his advisors wanted him to stick to something more bi-partisan, like infrastructure. But once the President made it clear he was set on this path, everyone worked their butts off to get it passed. And here we are, despite numerous legislative attacks chipping away at the original law, both attempted and actualized.

I was at a conference earlier this week, and like most of the conferences I attend, patient-centricity was a primary focus. Unlike my last conference, I was one of few patient representatives. Both speakers and attendees were decisionmakers in government, research, and advocacy. I was pleased by a focus on increasing patient engagement to improve everybody’s data.

During one of the panels, the discussion turned toward adherence -- what they used to refer to as compliance in the good old days. Or rather, non-adherence. Adherence, the new word used in the healthcare industry as a nod to sensitivity – apparently ‘compliance’ connotes too much blame – is a complicated and nuanced challenge. There are lots of reasons a person might not follow a treatment.

Patient lives are hard. For many of us living with one or more chronic or autoimmune condition, it’s like having an additional full-time job. It’s similar to all those home DIY shows where you start a project but sink half your budget into fixing the foundation or re-wiring your house. No one can see all the work that goes into it, but without that work, the house is going to fall down around you.

So you do the work, hopefully with help from clinicians you trust. I confess, am very picky about my clinicians. Some would say unreasonably picky. For example, when looking for possible replacements for a retiring clinician, I wondered whether 15 years of experience practicing was enough to handle my weirdo body, many parts of which seem to have minds of their own separate from my actual brain.

And, when I finally do settle on a new clinician, I have high expectations. So far, I have been lucky that I have been able to find so many clinicians that meet those high expectations, especially as healthcare staffing issues grow.

As I wrote about last week, I am in the midst of a close family friend’s end-of-life care. It’s an emotional gut punch, especially since it closely mirrors what I experienced with my mom 22 years ago.

Hearing the post-treatment prognosis of a few weeks was a trigger, of course, but then comes the waiting. There is a terrible banality to death from illness. The days where you try to get in as much time with your loved one as you can, knowing your time is limited, but feeling guilty and selfish at the thought that while you gorge yourself on whatever time you can get, your loved one’s life is a painful half-life of medication, sleeping, immobility, lack of appetite, confusion, I could go on.

It’s hard to watch.

I’m struggling. Drowning a bit, really.

A few months ago, a close family friend was diagnosed with pancreatic cancer, the same thing that killed my mother. It’s a quick, ugly trip once treatment options are exhausted, and though researchers are trying, it is fairly resistant to treatments like chemotherapy. The best course is surgery, but the patient has to be in good enough physical shape to survive the attempt. Often doctors use chemo to shrink the tumor to increase the likelihood of success, which doesn’t help improve that physical shape.

It's one of the most aggressive cancers there is.

Even after over 20 years, that year was one of the most traumatic periods of my life, and, in some ways, I am still not over it. A mirror situation was bound to both trigger and re-traumatize me.

Feelings of isolation are some of the most dangerous and unaddressed in patient life. When patients feel like they are alone in their struggles, they don’t reach out for help because they think that no one else can possibly understand how they feel. Or they think it’s an indication of strength that they figure things out on their own. But a burden distributed is a burden more easily lifted.

We are coming off a years-long pandemic where isolation and loneliness were part of the prescription for survival. There were plenty of lonely people before that, but as with many things, the pandemic exacerbated the situation and perhaps dragged it out of the shadows a bit. In the last few months of 2022, I seem to recall a slew of articles talking about the ‘loneliness epidemic.’ They talk a lot about the official definition of loneliness, how bad it is, and how many people feel lonely, but they don’t talk a lot about what that really means.

You know that feeling you get in the clinician’s office sometimes where you are talking about treatment options and your muscles start to tighten, frustration rises, and your brain starts to itch? Most likely, you are reacting to your clinician’s paternalism, which is rife within the healthcare system despite efforts to move toward patient-centricity and to “meet the patient where they are”.

The first time I experienced this, a clinician cut me out of the conversation completely. I was only 14, old enough to be told what was going on, but sent out of the room while the grown-ups discussed me and my treatment. Those visits had hugely negative impacts on me.

There are other facets to paternalism, as well:

It’s no secret that I am stubborn. I can admit when I’m wrong. Most of the time. Eventually.

Anyway, you get the idea. When I decide where I stand on an issue, after my usual research and skeptical analysis, it’s hard to dislodge, but there is one particular position I have held for nearly 20 years that I am starting to re-evaluate.

I developed cataracts when I was 16 because one factor in the treatment for meningitis is high doses of steroids, which promote cataract formation. Despite my age and medical history, even back then, the doctor failed to inform me of my diagnosis. I found out when my godmother said something about it, but that is anissue for another day.

Since there is no effective, non-invasive treatment for cataracts, they have continued to grow, and grow, and grow. My ophthalmologist says that cataracts grow at about the same rate as sand moves, but after 30 years, dunes do grow.

There’s a movement in some patient-centric care circles toward something called patient-centered medical home, or PCMH. This model brings together a team of clinicians around a primary care office or family practice, a one-stop-shop for care, prescriptions, psychological health care, and many have contracts with specialists to make for easy referrals. It also helps to distribute clinician burden and (hopefully) lessen burnout.

It has a lot of appeal. A team would be able to build a greater familiarity with each patient’s case, with more perspectives and more methods of treatment. Anyone familiar with Kaiser Permanente’s approach will be familiar with the PCMH approach. It works for a lot of people, a whole lot of people.

But from my poster-child-for-complex-care-opinionated-engaged-and-empowered perspective, there are two related weaknesses in the PCMH structure which would make me hesitate to take part.