We hear a lot that “healthcare is broken” and I think that is too simple a statement. Healthcare is infinitely more challenging based on the illness or complexity. The delusion is assuming the healthcare experience is the same for everyone. It is not a one-size-fits-all. That goes for socioeconomic status, geography, proximity to care, insurance and so much more. It’s an uneven playing field. But, in an effort to standardize healthcare delivery for patient safety and measurable clinical outcomes, we have outdated care paths that don’t necessarily suit the chronically ill.

Everyone has a PCP

I have never in my life had an actual Primary Care Physician or PCP – until last month. And I have to say, I don’t see the appeal.

If you consider yourself healthy and infallible you might see your PCP for an annual checkup, a physical, vaccines, or minor issues. They tend to be your de facto quarterback in wellness and a soft entry, when necessary, into the world of complex care. In theory they have advanced knowledge and existing relationships that can help explain specialists, advanced treatment, and coordinated care when navigating multidisciplinary care and large hospital systems. They provide the map as you set out on an expedition.

I was diagnosed with MS and dropped headfirst into the world of specialty care without that soft entry. Add to it that I work in healthcare. I possessed substantive relationships with clinical experts and leaders throughout Cleveland Clinic long before I needed them for consultation or medical direction. I already understood the many members in a care team and the expectations I was entitled to have with those individuals.

In a recent text exchange with my neurologist when I was spiraling from illness, I stated how I was feeling, what I thought I needed (including the specific medication), and the fact that I needed intervention before my symptoms escalated. I softened my text by writing, “I know I am not a doctor.” He immediately responded, “You kind of are a doctor now.” High praise indeed.

Textbook vs. lived experience

Dan gets it because he’s a gem of a human, and we have an established rapport. But most people – most doctors aren’t Dan. And that, is the crux of the problem. Living with a disease and how it impacts my life can never be taught in med school or succinctly conveyed in an annual medical appointment.

When you’re chronically ill, you’re the quarterback. In my experience, nobody is coming to help bear that burden. You have to make 10,000 decisions a day. I live with a tolerable level of permanent discomfort. A tolerable level of permanent pain. A not-at-all-tolerable level of permanent dysfunction. How I feel on a daily basis would keep most people home from work and in bed.

The level of illness, anxiety, and trepidation I feel to do anything would be unfathomable to most people. Just because I don’t say it or you don’t see it, doesn’t mean it isn’t pervasive – it’s always there. When asked a normal question like, “So what brings you in today?” I want to scream.

Get comfortable with uncertainty

It’s not all bad. My frequent visits to the Emergency Department have resulted in the resident or attending asking what I need, me stating it outright, them possibly conferring with Dan, and me getting exactly what I asked for and needed.

For my own sanity, I must stop the anxiety train at every turn. When it’s hard to walk, does it mean that I will never walk again? When I am suffering from crippling fatigue, does that mean I will live the rest of my days on the couch? I feel extreme joy when things go right and unbearable sadness when I’m ill. But throughout that volatile swing, I appear fine. I don’t assume that I will get better. I just try to put one foot in front of the other (or keep wheeling if it’s a wheelchair day).

My dysregulated system

Imagine then meeting a new doctor – a PCP – who wants your entire history, your health concerns, your vitals, and more, but who has absolutely no subject matter expertise in your disease or experience with your progression. Add to it, my aforementioned institutional healthcare knowledge. My PCP would be happy to refer me to this specialist, or that specialist but couldn’t offer anyone particular they would recommend as Cleveland Clinic is too large, too vast (which to be clear, is a valid argument).

My experience consisted of the following:

• Go to your PCP with questions and an agenda.
• Don’t expect any answers, specific direction, or help of any kind.
• Be told they don’t what that is, they can’t help you, and that they had no idea how to answer my questions.
• Listen to them repeatedly recommend that I confer with my specialist.

I know this PCP is a good and caring doctor. I am sure they are a great fit for someone, just not me. I don’t blame them. But, as the visit went downhill fast, my internal monologue was loud and repetitive shouting “WHY AM I HERE?”

I’ll pass

I played by the rules. I waited 10 months for a PCP appointment to establish care. I took the first available appointment at my desired location. I secured a ride to the appointment. I brought along the magnificent Maggie, (my platonic soul mate) who knows everything about my health and quite frankly, my mental state. It’s unnerving that she and I can communicate with one look and, without a doubt, be 100% aligned. I did it right. And I left annoyed, angry, and despondent. It’s not often I am rendered speechless, but I was so dumbfounded at the pointlessness of the appointment I nodded mutely until it was over and finally all but ended it myself. Maybe it’s different if a PCP helps you through a diagnosis. But coming in after more than a decade of complex care? Forget about it. Two thumbs down. Hard pass.

So is healthcare broken? Maybe, I don’t really know.

But does healthcare make a lick of sense for the chronically ill as it currently operates? Hell no.

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My heart goes out to anyone desperately seeking a diagnosis or those with a diagnosis but overwhelmed by the learning curve of medicine and chronic care.

It needs stating that I am grateful for the doctors that make life easier for us. Your job sounds exhausting. But pardon me if I stick with 10,000 specialists for a while, because there was nothing primary about the care I received.