What is a Chronic Care Doctor? It Isn’t What I Expected.

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Two roses layed on the concrete floor, text above against wall says "what if doctors were designed for us?"
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Among patients who are familiar with the trial and error process of finding the right doctor to manage their case as a person with chronic illness(es), there’s a common ground in what we look for in a doctor.

Some people are fortunate in that they live in areas where healthcare options are bountiful and within the same provider network, there are multiple options for primary and specialty care. This can make switching providers much easier since the same network often remains covered by insurance.

Others are less fortunate, perhaps limited by insurance, perhaps by location, and may decide to travel hours to find the right doctor.

Based on our own experience, and the advice we hear from others, we develop a bit of a “wish list” for what the perfect doctor can offer us as a patient.

The foundation of my list relies on my main provider being a doctor who treats me as a reliable narrator of my experience. This means that the way I describe my pain, how it impacts my quality of life, and what my expectations are for progress are viewed as factual. A good doctor will make me feel as if I am heard and trusted in how I experience migraine.

This extends a bit further to include how I present theories. My other wish list item is to have a doctor who is open to exploring various diagnostic options and nontraditional therapies.

I know my symptoms best. I do a lot of research. And many chronic conditions overlap a bit. Being able to trust that I can go to my doctor and look into EDS or Fibromyaglia based on the symptoms that do correlate, without the added assumption that I’m trying to build up a chronic illness resume is a big deal. A lot of these conditions are diagnosed based off of exclusion of other conditions, and the goal isn’t to add a diagnosis, but rather rule out some potential comorbid conditions. I need a doctor that is willing to talk these theories out and explain in practical terms how it fits or doesn’t fit.

Both of those wish list items seem relatively simple. But unfortunately bias within medicine makes them hard to achieve.

It is incredibly common to be treated like a hypochondriac or in some instances a drug seeker.

It is also incredibly common for doctors to hold false beliefs as it relates to common conditions – for instance, many doctors don’t believe migraine can be a disabling condition despite it being one of the leading causes of disability in adults under the age of 65 globally.

There’s many other characteristics to me that make doctors a good candidate. A few that I always look for include: being in a network with specialists (so they can easily communicate the care plan with each other), being interested in learning or doing further research if they aren’t familiar with a drug/therapy/condition, and communicating the “why” for various tests or referrals.

In moving across the country, getting established with a new primary care doctor was my first priority.

I came across my current provider in a google search, and one line of his bio caught my attention: “I have special interest in pediatrics, chronic care issues and urgent care issues as well.”

Chronic care issues.

My search for a primary care doctor had landed me with a doctor who suddenly appeared to have an interest in chronic care. I’d never encountered this in anyone’s bio.

Needless to say, my mind began filling with possibilities for what this meant.

My immediate knee-jerk reaction was that I had stumbled across a doctor who had likely spent much of his career focusing in on chronic illnesses that other doctor’s tend to brush aside. I mean roughly 45% of Americans have one chronic illness, so perhaps the focus made more sense than I’d thought.

Until I met my doctor and mentioned his bio.

He clarified that his focus on chronic care included conditions like diabetes and high blood pressure.

My heart sank.

Thankfully, although not well versed on chronic illnesses like migraine, my new doctor checked off the rest of my boxes. He listened well, he actively asked questions to understand my existing, rather complex, care plan. He acknowledged my own credibility as a patient, and put emphasis on how I was able to provide him with education on very new migraine treatments he had not encountered yet. He didn’t question the severity of my condition, and made it clear that when I was ready to transition to a neurologist locally, he would be happy to aid in that transition.

This encounter brought to focus a critical area that is missing from much of our medical system: A specific focus in Chronic Illness Care.

What would that look like? How would it benefit us? How could the introduction of true chronic care shift the quality of care patients with chronic illness receive?

To answer this, I must first invite you into my imagination – because as it currently is, this sort of care doesn’t exist on a broad spectrum, and to truly achieve it we would have to change the medical system as we know it and dismantle a whole host of discrimination.

It would likely begin with a restructuring of general practitioners, meaning that either all or a vast majority would be versed in chronic conditions.

This is very generalized, because I believe it would have to be. The very foundation of “chronic” implies that a cure doesn’t exist and that the fundamental approach would have to be different. Care doesn’t begin and end with a prescription for example.

Across the board, those of us living with these chronic conditions recognize there’s a lot more that goes in to care including lifestyle, diet, mindfulness, support systems and so on. Pain and symptom management are only a fraction of the care we need.

A true Chronic Care Doctor would be well versed in caring for the whole body. We could go to our doctor and learn about different ways to move, or remain active in a way that is comfortable and doesn’t exacerbate our pain. This doctor can provide education on stretching, the importance of hydration, and share varieties of exercise ranging from aerobics, to cardio, to different versions of yoga. Perhaps the doctor then refers you to a class, or an exercise therapist.

The Chronic Care Doctor would also have an understanding of different therapy options. They would likely work closely with psychologists or sociologists who can offer therapy sessions with the goal of learning about stress management, pacing, and prioritizing the acceptance and grieving process that comes naturally when chronic illness changes how you can live your life. This portion of care would aid in acknowledging the physical and mental connections and comorbidities that are present, rather than pinning them against each other.

Chronic Care Doctors would work with you to better understand your symptoms. They would help you find ways to track them, talk about them, and perhaps manage them. Often times what we’re missing is the language to describe what we’re experiencing, but if that language barrier is addressed by the doctor rather than leaving the burden on the patient to recognize that what they thought was normal for their body, isn’t really, care could be provided earlier and more effectively.

To me, Chronic Care Doctor’s would fill the gap where we need doctor’s who take a well rounded approach and utilize many different specialties to care for the whole body. They would emphasize the importance of communication and education. They would serve to support the patient.

They would set goals. For instance, if your goal is to be able to cook and really enjoy your meals, and your nausea plus lack of education in nutrition is preventing you from doing that, your migraine medication that only reduces pain won’t ever allow you to achieve that goal. Instead, a Chronic Care Doctor would want to connect you with a nutritionist and explore some symptom management. The nutritionist may be able to provide new insights into foods you can eat and introduce you to ingredients that may be new to you.

At the end of the day, the existence of a doctor that understood the broad impact of chronic illness, would approach patients in a way to improve their long-term quality of life while also managing the illness. It would be patient-centric care. It wouldn’t be limited to treatments that result in fixing a condition.

It would be an entirely new world of care. It would be the end of 15 minute visits in florescent lit offices. Meeting with your Chronic Care Doctor would feel more like an afternoon out for coffee with a good friend. (And yes this would mean we need a whole heck of a lot more doctors to accommodate this.)

Perhaps the doctor wouldn’t know every treatment or every condition, but they would have connections to specialists who could further assist with management. Their job would be to really listen to you, before any treatment began. The Chronic Care Doctor would be the new general practitioner that is a vital part of your care team – perhaps more of a coordinator, and they would want to ensure your overall wellness and that YOU are supported in all areas.

It sounds pretty nice. It would be about education. Communication. A well rounded care team that worked together. Support. Acceptance.

That’s what a Chronic Care Doctor would be for me.

What would you want them to be for you? Drop a comment!

A.


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