What Eczema Tells Us About Medical Care…
– Mary Ann Boe, JGP Compassionate Partner Connector
Intense itching. Blisters. Scratching. Scaring. Restless nights. Chronic fatigue. Embarrassment. Shame. Guilt.
All creeping into daily life, coloring choices, tainting relationships, escalating anxiety and depression, and adding to chronic stress and inflammation.
This is the story of eczema (also called atopic dermatitis), and with about 20% of us afflicted before age five––extending into adulthood for half of that––it is likely you know someone burdened by it.
Although not obvious, the underlying pattern of causation is the same as for the other chronic illnesses accounting for 90% of our medical care––like diabetes, high blood pressure, heart disease, chronic pain, cancers and dementias.
But just like the late 19th and early 20th centuries, when it took wholesale understanding of germ theory and change in practices to make the incredible improvements in medical care of that era, we find ourselves in a similar situation, in that we are just beginning to understand the shift in the predominate causes now making us sick.
To change our path of our ever-increasing burdens, cost and frustration with medical care, we need to change our understanding of illness and our roles as patients and medical professionals.
So, what can eczema teach us about all that?
For starters, just like most other chronic illness, it is not infectious.
At the core, it stems from internal imbalances like:
Overactive inflammatory response
Neurologic hypervigilance
Immune dysregulation (a fancy word for out of control)
These imbalances “trick” our mind and body. They co-opt internal systems ––designed to protect, fix, and keep us in a state of well-being––and turn them against ourselves.
For example, consider that our spinal cords are designed to filter out low-level signals–– like an itch sensation––so they never reach our brain. Kind of like a physiologic junk mail filter. In eczema, this normal filtering mechanism is disabled, allowing our brain to be flooded with “itch” messages, which in turn leads to a pernicious cycle of more scratching, which releases more inflammatory chemicals, causing more rash and more itching.
Similar patterns of co-opted internal regulation is seen in high blood pressure, heart failure and other chronic illnesses.
This is fundamentally different from infection and other external causes of illness, which modern medical care was designed for.
How does this relate to what you expect from medical care?
First, consider what you might currently expect in a medical encounter:
Talk about what has happened since the last visit:
What is working?
What isn’t working?
What medications and treatments are being used?
Any complications or side effects?
Ideally, there is compassion, but still, the patient is a passive partner, under pressure to follow directions, makes lifestyle changes and cooperate with the treatment plan.
When choices are offered, patients are not well supported in how to participate. They generally don’t know as much about the science, yet their frame of reference is incredibly important––because the science is inexact, and much healing needs to take place from within.
As patients, we know the primary focus is going to be about diagnosis and treatment.
We expect the doctor will know the science.
We see that in the protocols and algorithms doctors use for treating eczema, with detailed options and decision boxes focused on topical meds, steroids, phototherapy, up to chemotherapy drugs and expensive immunomodulator injections. All based on the best evidence-based research.
This is not wrong, and at the same time it is incomplete.
The way we apply medical science has been slow to adapt to the growing scientific body of evidence showing:
The fundamental causes of our chronic illness burden.
A Need to nurture the patient narrative written in their mind and body.
Benefits of shared decision making.
In our current system, we are asked about our medications and our blood pressure is checked. Every. Single. Time.
Imagine a system where:
You are encouraged to discuss the stress in your mind and body.
You explore your narrative and how you might rewrite it towards better health.
Treatment options are framed in terms of your unique life situation.
Imagine your future experience, where this happens. Every. Single. Time.
Of course, that is not going to happen yet––not on a large scale. Doctors don’t have time. Most medical practitioners don’t have the mindset and are not consistently trained to engage in these kind of healing relationships.
And for us as patients:
We don’t have a mental map of what it means.
Understand how it can work.
It requires a different level of participation.
Need to throw away some myths we carry about how medical care can cures us.
Here is an example of how this this model can work for eczema:
A recent research article published in JAMA Dermatology showed how applying an integrated mindfulness and self-compassion training program for patients with eczema resulted and marked improvement in their illness––on a level that would be considered a breakthrough if it was a drug.
It also showed it was easier for the patient to do all the other things better, like following directions, taking medications as prescribed and making lifestyle changes.
This was a win-win situation. And a lot cheaper than high-end eczema injections now costing more than $2000 a month.
Our point is that exploring and rewriting our story should be as essential to our health and wellbeing as is taking medications.
The Journey Guide Project was born out of a recognition that this change is imperative to meet our needs in our era of a heavy chronic illness burden.
Journey Guides help patients develop the skills and mindset to:
Explore health needs unattended in medical appointments.
Reduce illness-engendering stress by supporting self-care habits.
Recognize the imperative to explore and re-write the narrative written in our mind and body.
Put that personal narrative at the center of our healing and shared decision-making processes.
Today’s health care isn’t wrong, it’s just incomplete. Journey Guides help to bring the patient narrative into the medical experience to help us achieve our best and most complete care.
– Mary Ann Boe, JGP Compassionate Partner Connector