Caring for the Patient with Invisible Illness

As physicians, it is humbly satisfying when we are able to utilize our training and expertise to adeptly diagnose, treat, and sometimes even cure those who come to us with a particular malady. Many of us have the unique privilege of caring for many different types of patients.

Some of us are drawn to specialties where the diagnoses and required interventions are obvious. Think of the Orthopedic Surgeon who takes care of patients with skeletal trauma, or the dermatologist who is able to help a patient get rid of a disfiguring skin condition.

As a pediatrician, I am part of a group of professional ‘gardeners’ who are drawn to care for the tiniest forms of life, helping them to survive the elements and thrive in a complexly orchestrated but sometimes quite harsh ecosystem. An ecosystem that can unwittingly threaten their survival and ability to blossom into beautiful flowers.

Perhaps the most challenging type of patient to treat is the individual who appears to look completely “perfect” on the outside but who is afflicted with a condition that is invisible to the outside world.

This issue of Physician Outlook Magazine is dedicated to those patients who suffer in silence, who are often misunderstood, judged, or ignored.

“It is only with the heart that one can see rightly. What is essential is invisible to the eye.”
-Antoine de Saint-Exupery

This world of invisible illness, where those afflicted often self-identify as “Spoonies” (a term famously coined in 2003 by a patient blogger with lupus), is a growing universe and one in which physicians receive very little training.

Throughout this issue, you will read stories authored by doctors, patients, and other professionals who are living with invisible illnesses, helping loved ones with unseeable maladies, or treating patients who are suffering invisibly.

Dr. Adam Harrison, a British doctor, lawyer, and coach, sheds light on the lasting effects of chronic workplace bullying.

Dr. Mark Lopatin, a recently retired rheumatologist and author of “Rheum for Improvement,” discusses the dangers of assuming that patients with fibromyalgia and other forms of chronic pain have issues that are “all in their head.”

Charles Bens, PhD, points out the importance of assessing immune markers when treating patients with invisible illnesses. Traditional labwork can often be normal, but there are ways to optimize nutrition to improve symptoms.

An interview with Dr. Amy Shah provides a glimpse into the world of the microbiome and the groundbreaking work being done in that medical field.

Dr. James Harris Jr. (in a prequel to a memoir he is writing) reveals what it was like growing up with a crack-addicted father. Adverse Childhood Events are prevalent in many who suffer silently, but this surgeon is living proof that it is possible to overcome even the most devastating experiences.

Dr. Laura Fortner’s article on litigation stress discusses the many lasting physical and emotional effects that occur when a physician is accused of malpractice.

Dr. Nita Chen brings the world of art to medicine with her full-page comic. It is no easy task becoming a doctor, and this cartoon demonstrates that in a relatable way.

This issue features an update about the practice of “Chronically (Ch)ill” former orthopedic surgery resident-turned-physiatrist Dr. Alissa Zingman, who, after years of being told she was a hypochondriac, was finally diagnosed with Ehlers-Danlos Syndrome. She is the founder of a unique integrative multi-specialty practice that is dedicated to the treatment of patients with EDS and other hypermobility syndromes.

Sometimes necessity becomes the mother of invention, and Terry Wilcox, co-founder and the Executive Director of Patients Rising Now, writes about how the COVID-19 pandemic, which has given rise to a cohort of virus survivors afflicted with “long-COVID,” may actually help to shed some much-needed light on the plight of those with biopsychosocial illnesses, particularly persons of color, whose medical needs have traditionally been ignored to a greater extent when compared with white counterparts.

Christy Gupton and Liz Antaya of Mitigate Partners bring awareness to some of the “outside of the box” work being done by those in the Benefits Management industry. Direct primary and specialty care models ARE appropriate for patients with chronic illnesses and can save employers and patients significant money, AND often compensate physician-led care teams better than the traditional, very expensive bureaucracy-laden BUCAH insurance products so prevalent in the marketplace.

Dr. George “Jeep” Naum and Jill Labecki both wrote about what it is like to love family members with living invisible burdens. Their stories are inspirational for families who may be struggling.

Roxanne Bruce, MBA, DrBA, has led several support groups for the National Multiple Sclerosis Society and published a book that helps patients effectively communicate their symptoms and challenges with their doctors. She challenges readers to schedule a week of their lives as if they had a chronic illness, following the guidelines of “Spoons” and “F*cks” to help better understand what it is like to live with a chronic, invisible illness.

Back and neck pain are common amongst patients with chronic illnesses. The beautiful art on the cover and throughout this issue is the creation of Dr. Lucie Mitchell, who creates unbelievably beautiful images using abstract spine photography.

As I read through the articles featured in this issue, I am reminded of one of my favorite books as a child, “Le Petit Prince,” written by Antoine de Saint-Exupéry. This famous parable (which is more of a cautionary tale for adults than a children’s story) tells the story of a Little Prince who leaves his tiny asteroid planet because of the vain demands of a beautiful but thorny rose with whom he develops a caretaker relationship.

Patients with chronic, unseeable illnesses are much like the beautiful rose that depends on the protection of its thorns and a glass jar to survive.

As a physician, I can relate to the Little Prince’s decision to leave the rose and his yearning to return to her after exploring the universe and realizing that it was a mistake for his soul to have left his beloved rose despite her “silly games” and neediness.

The reality is that our chronic patients NEED us, and we need them.

All of us involved in healthcare (physicians, patients, and all of the providers who make up care teams) have fallen victim to unfair rules that are being played in the healthcare space. The Corporate Practice of Medicine has made us all become unwitting players in a game that leaves us unfulfilled, and like the Prince, looking for answers.

Joining forces with others outside of medicine to help make visible the rules of the game is one of my callings through Physician Outlook Magazine.

I encourage all reader to share their voyages as we continue to help “Take Back Medicine One Issue at a Time.” ☤