Last week, Dr. Colin Halverson, PhD, addressed ethics enthusiasts in a talk entitled, “Pain and Prejudice,” for the Fairbanks Lecture Series in Clinical Ethics. Dr. Halverson studies the clinical journeys, identities, and realities of patients diagnosed with (hypermobile) Ehlers-Danlos Syndrome, a relatively elusive and professionally understated and misunderstood disease of the connective tissue. In this IUCB blog post, I’ll introduce Dr. Halverson, and then discuss his talk.
Dr. Colin Halverson is a Center Investigator at the IU Center for Bioethics, as well as Assistant Professor of Medicine at IU School of Medicine. Dr. Halverson received his PhD in medical and linguistic anthropology at the University of Chicago, and subsequently completed fellowships in bioethics at the University of Chicago and Vanderbilt University. His research focuses on medical genetics, patient-doctor communication, consent, and return of clinical/genetic results.
In “Pain and Prejudice,” Dr. Halverson describes his ethnographic research, including clinical participant-observation and interviews with 21 patients suffering hypermobility-type Ehlers-Danlos Syndrome (hEDS). hEDS is an inherited disease, though with an (as of now) unknown specific genetic cause. It affects mostly females (95%), with an estimated incidence of 1/5,000. Diagnosis of this disease is tricky, because it resembles other connective tissue disorders, and can have (especially early on) nonspecific symptoms. hEDS can cause joint hypermobility, stiffness, chronic pain and fatigue, occasional cardiovascular and gastrointestinal complications, dysautonomia, osteoarthritis, and low bone density. hEDS is a debilitating illness with lifelong effects.
Dr. Halverson refers to the clinical journey of his hEDS subjects as their ’diagnostic odyssey:’ an arduous experience that occurs over many years as patients seek diagnosis and treatment of a disease they’ve largely been left to discover on their own. The diagnostic odyssey of hEDS tends to include the following moments and/or patterns:
The ‘always-already moment,’ wherein patients recall a history of childhood symptoms not yet recognized as debilitating or pathological.
The ‘trigger moment,’ wherein the patient fully commits to the diagnostic odyssey.
The ‘road of trials,’ wherein symptoms proliferate and worsen.
Secondary effects of the disease, which affect the patient’s personal life, often necessitating the sacrifice of hobbies and relationships.
Psychological sequelae as a result of the aforementioned life changes/losses, which are caused by an outwardly and seemingly ‘invisible disease.’
Clinical ignorance, as doctors tend to disbelieve patient accounts of vague symptoms; physicians can appear aloof or distrustful of their patients, which alienates them in turn.
Self-diagnosis, wherein the patient discovers hEDS and external support systems of those who have lived with the disease; the patient can now begin coming to terms with the reality of hEDS as a disability or chronic illness.
The ‘diagnostic apotheosis,’ wherein a patient’s self-diagnosis is vindicated by an agreeing clinical diagnosis, heralding a sense of relief.
Though arguably easier to read, numbering these experiences as I have does a disservice to Dr. Halverson’s goal of giving a narrative pattern to the stories he collects from his participants (hopefully he’ll forgive me). Narrative is more inviting, allowing us to participate in the experiences of others. The challenges faced by hEDS patients reveal and accentuate the depths that exist between clinicians and patients, and how critical diagnostic services (or even effort), good listening, and long-term relationships can be in affirming the identities and adversities of these patients. Though the ability to take a more ‘humanistic,’ empathetic view is emphasized in medical school and clinical training, it can be largely lost in the quotidian practices of physicians who easily become strangers to patients’ experiences outside of the exam room, or who assign patients with nonspecific complaints the reputation of ‘poor historian.’ If the clinician can recall the odyssey of hEDS patients, perhaps he will be more careful in his interactions with frustrated patients, and more open to hearing nonspecific complaints with a diagnostic, or, at least, empathetic ear.
The views expressed in this content represent the perspective and opinions of the author and may or may not represent the position of Indiana University School of Medicine.
Aubrey Kenefick is a third-year medical student at IU School of Medicine and a Graduate Assistant for the IU Center for Bioethics. She is currently taking a gap year in her medical education to pursue a Master’s Degree in Philosophy with a concentration in Bioethics at IUPUI.