Medicine moves so quickly today that there may be hardly a moment for genuine empathy and connection between physician and patient. During ward rounds, it’s 1 bed to another, often in minutes, longer if the chief physician decides to undertake some form of medical teaching. Empathy has become a professional position to adopt, an item on a checklist to ensure that the patient feels heard. 

Part of the reason for this is that physicians must maintain some emotional distance from their patients in order to handle the revolving door of patients they see every day. If a physician becomes too emotionally attached to the clinical progress and outcome of a particular patient, the physician might struggle to give adequate attention to the dozens of other patients vying for their attention. Hence, empathy is like a commodity that needs to be conserved for the sake of fairness to all. 

The Suffering Posed by Chronic Conditions 

In Neurology and Therapy, Law and colleagues talked about the “lived experiences” of patients with one certain disease—myasthenia gravis. The term “lived experience” seeks to break down the perception of patients as mere physical embodiments of pathologies that need to be treated. It poignantly highlights the fact that patients are suffering human beings who often have to deal with their chronic condition day in and day out, with an impact that goes beyond the brave faces they put on when speaking to their physicians during follow-ups.  

Read more about myasthenia gravis etiology 

What must it be like to live with a chronic disease that continues to be a burden on themselves and their caregivers after a patient walks out of the consultation room? How do they cope when life opportunities get whittled away due to pain and fatigue? What courage must they find within themselves to get up every morning and face a new day? In other words, what are their “lived experiences” when faced with chronic conditions that are outside their control? 

Physicians would do well to give due thought to the invisible scars faced by their patients. 

In BMC Psychiatry, Honey and colleagues conducted a study on the usefulness of lived experience research resources in helping physicians understand their patients. They concluded, “By advocating for lived experience research and sharing the findings in accessible ways, researchers, peer workers and others can support people living with mental health issues to develop new knowledge that they can use for their self-empowerment, recovery and wellbeing.” 

Living With Myasthenia Gravis

Let’s return to the specific example of myasthenia gravis. Patients with myasthenia gravis first experience symptoms such as muscle weakness and fatigability, which then mature into more generalized symptoms. They are also at risk of experiencing myasthenic crises that may require respiratory support. 

We know from the medical literature that the most persistent symptom experienced by patients with myasthenia gravis is unrelenting fatigue, which drastically impacts their quality of life. However, what does it really feel like to live with this chronic condition daily? This is what Law and colleagues set out to discover. 

Using a variety of resources (research, patient feedback, and articles), the research team attempted to provide a deeper insight into the lived experience of patients with myasthenia gravis. Here are some of the themes they uncovered: 

  • The fluctuating and unpredictable nature of symptoms has a substantial impact on the lives of patients. 
  • Patients often feel they need to make continuous assessments of their current symptoms and make trade-offs in all aspects of their lives. 
  • Patients can sometimes feel hesitant to switch to new forms of treatment, even if their current treatment is suboptimal, due to a phenomenon known as “treatment inertia.” 
  • Patients may feel a sense of disconnect with their healthcare professionals, driven by a perceived lack of understanding of their disease burden and differences in treatment goals. 
  • Patients reported symptoms of mental health deterioration, including anxiety, frustration, loneliness, and depression. 

This study highlights 2 ways chronic illnesses can negatively impact patients’ quality of life: in aspects that are predictable, and in aspects that are not. Patients with myasthenia gravis, for example, are well aware of the muscular pathology that is part and parcel of their illness. However, they do not have the luxury to predict and prepare for fluctuating symptoms. A combination of the two can cause deep misery. 

Read more about myasthenia gravis treatment 

“As a result of living with an unpredictable body, our analysis shows that people with [myasthenia gravis] report having to navigate a constant state of adaptation,“ Law and colleagues wrote. “This involves making continuous assessments and trade-offs in all aspects of their life, impacting both day-to-day and major life decisions.”

Picture for a moment living with this set of symptoms on a daily basis—how would you like your physician to respond? Flip the script around and this tells you exactly what kind of physicians we should aspire to be — empathetic, caring, and mindful of the deeply personal struggles that our patients are facing. Law et al hoped that their study on the lived experiences of patients with myasthenia gravis “will enhance [healthcare professionals’] understanding of this rare disease, thereby facilitating dialogue with patients and encouraging shared decision-making.” 

References

Honey A, Boydell KM, Coniglio F, et al. Lived experience research as a resource for recovery: a mixed methods studyBMC Psychiatry. 2020;20(1):456. 2020;20(456). doi:10.1186/s12888-020-02861-0

Law N, Davio K, Blunck M, Lobban D, Seddik K. The lived experience of myasthenia gravis: a patient-led analysisNeurol Ther. 2021;10(2):1103-1125. doi:10.1007/s40120-021-00285-w