Compassion Corner: Your Illness is Real: How to be Seen, Heard, and Treated with Compassion

Compassion [kuhmpash-uhn] noun
A feeling of deep sympathy and sorrow for another who is stricken by misfortune, accompanied by a strong desire to alleviate the suffering.

Compassion Corner is a series from Patient Worthy that will focus on the subject of compassion in the healthcare and rare disease space. In this series, we explore the role of compassion in this field and what it means for caregivers, patients, and others.

source: pixabay.com

 

Author Meghan O’Rourke recently interviewed with the Aspen Institute about her journey with chronic illness and the origins of her book The Invisible Kingdom: Reimaging Chronic Illness. The book details her ten-year struggle to have her illness acknowledged and diagnosed. Meghan explains that her target audience covers millions of people who live with invisible illnesses. She wants them to be treated with compassion and to be heard.

Megan’s Invisible Illness

Megan’s illness began in her early twenties. For the next twenty years, she was unable to find a doctor who could identify her illness. She describes her years of symptoms as being on a rollercoaster, yet they continued to worsen.

Megan admits to questioning her own perceptions, wondering if it was “all in her head.” She became determined to be her own counsel, and after years of searching was diagnosed with several autoimmune diseases. In addition, she was diagnosed with postural orthostatic tachycardia syndrome (POTS), a nervous system disorder.

Megan’s Own Discovery

​Megan observed that doctors often dismissed her description of her symptoms after seeing that the tests did not reveal any negative findings. They would not accept her testimony that something was wrong with her physically.

Megan now knows that she was in the company of hundreds of thousands of patients who are dismissed by their doctors, or at a minimum, treated as having insignificant symptoms.

The question that kept returning to the forefront was “How could I be so sick and still not have a diagnosis?”

The Two Challenges

Megan set out two challenges for others in the same situation. The first challenge is living with the illness. The second challenge is not being heard and seen. Her writing helped her tremendously. For anyone, just writing in a personal journal has many benefits.

Yet when a doctor would tell her that she seemed to be in good health, it had a devastating effect on her. It made her suffering seem meaningless. Megan was beginning to think her health would never improve.

The thought of recording her suffering brought comfort to her and she hoped it would do the same for others.

POTS and COVID

Megan had to “proceed with caution” during the onset of the pandemic. POTS or a similar disorder was often seen during long COVID. Megan’s doctor warned her that symptoms worsened significantly when one of her patients with POTS contracted COVID.

As of June 2020, Megan spent much of her time writing about long COVID and talking to patients as well as researchers who were trying to understand COVID and its ramifications.

At the same time, she was reporting for her book and the many ways infections can bring on a long-term illness. That includes autoimmune diseases, myalgic encephalomyelitis, or post-treatment Lyme disease syndrome.

Megan was rightly concerned that SARS-COV-2 could trigger chronic illnesses such as long COVID.

Public Health Measures

In reviewing the invisibility of her illness and the undiagnosed illness of others, Megan wondered what steps public health officials should take to afford improved protection for the immunocompromised. A proactive approach is definitely worth considering.

Megan suggests that the most important issue remains the recognition of the silent illnesses in the U.S. She suggests building a more informed narrative whereby our society values caring for each other. She realizes that this is a tall order, but the telling of urgent stories about rare diseases is a good start.

Then she offers a practical solution whereby doctors receive training in the care of chronically ill patients, offering warmth and compassion along with prescribed medication.

Megan cites studies that show the powerful effect that empathy has on chronically ill patients.

The Value of Caring

Megan admits that many times she looked for a deep connection with her doctors. She wants healthcare workers and doctors to know that the simple act of validating a patient’s symptoms has a beneficial effect on the patient. Their validation helps the patients greatly as they are trying to live with their illness.

 

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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