Patient Story: Meghan O’Rourke Talks Chronic Illnesses in Her New Novel

Meghan Rourke saw the need for more open conversations about chronic illnesses, sparking her to write The Invisible Kingdom: Reimaging Chronic Illness. In an excerpt from her novel, she shares her experience with receiving a chronic illness diagnosis and encourages others to open up conversations around living with a chronic illness.

A Frustrating Journey

Shortly after graduating college in the 1990’s, Meghan O’Rourke began to have symptoms such as hives, dizziness, chronic pain, and night sweats. All of these symptoms were a daily occurrence, yet doctors were not worried O’Rourke was seriously sick. In 2008, after her mother passed away, she was diagnosed with Epstein-Barr virus. The virus left her with aching lymph nodes and a debilitating fatigue that she could not shake. However, most of this was attributed to grief from her mother’s death and not further examined. It was not until O’Rourke was enjoying a beach day with her husband that things took a turn for the worse. While reading by the shore, O’Rourke noticed a rash that was comprised of raised bumps, all in a circle on her inner arm. This was the final straw for her after years of feeling ill and having doctors not believe she was sick.

Taking Action

O’Rourke demanded answers, and she did this by reaching out to clinicians, friends, family, and colleagues. She was diagnosed with an autoimmune disease, however, it still left many of her symptoms unexplained and unresolved. Therefore, she tested out different therapies and approaches, hoping something would ease her symptoms. All the while, O’Rourke’s condition worsened.

Reaching a low point mentally, O’Rourke decided to make connections with people who would understand what she was going through. She talked to doctors, researchers, and other chronic illness patients. As she also continued with her research, she explored the world of chronic illnesses and undiagnosed illnesses, all the while hoping this research would better equip her to handle her own illness.

After countless hours of research and reading about undiagnosed patients who struggled for help in the medical world, O’Rourke realized she needed just one thing: recognition. She wanted to be believed, to be heard, and for others to try to understand what she was going through. Not only did she want this for herself, but for others who are also having a similar experience, and for those who will find themselves right where she was in the future.

Emphasizing Importance Through Her Novel

In her novel, O’Rourke highlights chronic diseases that often do not get the recognition or respect that they deserve. These illnesses include autoimmune diseases, chronic fatigue syndrome (CFS), chronic Lyme disease, dysautonomia, mast cell activation syndrome, fibromyalgia, and even long COVID. Many of these illnesses come with stigmas and false beliefs, which can be devasting to people living with them. Especially since all of these illnesses involve the dysregulation of the immune or nervous system, both of which are integral parts of the body and can affect so many aspects of the human body.

O’Rourke also notes how the conversations around chronic illnesses has changed since the COVID-19 pandemic and the recognition of long COVID. Ten years ago when she got sick, there were not as many conversations or research around chronic illnesses, and that tide is finally starting to turn. However, patients who are currently dealing with a chronic illness are still suffering, often alone due to how isolating it can feel dealing with it. As O’Rourke points out, chronic illness patients need to have a strong support system. A support system that will make them feel heard without judgement, will help them get the care they need, and help with the mental anguish that can come with a chronic illness.

If you would like to read more of Meghan O’Rourke’s novel, The Invisible Kingdom: Reimagining Chronic Illness, you can find it here.

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