A new book, The Invisible Kingdom: Reimagining Chronic Illness, by Meghan O’Rourke, author, poet, editor and podcaster, not only articulates what many experience, she is now providing a framework for those affected by chronic illness to share their experiences and learn from others at her website. An excerpt of the book is available at The Plight of the Invisibly Ill.
When my mother died in 2008, I was struck by how taboo grieving still seemed to be. And at this time, my health also worsened. I launched into a years-long quest to understand what was wrong with me, talking to expert researchers and doctors and, most of all, to fellow patients. I learned I was hardly alone. There was a whole realm of sick people whose lives were being turned upside down by “vague” and “subjective” symptoms—and most were being dismissed or told their illnesses were due to anxiety, or were psychosomatic. This didn’t make sense to the reporter in me. And so I began digging in to learning more, and what I learned changed the way I thought about my body, health, and how our health care system might better serve patients and health care workers alike.
Today, I live with the ongoing effects of long-untreated tick-borne illness, hypermobile Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, and autoimmune thyroiditis. I am incredibly lucky to be able to function, but every day is an exercise in balancing my needs, life’s demands, and limited energy. In the meantime, the illness remains mostly invisible to everyone around me.
Many people still suffer in silence with poorly understood illnesses, and plenty of medical practitioners continue to dismiss patients like me, whose symptoms roam the body but who have what appear to be normal test results. Doctors once thought of multiple sclerosis as a form of hysteria. Tuberculosis was viewed as a disease that afflicted romantic young souls—until scientists discovered the bacterium that causes it. For decades, certain forms of cancer were thought to be a consequence of repressed emotions.
Today, we like to believe that we are rational about disease and immune to this kind of metaphorical thinking. But research shows that these views are still endemic in medicine, particularly when it comes to poorly understood illnesses, which are often seen as symptoms of a psychological problem. While advances in our understanding of mental illness constitute one of the great successes of 20th-century medicine, patients with immune-mediated illnesses confront an often reflexive categorization of their physical symptoms as mental ones—which presents a barrier to proper care and research. If medicine can’t see or name the problem, it can neither study nor treat it.
With six in 10 Americans living with a chronic condition, you’d think there would be better approaches to how we as a society help and support those living with it. However, the old stereotypes continue of “but you look so good,” or “it’s all in your head.” O’Rourke has taken on the task of trying to address some of these issues.
Definitely check out more of her interviews on uTube as well
as various podcasts. She is sharing her experiences in order to help others as well as herself.
In addition, below are some other links to help with "being seen and heard" when living with a chronic condition:
• “But You Look so Good: How You Look Isn’t Necessarily HowYou Feel.
• How I Talk to Others About My Invisible Illness
• ‘I’m Fine’: Why Do Chronic Illness Patients Keep Saying This When They Are Actually Anything But?
• How to Support Those with Invisible Illnesses
• 6 Sneaky Signs Someone Isn’t Supportive of Your Chronic Illness — and What to Do About It
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