and Vox. Her books include Unmasked: COVID, Community, and the Case of Okoboji.
Mendenhall applied the "Page 99 Test" to her new book, Invisible Illness: A History, from Hysteria to Long COVID, with the following results:
Page 99 of Invisible Illness describes the excruciating pain Tam experiences with her multiple overlapping conditions, where her primary diagnosis is endometriosis although she has a cascade of other conditions, including mast cell activation syndrome. What's exemplified by this page is that it describes the multiple physical experiences of pain that resonate through her illness journey. Many people, including those with Long Covid, experience mast cell activation syndrome, which I quote from the page here:Visit Emily Mendenhall's website.Tam was diagnosed with mast cell activation syndrome, which can cause flushing, itching, abdominal pain, diarrhea, hypotension, syncope, and musculoskeletal pain. These features are the result of mast cell mediator release and infiltration into target organs. The doctor prescribed steroids, which might have caused her adrenal glands to stop making cortisol on their own. Although steroids helped with one symptom, they caused her to gain seventy pounds and develop severe immune dysregulation. In other words, her body shut down. This type of cause and effect is not unusual for people living with a complex chronic illness.Many people like Tam have symptoms and diagnoses creep up in their illness journey, and struggle with one treatment that makes another symptom worse. In many ways, Tam's story reveals the stories of so many people who manage to manage the ebbs and flows of chronic illness. Tam's courageous story also reveals how patients become experts in their personal health journey and need to be recognized as knowledge partners in their care. They are often the one person who has moved through all the clinical visits, faced unexplainable symptoms, and navigated multiple treatments that have in some cases helped and in other cases harmed. Taking seriously the knowledge and needs of patients is important to lift up as we imagine how medicine may become a culture that tackles complexity with humility and capaciousness.
Much later in the book, I discuss the power of patients as knowledge partners again, arguing:This scenario might also employ patient consultants who are knowledgeable about unverifiable health conditions to serve as knowledge partners. Clinical researchers often note the importance of recognizing and possibly understanding the lived experiences of patients. However, many people do not believe this approach is enough to transform the practice of medicine to be more inclusive and effective in caring for people. Rather, it’s crucial that people living with invisible illness are recognized and integrated into clinical and research teams as knowledge partners. Patients offer invaluable knowledge, from experiential to scientific, that should be viewed with as much “openness and rigor as other forms of knowledge. (p184)It's important to note that "invisible illness" is a metaphor for more than something that does not have a quick and easy test, rash, or biomarker to clearly help a clinician diagnose a health condition. In fact, many of these health conditions can be verified in the blood and tissues or surgeries (like laproscopy) to prove that people are sick with what they think they are sick with. In many cases, these test are extraordinarily expensive and difficult to access due to availability and cost. Moreover, many people who experience excruciating pain, like Tam, may feel invisible in their social lives or in regard to the state in part because their patterns of engagement and needs change in meaningful ways. What's remarkable about patient advocacy communities is their ability to organize and push for meaningful change to bring attention to their needs, symptoms, and treatments that foster recovery.
The Page 99 Test: Unmasked.
--Marshal Zeringue
Posts
