Chronic Illness: Writings About Coping

Chronic illness is the topic of three important works of writing by three different women.

I. Esmé Weijun Wang‘s article “Chronic Uncertainty: Lessons for a global pandemic, from a permanently sick person” (The Cut).

Wang has suffered with chronic illness since 2013. “I half-joke,” says the writer, “that I’ve been preparing for a moment like this for years — remaining at home, in bed, for days or weeks at a time was my way of being. Often, I wouldn’t see my friends for months.”

Selected quote: “In the worst times, we can try to find stability in the smallest things. My therapist once advised me to search my body, when I was experiencing chronic pain, from head to toe. I was to look for one inch that was not hurting and focus on that.”

II. Porochista Khakpour‘s Sick: A Memoir (2018)

Sick is largely about the author’s many years of struggle to get appropriate diagnosis and treatment for chronic Lyme disease, otherwise known as Post-Treatment Lyme Disease Syndrome (PTLDS).

But there’s also so much more than chronic Lyme. “I have been sick my whole life. I don’t remember a time when I wasn’t in some sort of physical or mental pain, but usually both” (Nicole Clark, Vice).

Lidija Haas, New Yorker:

When doctors disbelieve her, or when her relapses reliably ‘coincide with global turmoil,’ she wonders whether her symptoms might indeed be psychosomatic, some form of P.T.S.D.; after she becomes addicted to the pills prescribed to treat her insomnia, she seems open to the suggestion that maybe her addiction is the main source of her problems. She cheerfully lists the ways in which she damages her own health, including by smoking cigarettes every day during the writing of her book.

A widely applauded memoir without a particularly uplifting ending, “…Sick is a bruising reminder and subtle revelation,” states Kiese Laymon, “that the lines between a sick human being and a sick nation are often not lines at all. The book boldly asserts that a nation wholly disinterested in what really constitutes ‘health’ will never tend the bodily and emotional needs of its sick and vulnerable.”

To read an excerpt, titled “Does My Disease Need a Name?,” click on this HuffPost link.

III. Sarah Ramey‘s The Lady’s Handbook for Her Mysterious Illness: A Memoir (2020)

From her publisher: “The Lady’s Handbook for Her Mysterious Illness is a memoir with a mission: to help the millions of (mostly) women who suffer from unnamed or misunderstood conditions–autoimmune illnesses, fibromyalgia and chronic fatigue syndrome, chronic Lyme disease, chronic pain, and many more.” She calls her community WOMIs, standing for women with mysterious illnesses.

The eventual diagnosis of her own chronic illness: complex regional pain syndrome.

Mary Elizabeth Williams, Salon, states in her interview with Ramey, “There’s a phrase you use — ‘the marginalization of mystery illness.’ It becomes, ‘We can’t figure it out, so you’re wrong. The disappointment is not on us, it’s on you.’

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