Two pieces about the mental health toll chronic illness can take on women are relevant to this COVID pandemic.
I. Esmé Weijun Wang’s “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.”
Wang also shares the following:
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.
Another time, she told me that she’d read about a woman in excruciating pain who could not imagine getting through that entire, endless night. A night can be so long when one hurts. Instead, she chose to get through every five seconds. She would get through the first five seconds. And then she would get through the next five. Over and over. It seems extra cruel to make time slow down when all we want to do is get through this time faster, but trust me: that we will get through this very slowly is only thing of which I’m certain.
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.
About the process Ramey has endured, per Kirkus Reviews:
She visited countless specialists and was treated with a host of medications that sometimes temporarily relieved symptoms, but more often not. She experienced ‘extremely bad—and often explicitly abusive—medical care,’ including botched surgeries…Repeatedly prescribed antidepressants from frustrated doctors, Ramey indicts the medical establishment for its ‘contempt for women, and for the feminine,’ and recommends the new approach of functional medicine, which holds that ‘diet, lifestyle, and attitude are the cornerstones of health’ and incorporates ‘testing, treating, and stabilizing’ the four systems involved in ‘modern chronic illnesses:’ the gut, liver, immune system, and endocrine system. Finally, her condition improved through common-sense changes: ‘Sleep, movement, a nontoxic environment, and a well-nourished psyche,’ Ramey concludes, are the basic needs for recovery.
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.’ Ramey connects her response to the current COVID-19 crisis:
To watch so many people struggling with being homebound, watching their job go up in smoke, suddenly feeling on the the brink of economic ruin and watching the government not doing enough, not having enough tests, having no tests, all of these things are the things that people in my community have been suffering with for decades, and being told that we’re making it up, that it’s just a hallucination. It’s wild to watch suddenly everyone having almost a carbon copy experience of how horrifying it is…
I hope this shared experience of how bad that actually is can open up, after all of this is done, a better conversation about the lives of people in my community that have been dealing with a lot of these same components for a really long time. And maybe allow people to be a little bit more empathetic and helpful as we move forward.