I’m burning my way through this book, which was just released last week. It’s a compilation of first-person essays and advice from twenty Long COVID patients and experts. Curated by long-hauler Fiona Lowenstein, The Long COVID Survival Guide strikes me as street-level gut-punch practical. I don’t think any of us – patient, family, clinician or government – can feel we understand this condition without reading these essays.
I was hooked when I discovered, in the first patient story, that hives can be a result of Long COVID … which explains the weird, unexplained hives my wife had 4-6 weeks after COVID. Nothing like some front-line patient reality!
That’s a strong example of a big shift that’s happening in medicine: shifting away from expecting doctors to know everything important, and toward doctors actively partnering with the sick people. And by “partnering” I don’t mean asking patients’ opinions: I mean actually sharing the work, acknowledging the value of patients’ work, and sharing decision making – not just on individual cases but on development of remedies and priorities for research.
As I said in Let Patients Help nearly ten years ago, “Patients know what patients want to know.” Said differently: patients know what’s important to patients.
That’s precisely the focus of the paper published this summer by Dr. Bertalan Meskó and me, Patient Design: The Importance of Including Patients in Designing Health Care, and it’s what medicine did not do when COVID patients started reporting that they were not getting better. In summer 2020 we heard of some doctors telling these patients they were wrong, that COVID only lasts a short time. Clearly those doctors didn’t know what they were talking about, but they’d been trained in the false philosophy “If it’s not in the literature, it doesn’t exist.”
It’s a recipe for being obsolete, and it’s especially a formula for being a failure with any emerging disease, where the literature necessarily lags behind. Some essays in this book talk about having their symptoms dismissed by doctors as anxiety, which is a common experience among dysautonomia patients, too. (No surprise, since long COVID can cause dysautonomia.) Recall this slide I used in my keynote for Dysautonomia International:
Medical articles talk about the pathology of a disease (what goes wrong in the body), but as every patient with a serious problem knows, that doesn’t begin to describe the experience (what it’s like to live with the disease) and what to do about your predicament. Only the patient’s voice can provide that – and it’s why patient design is so important.
The best book summary:
From the Afterword by Professor Akiko Iwasaki, whose lab at Yale studies COVID immunology and who among other things has collaborated with author and Atlantic writer Ed Yong:
The Long COVID Survival Guide is a collection of voices of people who have lived with Long COVID—honest, sincere, and at times gut-wrenching. Reading through the book, I had to take breaks multiple times to calm my sorrow and anger. Their suffering is immense and goes far beyond the physical pain. It involves social, mental, and financial struggles, as a quarter of long-haulers cannot return to work.* The voices in this book tell a story of a protracted battle against this debilitating condition—but also a story of finding inner strength and community.* Characterizing long COVID in an international cohort: 7 months of symptoms and their impact (The Lancet, August 2021 … an article written by the patients who first characterized the disease. Kudos to The Lancet for listening to them!)
Prof. Iwasaki also points to each chapter’s “survival tips” section on how to deal with practical reality, for instance:
I highly recommend arming yourself with a copy of these questions, provided by Dr. Putrino in chapter 6, at your appointments with health care providers:
- “What is your differential diagnosis for my condition?”
- “What is the evidence for and against that differential?”
- “How have you ruled these differential diagnoses out?”
- “Could you please document that?”
Asking for a differential diagnosis will encourage the provider to engage in both a deeper thought process and investigation into your symptoms.
Sample tips from other chapters:
- You’ll need a pulse oximeter (“pulse ox”)). You can get one on Amazon for $10.
- A common dysautonomia symptom is POTS – your heart races when you stand up. A formal diagnosis involves a “tilt table” which requires getting to a doctor, but you pre-diagnose can do a “poor man’s tilt table” test using your pulse ox. (Film it, to show the docs).
- Seek support from others: People with chronic diseases often do better when they can talk to another person about it. (e.g. MEAction’s Long Covid Facebook Group, Body Politic)
- A whole chapter on understanding and influencing what questions researchers are pursuing
Author Fiona Lowenstein
Lowenstein is no ordinary 28 year old: in addition to their writing credentials, they have deep experience in self-actualization, patient empowerment and community organizing. From their About page:
In 2018, I started the queer feminist wellness collective and events series, Body Politic, which is now a grassroots patient-led health justice organization. In 2020, I co-founded the Body Politic COVID-19 Support Group on Slack which serves over 11K Covid-19 patients across the globe, and has been featured in The New York Times, Forbes, The Atlantic, The Washington Post, and Women’s Health, among numerous other outlets.
This is what we call an activist. Read her New York Times essay in March 2020, I’m 26. Coronavirus Sent Me to the Hospital. And at the FHIR DevDays conference in Nov 2020, we chose Body Politic member Hannah Wei as our patient speaker, telling her long COVID story (13 min video).
By the way, running a huge Slack community is a big undertaking, and they need money.
One final note …
The perspectives above aren’t only the opinion of uppity patients. Lowenstein may be 28, but the November issue of AARP Bulletin has a big boxed sidebar warning about the reality and, sometimes, severity of long COVID. Excerpts:
- Why should I worry? One study found that nearly half had to reduce their everyday workload and almost one-quarter couldn’t work at all.
- Long COVID has no cure. Treatment involves helping people adjust to their life as it is now.
- Some people improve, others plateau and adjust, and some get worse and suffer greatly because they can hardly recognize themselves anymore.
- Diagnosis can be a struggle because there is no test … You should feel heard by your care team.
The AARP piece ends with this advice: “The best defense against long COVID: doing everything you can to avoid catching [COVID] in the first place.”
p.s. Employers should have an interest in volume purchases of this book: this August article says the average Long COVID case now costs more than the average diabetes patient. Informing and empowering people to cope more effectively makes sense, especially since “the system” doesn’t know how to deal with it.