Sick of Silence

Long COVID patients join historic fight for medical equity.

Are we done talking about COVID yet? For almost 18 million Americans, the pandemic hasn’t ended. While the rest of us were able to move on from our COVID infections, millions of people never got better. Their illness has dragged on for weeks, months, even years in some cases. No one knows why.

Post-acute COVID-19 syndrome — aka “long-COVID” – is very real and mysterious condition marked by lingering symptoms ranging from annoying to alarming to debilitating: chronic pain, exhaustion, shortness of breath, heart palpitations, nausea, insomnia, “brain fog.” More than 200 afflictions (and counting).

Roughly three out of ten people who catch COVID experience some sort of long-COVID, and about one in ten are currently suffering from it. Millions are so sick they can’t work – amounting to $168 billion of lost income per year in the US.  Long-COVID strikes all ages, but tends to hit people in their peak earning years, ages 39 to 50.

What’s worse, of course, is the toll long-COVID often takes on families and relationships. Symptoms are largely subjective and not outwardly obvious, so they’re easily disregarded and suffered in silence. Our society doesn’t have language to explain how a real physical illness can look so much like a mental health issue. Long-COVID breeds shame, blame, frustration, and hopelessness.

Despite all the damage it’s causing, funding and research into better prevention, diagnostics, and treatment still lags. Part of this is politics: a large number of Americans still believe COVID was a hoax, and the rest of us are sick of arguing with them. Lawmakers can read the room, and are eager to close this ugly chapter in our lives.

In addition to partisan tensions, pervading attitudes on long-COVID reflect troubling biases likely familiar to patients with other complex, long-term disorders that defy clear scientific explanation, like Lyme disease, fibromyalgia, ME/CFS, and endometriosis. Welcome to the Women’s Health Gap!

TRUE STORY: Women are 22% more likely to develop long-COVID than men, unless a woman’s under 50 in which case her chance is FIVE TIMES greater than her male counterpart. It tends to be more severe in women, too, you’d think doctors would be looking for hormonal connections, right?

Plot twist! Congress prefers to fund a sluggish N.I.H. program called RECOVER that’s been accused of framing long-COVID as something to be overcome by diet, exercise, and personal grit. Seriously?

This year, the federal government committed another $500 million towards efforts that have had little results and less accountability. Compare that to H.I.V., a disease with an effective treatment already that gets about $3 billion per year for ongoing research. Such disparity seems all the more glaring when you consider 7% of Americans have long-COVID vs. 0.3% with H.I.V. (of whom about 80% are male).

To be clear, both these conditions affect all genders, and both deserve adequate funding. But there’s insult on top of injury here. Significantly more women than men get long-COVID, but most studies are still institutionally skewed to male bodies – even lab mice are male!

Sorry, ladies, female sex hormones create an inconvenient wrinkle in standardized studies. It’s much simpler and cheaper to leave our unique biology out of the equation, entirely. And we’ve suffered greatly because of it – we might live longer than men, but more of us by far can expect to suffer a debilitating illness in our lifetime.

And when we do get sick, doctors often don’t believe us because they’re not trained to see sex-based differences. As a result, they’ll often disregard valid symptoms that fall outside the expected “norm”, even blaming a patient’s weight, age, or mental state. Such medical gaslighting can lead to critical delays in testing, therapies, and specialist referrals.

Worse for everyone, it erodes public trust in healthcare, and creates a vacuum for misinformation that harms us all. The good news is, women talk.

Social media has been extremely validating for many long-COVID sufferers and also countless other individuals with mystifying neurological, inflammatory, and/or autoimmune disorders that defy treatment. From Facebook to TikTok, women have been building their own platforms for sharing stories, comparing notes, creating awareness, and even organizing for funding and policy change.

In East Falls, a local movie screening has grown into a community celebration that breaks the mold for women’s wellness fests. “Beyond the Belt” features the NW Philly premiere of Shannon Cohn’s award-winning documentary about endometriosis, and how it highlights widespread bias and inequality in women’s healthcare. Panel discussion and Q&A including patients and healthcare providers.

“I want everyone to have a great time, but it will be hard topic for some people and the most important element is that this is a supportive event that focuses on communing with one another, creating conversations and providing resources — all while having a good time,” said Justine Bacon Sabalski, one of the event’s coordinators.

✅ ADVOCACY: @COVIDLongHaulers, and r/covidlonghaulers, and  and the podcast Living with Long COVID.

⚕️TREATMENT: Both Penn Medicine and Temple Health have opened Post-COVID Recovery Clinics, specializing in multi-faceted supportive care.

🚫 PREVENTION: The best way to avoid long-COVID is to not get COVID in the first place. Boosters and vaccines are still free for Philadelphians over 6 months of age. See for a list of providers.

🔬 WEIRD SCIENCE – New research identifies four measurable markers in long-COVID patients, showing it affects stress hormones and immune response, causes inflammation, and re-activates dormant viruses like Epstein-Barr, herpes, and VSV (chicken pox). While this evidence provides proof positive that long-COVID is indeed a real disease, these clues only deepen the medical mystery for now. 🕵️

🥊BELOW THE BELT – Fighting gender bias with education, advocacy, and love❤️
Sunday June 2 (4pm – 8pm) at The Fallser Club, 3721 Midvale Avenue | $25 (suggested donation)

An event centered around “Below the Belt,” an eye-opening 50-minute film that puts a face on galling shortcomings in women’s healthcare, through the lens of endometriosis, a disease affecting 1 in 9 women. Panel discussion includes patients and medical professionals, and features updates on the latest research and options. With mood music, positive energy, and a vibrant mix of vendors and resources (including long-COVID resources). This event is a safe space for all women and people with uteruses, and allies. TIX:

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