In January 2020, Tara became one of the first people in Australia to contract the coronavirus, after bumping into neighbours who had just returned from Wuhan. There was no information about the virus being in the country and no option to get tested. When she recovered, she decided to put the experience behind her. “I thought, well this is a crazy thing that happened and I’m really lucky to have made it through unscathed,” she tells Refinery29. She started running again and continued studying her Masters in Business Administration.
Three months later, Tara woke up feeling sick and exhausted — only this time, she didn’t get better. “There were days when I couldn’t get out of bed or I’d make it out of bed only to drag myself to the couch. I had extreme fatigue, chest pain, muscle pain, headaches, palpitations. It felt like my organs were on fire,” she shares. A year after her symptoms started, Tara’s respiratory issues became so severe that her lips turned blue and she was forced to go to the Emergency Room. When she explained that she’d had Covid to the on-call doctor, she was met with scepticism. The doctor ran some basic tests, implied that her symptoms were related to anxiety, and sent her home. “I was distraught, she says. “I was terrified I was not going to survive but I couldn’t cry, because every time I breathed, it felt like I was being stabbed.
Lauren Nichols knows what it’s like to be patient zero, as the first person to get long Covid in Boston, Massachusetts. Lauren is now Vice President of Body Politic, a global support group for 20,000 patients.
“I cannot tell you how many women in our group have been sent to the ER with serious cardiovascular issues, only to be told it’s all in their head,” she tells Refinery29. “What we see with our female members is this psychologising that doesn’t happen as frequently with men.”
It’s been two years since Lauren’s infection turned into a complex set of chronic symptoms. When she started experiencing tremors, seizures and daily migraines, she sought out a neurologist, who told her the migraines were because she was menstruating.
“I kind of laughed because I’ve been menstruating since I was ten,” she says. “I started explaining how I manage a long-Covid support group, and we see lots of people with neurological issues. But the more educated I was, the less he wanted to help me.”
Research estimates that 10–30% of people who contract coronavirus will be affected by long Covid, also known as post-COVID-19 condition, defined as ongoing symptoms lasting two months or more. Being double vaccinated reduces your risk by half, symptoms vary in intensity and many people do improve with time. But a portion of Covid long-haulers go on to develop severe and prolonged illness.
Young and middle-aged women appear to be most at risk, with twice as many women as men reported to have long Covid. It’s thought that the robust female immune system makes women more likely to survive infection, while predisposing them to chronic inflammation and immune dysregulation. The same mechanism and a more pronounced gender skew can be seen in the closely related disease, Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), where up to 80% of patients are female.
When systems break down
Dr Amy Proal is a microbiologist who directs long Covid research at the PolyBio Foundation in the United States. She believes that four factors contribute to women being gaslighted by medicine. One, in most of these conditions patients don’t look sick, making it hard to be believed. Two, diseases affecting women attract significantly less research funding, and the less funding a disease gets, the less we know about it. Three, standard blood tests only allow physicians to see a tiny fraction of what’s happening in the human body. And four, our medical system is structured to reward doctors for short consults, giving them no opportunity to solve complex illness.
We need to see this for the emergency it is. There are huge numbers of patients getting ill with long Covid around the world. We have to rapidly change the way we think about these conditions.
DR AMY PROAL
“So, you look healthy, your symptoms don’t match up with medical textbooks, all your tests come back normal and now it’s time to move on to the next patient,” explains Dr Proal.
The team at PolyBio studies how viral, bacterial, and fungal pathogens trigger chronic disease. “We don’t see the development of chronic symptoms following an acute infection as new information at all. It’s more a case of diseases like ME/CFS being underfunded, understudied and largely ignored,” she says. She believes now is the time for systemic change. “We need to see this for the emergency it is. There are huge numbers of patients getting ill with long Covid around the world. We have to rapidly change the way we think about these conditions.”
Dr Heidi Nicholl is a Director at Open Medicine Foundation which facilitates research into complex disease. She agrees that the core issues are systemic. “I rarely meet doctors who have anything but a desire to help people; the problem is with the way research is funded,” she tells Refinery29.
The chronic compounding effect
As a disabled medical researcher based in Sydney, Anna Liza Kretzschmar wants to understand why women are impacted by these stigmatised conditions. Her interest is personal: after being diagnosed with ME/CFS and fibromyalgia, she started experiencing severe stomach pain. Her gynaecologist’s response was that she needed to learn to live with her chronic conditions, but Anna Liza was convinced this pain was different. “It felt like being eviscerated,” she shares. “Like someone was ripping a knife up the right side of my abdomen.”
For years, she went to the ER during acute attacks and received no answers. Eventually, Anna Liza tracked down a specialist who diagnosed her with stage four endometriosis. It took several hours of surgery to remove all the endometrial tissue in her reproductive system. “When you have one stigmatised condition, doctors blame any new problem on that disease,” she says. “They stop seeing you as a human, [as] worthy of care.”
Lauren also noted the connection between long Covid and endometriosis, described as chronic overlapping pain conditions. “One huge frustration from the Body Politic community is the lack of discussion about how long Covid affects the female reproductive system,” she says. She sees thousands of women in agonising pain every month because long Covid has disrupted their menstrual cycle. “We see women developing endometriosis or premenstrual dysphoric disorder or experiencing significant pain during sex. There is a disconnect between the impact this is having on women and the level of interest from the research community.”
Fighting a really big fight
Two years from when she was first diagnosed, Tara’s health has improved but she remains frustrated at the way Australia is sticking its head in the sand. “We’re doing everything wrong when it comes to long Covid,” she says. “We need more awareness, more education, more patient involvement. Physicians are treating patients without learning about post-exertion malaise or the importance of pacing. These are the same mistakes we made in the past with ME/CFS. It’s a disgrace.”’
With the country’s political leaders remaining silent on long Covid, Lauren’s advice for new patients is to trust your body, learn to advocate for yourself and be aware of medicine’s blind spots. She shares that understanding the disability justice movement has given her strength. “When you see how massive and systemic this problem is, it wakes you up to the reality that you’re fighting a really big fight and you are not in it alone.”
Natalia Hodgins is a writer, speaker and disability advocate whose work covers health equity, disability justice and gender issues.
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