Kate Porter and Ghenya Grondin both contracted COVID-19 in March 2020. As others recovered from the virus, they continued to have fevers for six to eight months straight, and two years later, still suffer from fatigue, memory issues, breathing problems and more.
Porter and Grondin joined Boston Public Radio to talk about how long COVID-19 has upended their lives and how they have found community among fellow patients.
Porter, who first got COVID-19 at 35, said she has had around 55 different symptoms on and off in the past two years. Currently, she has fatigue and shortness of breath, and can no longer play sports she used to play.
“I've been fortunate that a lot of them have subsided, but new ones are always kind of coming up,” Porter said. “I have not had one single day where I've not been in some sort of discomfort or pain.”
Meanwhile, Grondin, 43, started having seizures, had surgery for an aneurysm, began struggling with memory and shortness of breath and has lost some function in her legs and hands. “I got sick and I never got better,” Grondin said.
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Both women live in the Boston area and said they struggled to get doctors and peers to take them seriously, especially in early 2020 when knowledge about long COVID was less widespread.
“In the beginning, it was very difficult to get care,” Grondin said. “There was a lot of gaslighting from providers. There was providers that would say, ‘No, those symptoms can’t be caused by COVID.”’
Especially in 2020, so much remained unknown. “Is this the rest of my life?” Porter recalled asking herself. “I just didn’t know if I’d ever get better. I knew that doctors have no idea what they're doing.”
Porter, who works in digital marketing, used her skills to start a website called C19RecoveryAwareness.com, providing resources to people suffering from long COVID. After she was interviewed for a story about long COVID, the response was overwhelming.
“I received hundreds of desperate and relieved messages from people all around the world,” Porter said. “They were saying, ‘I'm in tears. I thought I was alone. ... My doctors, my family doesn’t believe me. I don’t know what to do.’”
Both women began to find relief when they finally saw doctors and researchers who believed them. But it took a while — Grondin waited nine months to see a specialist at MGH.
Beyond battling their lasting symptoms, long COVID has upended their family lives. Grondin could no longer work as a postpartum doula, because she did have the strength to hold babies and did not feel capable of taking care of recent mothers when she needed help herself. At home, her husband took over childcare duties while working full time remotely.
“It was a huge loss of self not being able to do my profession, but also to feel so horrible and not be able to care for my children as well,” Grondin said. “I was the person that remembered every single birthday and every relative’s special occasion.”
Porter has been navigating long COVID as a single mom. At first, her daughter, who was 11 when the two first got sick, was making her own dinners.
“I absolutely struggled,” Porter said. “I felt bad every night and day I was in bed and she [her daughter] just was such a trooper, but she was affected by it, for sure.”
Then came the financial strain of long COVID. Porter said she was lucky to have comprehensive benefits through her work, but said that navigating her insurance company often felt like its own full-time job.
“It was really difficult to obtain long-term disability benefits from the insurance company,” Porter said. “It was brutal. Here I am, just very, very ill, just trying to survive day in and day out, and, I was getting denied for long-term benefits.”
Porter was forced to go on unpaid medical leave until she wrote a desperate letter to her company’s president, who supported her.
Following Grondin’s loss of income from her work as a doula, her family bought a candy truck and started Sweet Ride Candy Co., both to bring in money and positivity to their lives.
“We decided that it was going to be a family business,” Grondin said. “It was kind of a ray of sunshine for our family. After a really hard time, it was meant to be joyous and happy.”
As mask mandates end and the omicron surge subsides, Grondin and Porter have mixed feelings about the state of pandemic precautions. They want a return to normal, but Porter said she wants people to still acknowledge the persisting risk that exists for many people. Grondin said she would have liked to see the school mask mandate stay in place until the end of the year.
But both women maintain hope as researchers learn more about the potential long-lasting effects of the virus. Porter said she has had some success with an HIV medication, though she still has some residual symptoms.
“Certain symptoms have gotten better with various treatments,” Grondin said. “But I have to be honest that I do feel like this is going to be, to a certain degree, the rest of my life.”
