We Need to Talk About PTSD in People With Past Health Traumas—and How Coronavirus Is Making it Worse
It took Sophie Faulkenberry a few days to figure out exactly why she was so on edge. As news spread about COVID-19 cases in New York, where Faulkenberry lives, the 27-year-old law school student knew it was normal to feel a bit of anxiety—we're all anxious right now—but Faulkenberry's anxiety would spiral into panic. One thing would set her off and suddenly she'd be crying. "I realized, oh, this is PTSD," she says.
On September 23, 2019, Faulkenberry—then, a 26-year-old personal trainer in exquisite health—was diagnosed with cancer. Just over a week later, doctor’s discovered that, more specifically, she had Burkitt lymphoma, an extremely aggressive form of lymphoma. For the five months before her diagnosis, she'd been having mysterious pains—hot, searing, being-branded-with-an iron pains—first in her chest, then in her hip. Doctors, however, kept telling her she’d strained muscles from overzealous workouts (she was a personal trainer, after all). But then, after days of persistent fever and some concerning bloodwork, doctors called for an MRI, just in case. It revealed lesions all over her body. She had to start chemo—fast.
On January 6, 2020, Faulkenberry finished her last round of chemo. She slowly began to come out of the strict quarantine she’d lived under to protect her immune system during chemo—though, she’d soon be back in quarantine, thanks to COVID-19. And while her latest scan showed no signs of lingering cancer, the stress of enduring a major medical trauma has been slower to dissipate.
PTSD related to medical trauma is real—but it's not talked about enough.
Medical trauma resulting in post-traumatic stress disorder (PTSD) is very real and more common than you may realize. "Recent nationally-representative estimates suggest that 6.5 percent of cases of PTSD relate to a life-threatening illness," says Maia Kredentser, a PhD candidate and assistant professor at the University of Manitoba. She adds that as many as 20 percent of patients who go through surgery or an ICU stay report having PTSD afterward.
The effects of PTSD related to medical events can lower a person's quality of life, a 2017 piece published in The Lancet Psychiatry reported. And that piece was published well before a global pandemic was on anyone's radar. Now, with anxiety for the general population at new levels, people like Faulkenberry are struggling to cope.
So much less has been written about medical trauma and PTSD that many people are not even aware of the connection, says Amanda Katchur, PsyD, a Lancaster, Pennsylvania-based psychologist. In part, this is because even the existence of medically related PTSD is somewhat controversial within the PTSD research community, says Kredentser. This is “a result of how we classify an index traumatic event in the Diagnostic and Statistical Manual of Mental Disorders, 5th Edition,” she explains. “According to the DSM-5: A life threatening illness or debilitating medical condition is not necessarily considered a traumatic event. Medical incidents that qualify as traumatic events involve sudden, catastrophic events.” This description means that healthcare professionals may not feel a medical trauma meets the criteria for causing PTSD, and therefore don’t suggest to their patients that perhaps this is what they are dealing with.
This means many people may never get the care they need. Dr. Katchur adds that another factor that can sometimes keep people from getting a proper diagnosis is the fact that medical trauma-related PTSD can show up in a range of ways and time frames. Some people will feel its effects days after a hospital stay. Others may not realize what they're feeling until another health event sends them spiraling.
Furthermore, medical trauma and its resulting after-effects go far beyond just creating anxiety. For some, past health traumas change our view of ourselves. "I think people develop very strong ideas about their bodies form their past health experiences," says Dr. Katchur. If you've had a severe health scare or chronic condition, you may question just how strong your body is now—even if your past health problems have resolved.
In a pandemic, PTSD triggers—especially those related to medical trauma—are everywhere.
Everything about the novel coronavirus is making PTSD worse. "We know that perceived threat and social isolation may exacerbate symptoms of PTSD," says Kredentser. In other words, that buffet of bad news we're consuming while locked away in our houses? It's especially harmful to people suffering from PTSD. Dr. Katchur adds that much of the imagery associated with the pandemic—think hospitals and ventilators and people in masks—can be deeply triggering for folks with past medical traumas. “It reminds them of being in the hospital,” she says, adding that even just seeing hospital imagery on TV news programs can be upsetting.
For Faulkenberry, so far, the masks aren't the problem. Instead, trusting her gut is the issue. She knew months before her diagnosis that something felt wrong. However, when doctors told her she was fine, she listened. All the while, her cancer was growing. "Cancer stripped me of my ability to trust myself and trust in logic and reason," she says. Before cancer, the logical explanation for her chest pain was too many pushups. Logic let her down. Today, Faulkenberry doesn't just feel the ache of a sore throat and think, maybe it's allergies. Instead, she toggles between what an appropriate over and under reaction are, because cancer shattered her previous standards.
Chemotherapy also made Faulkenberry neutropenic, which means she has extremely low white blood cell counts. White blood cells are crucial to fighting off new infections, so she feels anxious about what, exactly, her body will do if she gets COVID-19. Every sore throat and cough now feels ominous. She’s avoiding any unnecessary trips out, and following many of the same protocols on hand washing and mask wearing that she had to follow during cancer treatment—which, again, brings back memories. It’s also just frustrating. “When I finally got to leave my house, I rode the subway for the first time and went back to class for the first time, and then they were like, oh, no, go back inside,” she says.
Then there's all the uncertainty about the future. That's something Minnesota-based writer Doug Mack has been recently struggling with. Mack has Crohn’s disease, a chronic condition that causes inflammation of the gastrointestinal tract. He's been through a series of surgeries, and each time, he felt that this was the time he'd finally get relief. Sometimes he did, only to have debilitating GI distress come roaring back. In 2009, doctors performed an ileostomy, which routed his small intestine out of his abdominal wall. "Since 2009, I haven't had any symptoms, but there's always this specter looming out there," he says.
With a disease like Crohn's, Mack says he always had a mental checklist to track how he was feeling. He knew that if he was a bit nauseous, there were certain things that might help. He also knew what was likely to come next if he didn't address his nausea. That feeling of bodily awareness gave Mack a sense of control. COVID-19 has turned that feeling of control on its head.
"So many people experience this in so many different ways that I don't necessarily know what to look for or how my body would deal with it," he says. "That is kind of hard because the one thing I had in the toolkit was awareness of what was happening with my body." Now, he feels almost like he's back in the early stages of having Crohn's disease, where he had no idea what was coming next and how bad it would be.
Mack is coping by arming himself with information. He emailed his physician to find out if he technically should consider himself high risk. They confirmed that yes, because he takes immunosuppressing drugs, he should be extra careful and consider himself high-risk. He and his wife are both working from home, and they’re avoiding all social interactions. That was a move that paid off when a neighbor came down with the virus. When there isn’t enough info available to comfort him—a real problem with a novel virus—he turns to his other main source of comfort: “I like to play with my kids. That helps put things in perspective; it helps remind me to have strength,” he says.
Help is available for medical-related PTSD, but you may have to be your own advocate.
Dr. Katchur says signs of medical-related PTSD include feeling triggered by images of hospitals or talk of mass casualties. "Having nightmares about past experiences is also a sign of trauma," she adds. If you're finding your anxiety acute enough to interfere with daily life, she suggests reaching out to a mental health professional.
Unfortunately, you may have to do the leg work of bringing it up with your doctor. “It is not common for patients to be provided with information regarding signs and symptoms of PTSD following medical events,” says Kredenster, adding, “and this is often not screened for at follow-up medical appointments.” Still, many mental health professionals are trained to spot symptoms of PTSD from a range of trauma types, says Dr. Katchur.
Recently, Faulkenberry booked an appointment with a therapist. She also reached out to her community. Although Faulkenberry toggles between setting her Instagram to public and private, she recently posted publicly about realizing she was experiencing PTSD. Then, she offered up her private messages as a place where other cancer survivors going through similar things could connect. "Some said, I'm so glad I'm not alone," she says, adding that others expressed frustration at their families not taking their PTSD seriously. That broke Faulkenberry's heart. "I'm lucky, my fiancé and my family have never downplayed my symptoms, so I've never had to deal with convincing people this is serious," she says.
While Faulkenberry does have familial support, she doesn't have all the answers. "If I did, I feel like I'd be coping with this a bit better," she says with a dry laugh. But she did try to respond to every message with the best advice she's got: "Don't be frustrated with yourself for feeling this way and don't push it under the rug," she says, adding, "and allowing yourself to cry and be scared is normal and okay." And finally, perhaps most importantly: You are not alone.
The information in this story is accurate as of press time. However, as the situation surrounding COVID-19 continues to evolve, it's possible that some data have changed since publication. While Health is trying to keep our stories as up-to-date as possible, we also encourage readers to stay informed on news and recommendations for their own communities by using the CDC, WHO, and their local public health department as resources.
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