The first thing Summer Ash remembers thinking after waking up in the hospital following her 2012 heart surgery is, “Fuck.”
The searing pain in her chest was like nothing she’d ever experienced in her then-36 years, she tells Inverse.
They didn’t prescribe enough pain medication, because her doctor had gone home for the night, and the nurses weren’t able to increase it. Ash says that the nurse put her into a reclining position, which excruciatingly pulled on her incision site. Compounding the hellish experience was the loneliness: Visiting hours were over, and Ash spent that night awake, scared, and alone.
It was so bad that Ash has medical PTSD from the experience — though she wasn’t formally diagnosed until two years after the surgery.
She’s far from alone: Studies show that, even before the COVID-19 pandemic, people who have had major surgery, ICU stays, or other serious hospitalizations have PTSD at as much as five times the rate of the general population.
Like Ash, I wasn’t formally diagnosed with PTSD until several years after my surgery. It took me even longer to accept that medical PTSD was real and something I had.
In 2006, I was admitted to the hospital with stomach pains and subsequently had two emergency surgeries. In the first, doctors removed a small section of my large intestine. Complications from the first surgery resulted in sepsis; I was packed in ice to bring my fever down and rushed into a second surgery. I spent nearly a month in the hospital.
After that, every interaction in a medical setting was emotionally and sometimes even physically impossible for me to handle.
What is medical PTSD?
The belief that trauma is the result of an external event — a roadside bomb, a violent attack, a natural disaster — is common, Davis Reiss, a psychiatrist and trauma expert, tells Inverse because that’s how it used to be defined.
“The old definition was that you had to be either directly exposed or observe a life-threatening event or trauma,” he says. “But when you really look at the process [of trauma], it's anything that creates anything that triggers an autonomic response of ‘fight or flight.’”
The “fight or flight” response occurs when a person perceives themselves or others to be in danger and, in response, the body releases a rush of hormones — like cortisol and adrenaline — and slows down other routine processes, like digestion. It is an evolutionarily-wired process to help us escape or conquer threats.
PTSD occurs when, after the frightening experience is over, the body continues its fight or flight response, or produces it in hypersensitive ways.
When it comes to medical PTSD, the traumatic experience is a medical event, Sacha McBain, a clinical psychologist and associate director for physical trauma recovery at the University of Arkansas for Medical Sciences, tells Inverse.
“I think the thing that's unique about [medical PTSD] is that it's different from purely external trauma,” she explains. “The ongoing threat is within the body, it’s something that we can't get away from.”
“While the traumas can obviously come from procedures, surgeries, hospitalizations, the fundamental source of those experiences is your own body,” Tiffany Taft, a psychiatrist and Assistant Professor at Northwestern University School of Medicine, tells Inverse, contrasting it with other types of trauma. “When the war ends, the crime is done. If I got assaulted here in Chicago, I could move if I felt unsafe, which would give me a feeling of control over my environment.”
Taft — who has Crohn’s Disease — says that many of her patients have medical PTSD from their experiences with living with inflammatory bowel disease.
“With chronic conditions like Crohn's and ulcerative colitis, it has a mind of its own,” she says. “So patients who have it feel like they could find themselves back in a hospital or emergency room at any moment. They can’t escape it.”
“The other thing that's really important about Medical PTSD is that it’s enacted within the system of care itself,” McBain adds. “So it's something that's happening intrapersonally — something that's happening within you as an individual — but it's also interpersonal, it’s happening within the context of relationships and structures and systems.”
What are some common risk factors for developing medical PTSD?
While a huge range of medical events can result in medical PTSD, research shows that some scenarios are more likely to result in PTSD than others. Medical conditions or events strongly associated with PTSD include invasive surgeries, cardiac disease, stays in Intensive Care Units, pregnancy loss, childbirth, cancer, inflammatory bowel disease, HIV/AIDS, and Covid-19.
But one of the biggest predictors of developing PTSD after a medical event is a previous history of trauma.
“In terms of pre-trauma risk, we know having a pre-existing trauma history is a significant risk factor in developing PTSD after a medical event,” McBain says. “People who have marginalized or oppressed identities and have been exposed to systems of racism and oppression, that’s been shown to increase risk.”
Another risk factor for patients is a lack of clearly communicated information and a lack of trust in the clinician.
Ash says her heart surgeon gave her unrealistic expectations about what her recovery would be like.
“He said, ‘You're young; you'll bounce back.’ He made it seem like if I did the things I was supposed to do, every day would be better than the day before,” she explains. “And that wasn’t the case.”
Complications, the length of stay, and medical bills can also contribute to developing PTSD following a medical event.
Mimi Cabral-Martin was in a car accident that nearly killed her when she was 21: The impact of the crash caused her intestines to split, and doctors had to remove part of it. But, though her experience in the hospital seven years ago was traumatic, getting appropriate medical care — and having it covered — in the years since has further contributed to her PTSD.
“It has been a major struggle with doctors and nurses post-hospitalization,” Cabral-Martin, who is Black, tells Inverse. “I am still fighting for medical coverage.” For example, she says, getting worker’s compensation has been a struggle.
“It's horrible being denied something that a worker’s comp doctor has stated ‘won't get better,’” she says. “I suffer from chronic neck and back pain from the impact, digestive issues, stiffness in lower back, limited range of motion in my neck, and early arthritis in my spine, to name a few. Lifting up my shirt to my stomach and showing my scar to doctors and professionals has helped me ‘prove’ the severity, but it shouldn't have to get to that in order for me to be taken seriously.”
Studies repeatedly show that Black patients’ pain routinely goes ignored in medical settings. For instance, a 2015 study found that Black and Hispanic patients are 22 percent less likely to receive pain medication for acute abdominal pain than their white counterparts. Women of all races have similar issues: A 2008 study found that women arriving at the Emergency Department with acute abdominal pain have to wait for an average of 16 more minutes than men for pain relief.
All of these scenarios can contribute to medical PTSD.
Families of patients are also susceptible to developing medical PTSD, Tim Amass, a physician and professor of Pulmonary Sciences and Critical care at the University of Colorado Medical School, tells Inverse.
Last April, Amass, and his colleagues published a study in JAMA showing that, during the pandemic, instances of PTSD among family members of patients in the ICU nearly doubled compared to pre-pandemic. Instances of PTSD were highest in women and family members of Hispanic descent.
“Visitation restrictions really played a role in this, I think,” Amass says. “I get it, it had to happen. But this study shows there are real consequences to that.”
The lesson extends beyond the pandemic, he adds.
“Whether there’s a pandemic or not, people who work multiple jobs or are single parents or who live in a different place may not be able to suddenly show up to the ICU,” he explains. “And this study shows that people who are excluded from the bedside are more likely to develop PTSD as a result.”
To trauma expert Reiss, it makes sense that family members of people with serious medical conditions would develop PTSD.
“In the ICU or really any hospital setting, you’re still experiencing that sense of helplessness and fear, even if you’re not the patient,” he says.
What triggers the symptoms of medical PTSD?
Several months after I was released from the hospital, I was in a different doctor’s office getting an allergy test and suddenly dissolved into tears and couldn’t stop shaking.
My reaction was deeply confusing to me, but, according to Reiss, it is actually quite characteristic of PTSD.
“What's going on emotionally isn't always right there in consciousness,” he says. “You may not feel uncertain or scared at the time, you may have confidence in the doctors and the nurses, and know what’s going to happen. But on an emotional basis, your body is reacting to the uncertainty.”
“And then you can disassociate — where what the body's doing and what the mind is experiencing aren't aligned,” he adds. “That's part of the fight or flight response: keeping emotions out and just focusing on surviving. ”
In addition to physical sensations, healthcare settings — like hospitals and doctor’s offices — can be extremely triggering for people with medical PTSD.
Cabral-Martin hesitated to visit loved ones in the hospital, even pre-Covid because simply seeing the environment would cause her to start bawling.
“It's like I associate all hospital visits with worst-case scenarios and near-death experiences because of mine,” she says.
“My best friend once face-timed me from the hospital, and once I saw the IV drip and heart monitor in the background, I had a mini panic attack,” she added. “Before he could even finish explaining that it was all going to work out and that he was fine — my body literally felt heavy, my chest was tight... my heart was racing, and my scar actually tingled.”
But even outside medical settings, smells and other sensory stimulations can be extremely triggering.
“A lot of times people will say, ‘I wasn’t even thinking about [my hospitalization]; I wasn’t even in a hospital.,” Northwestern’s Taft says of her patients. “And I’ll ask, ‘what did you smell? Hand sanitizer? Alcohol wipes?’ And that will be it.”
Smells are particularly evocative, she says, because the olfactory bulbs are so close to the amygdala and hippocampus, two areas of the brain strongly associated with emotion and memory.
What is the best way to live with medical PTSD?
It’s extremely common for people with medical PTSD to either avoid medical treatment or be hypervigilant about it, experts say.
“People will often wait until the absolute last minute to show up to the doctor,” Taft says. “They won’t report symptoms or follow up because they're afraid to find out what's going on.”
That, she notes, is dangerous.
“They don't want another traumatic procedure or hospitalization, so they avoid avoid avoid,” she explains. “Then, when it gets really bad, they show up, and it’s almost like a self-fulfilling prophecy; it may not have been so bad if they had gone in earlier.”
Some people have the opposite reaction.
“The flip side of that is people feeling so anxious that they cause a lot of healthcare use,” Taft explains. “People who are in the ER five times a week because they're terrified of things getting worse and [ending] back up in the hospital,” she adds.
Other well-known symptoms of PTSD — like hypervigilance, sensitivity to noise, exhaustion, sleeplessness, and irritability — can be present in medical PTSD patients as well.
Ash has experienced many of them.
“I feel like I’m constantly hyper-vigilant, which is just exhausting,” she says. “It can also make me short-tempered and really reactive to noises. If anything catches me off guard, like trucks idling or really loud bass in music, it just becomes too much.”
“My brain can’t tell what’s a threat and what’s not,” she explains.
And, like other kinds of PTSD, one way many people cope in the wake of trauma is with drug and alcohol misuse. A 2018 study of survivors of major medical trauma found in the year following the event, 45 percent of survivors met the criteria for PTSD, and 26 percent reported “harmful alcohol use.”
Can you prevent medical PTSD?
The University of Colorado’s Amass hopes the pandemic can help make medical professionals aware of what contributes to PTSD following a medical incident, whether they’re dealing with a patient or the loved one of a patient.
“If you’re a loved one and the doctor or nurse says to you, ‘hey, here’s my email address, send a picture of the family, and I’ll put it up by their bed,’ you’re going to think, ‘okay, I can trust this person because they care. That’s part one,” he says.
The second part is for medical professionals to understand that people who have gone through serious medical events — as well as their loved ones — could well develop PTSD as a result.
“As a doctor, if you have a person in front of you who had an experience with Covid or an ICU or their loved one did, you should really be attentive to their mental health,” Amass explains.
Medical PTSD likely can’t be completely eliminated: There are inherently traumatic things about some surgeries and medical issues.
For instance, in Taft’s study of people with inflammatory bowel disease, one of the most traumatizing experiences for patients was the administration of a nasogastric (NG) tube, which is commonly administered with bowel obstructions and other gastric issues.
Patients in Taft’s study describe the NG tube as “torture,” as they make it excruciating to move or talk. (I had one for two weeks and ended up with a bedsore as a result. It was a nightmare, but it was vital to saving my life.)
But despite the potential for even life-saving procedures to cause other harm, none of the experts Inverse spoke to believe that doctors and nurses are broadly aware of how real and common medical PTSD is.
“The simplest thing would be educating healthcare team members,” Taft says. “Encourage them to ask [patients] not just about their physical health but their mental health. Ask if [patients] need someone to come by and talk to you,” Taft says.
“If not, then just even a minute of a physician going, ‘Right, I can understand why this is really scary. Do you need more explanation?’ It doesn’t have to be a 20-minute therapy session,” she adds. “I think a lot of times they’re worried about their schedule, thinking, ‘I don’t want to get sucked into a 20-minute conversation about feelings.’ So they just ignore it. That’s not a good approach.”
Amass believes changing visiting hours so that patients and loved ones can spend more time together would also help reduce PTSD following medical events because it makes the loved one feel more involved and the patient less alone.
Ash says in many ways, her heart surgery and subsequent PTSD have made her a more empathetic person. “I have a different threshold for what's worth getting upset over now. I feel like I have a greater tolerance for things, or I'm just better able to brush them off,” she says. “But I can't express any gratitude for having those qualities now because of how I got them.”
