What You Need to Know About Medical Trauma
If you experience grief or anxiety after surviving a major health crisis or being treated poorly by medical staff, your feelings are real and you’re not alone.
Emily Cardwell was 34 when she was rushed into emergency open heart surgery. It was December of 2012. Several months earlier, she’d had a fluid-delivering device called a port inserted in her heart to help manage a blood-flow condition called postural orthostatic tachycardia syndrome (POTS). Cardwell, a nurse who was finishing her master’s degree in nursing education, says she knew something was wrong with the port in October when she began experiencing symptoms such as extreme shortness of breath, low oxygen levels, and swelling. But “my doctors—my cardiologist, multiple ER doctors—all dismissed me,” Cardwell says. “They said: ‘You have POTS; we expect that you’ll feel sick.” Cardwell requested a copy of her medical chart and was shocked to see patient is anxious written several times—in one case, underlined and in all capital letters.
Cardwell’s symptoms were not, in fact, due to anxiety, but rather the result of several blood clots, one the size of an egg, which had formed from improper port placement, and were only discovered when Cardwell herself asked for an echocardiogram—an ultrasound of the heart. When she woke from surgery in massive pain, she remembers a male nurse asking if she was an illegal drug user “or else I wouldn’t be feeling this horrible pain.”
The experience left Cardwell understandably wary of her fellow healthcare providers, so much so that this past fall, when she developed concerning heart symptoms, she stayed home and waited for the weekend to pass before calling her cardiologist rather than visiting the ER. (Fortunately, her symptoms resolved on their own.) Her 2012 surgery and the month-long hospital stay that followed instilled in her the belief that “I can never trust anyone medical to do their job right. I was gaslit by all my providers, right up until I was almost dead,” she says. “I now have no confidence I will have positive outcomes in that setting.” To this day, Cardwell experiences extreme anxiety when seeing doctors. “I panic, my heart rate and blood pressure go up. The extensive physical and emotional suffering I experienced, combined with the loss of autonomy, has left me frightened of just the thought of having to see a doctor.”
Fortunately, the vast majority of medical experiences are positive ones, sometimes with truly heroic efforts by doctors and nurses to save a patient's life. But when things go wrong, it can be emotionally devastating. Now 43, Cardwell works as a volunteer nurse educator in Louisville, KY, and is training to work as a psychiatric-mental health nurse practitioner. Her goal: to help patients who, like her, have experienced medical trauma.
What Is Medical Trauma?
Though not a term you often hear, medical trauma is a very real phenomenon that can result from a negative experience within the medical setting that causes “powerful psychological impacts due to the patient’s unique interpretation of the event,” says Michelle Flaum, Ed.D., an associate professor of counseling at Xavier University in Cincinnati, OH, a counselor in private practice, and an expert on medical trauma. In some instances, like with Cardwell, being treated poorly by healthcare providers can be the catalyst; in other cases, surviving a life-threatening medical event, injury, or illness, or simply being on the receiving end of a serious diagnosis can shock your system in a way that the brain and body interpret as trauma.
Medical trauma can take the form of an acute stress response—anxiety, fearfulness, disturbing thoughts or flashbacks, sleep disturbances—that lasts a few weeks. Untreated, it can progress to longer-lasting generalized anxiety, depression, grief, and more. Two prime examples of medical trauma playing out in real life: A woman who, post-mastectomy, has recurring dreams about having her natural breast back, only to lose it again; and a former stroke patient who feels panicky when driving by the hospital where he was treated, even if he’s simply heading to work or the gym.
Just like other sources of trauma, the psychological and physical fallout of medical trauma can include intense fear, accelerated heart rate, high blood pressure, and/or sweating in the presence of people or environments that remind them of upsetting past medical experiences (hospital gowns, bright lights; certain odors; sounds from medical equipment).
Sofia F. Garcia, Ph.D., a clinical health psychologist at Chicago’s Robert H. Lurie Comprehensive Cancer Center of Northwestern University, says that medical trauma is not unlike the type of trauma that can happen to a person who has suffered abuse, or a service member after a combat tour. In fact, medical trauma can devolve into medical Post-Traumatic Stress Disorder (PTSD), a longer-lasting condition where one continues to re-experience the traumatic event via flashbacks or nightmares; avoids people or settings that remind them of the initial medical event; and experiences “a high level of ongoing distress and life impairment,” per the Anxiety & Depression Association of America. (PTSD of any sort isn’t typically diagnosed until the symptoms have lasted longer than a month, Flaum says.)
One of medical trauma’s key distinguishing symptoms is hypervigilance, meaning “you’re constantly watching for things,” Garcia says. “In the case of cancer, you may be scanning for symptoms, interpreting pain or other sensations as signs of something” insidious. Hypervigilance also includes intrusive thoughts and memories or nightmares (of beeping monitors, or the moment one received a devastating diagnosis, for example) and withdrawing from others or avoiding doctors, like what Cardwell described doing when she recently experienced heart symptoms but refused to go the ER. People with medical trauma or medical PTSD “will try to avoid the things that remind them of the traumatic event because they are overwhelmed by negative emotions,” Garcia notes, not realizing that “long-term avoidance maintains or increases anxiety.” Conversely, some individuals may experience a sort of emotional numbing similar to what is seen in depression.
Lauren Krouse is all too familiar with this sort of traumatic stress response. As a child, Krouse developed a rare medical condition called lichen sclerosus that causes patches of white, extremely thin skin, usually in the genital region. These patches are prone to tearing and often cause pain, itching, bleeding, and scarring. Some of her earliest memories were “spreading my legs for male doctors and having to use multiple ointments and special soaps to avoid irritating my private area.” She often cried from the pain of using the washroom and, because the symptoms resembled possible signs of sexual abuse, her parents were investigated by Child Protective Services.
The 28-year-old freelance health journalist from Bridgewater, VA, says she didn’t immediately tie these experiences with the dread, nightmares (of a male doctor hovering above her, surrounded by a halo of artificial light), and even panic attacks she began experiencing in her late teens whenever she needed to visit a doctor. “I’d start crying even when the doctor was just asking me basic questions like: ‘Tell me why you’ve come in today,’” she recalls.
The experience of being diagnosed with and living through COVID-19 (or watching a loved one suffer or even die from the disease) can also prime a person for medical trauma, or what some medical experts have termed “Post-COVID Stress Disorder.” A third of COVID patients put on ventilators report PTSD symptoms, according to a 2021 UK study, and one in five of those admitted to the hospital with COVID but who didn’t require ventilation experienced trauma symptoms such as flashbacks, such as images of intensive-care-unit (ICU) doctors wearing full personal protective equipment or other ICU patients. You don’t even need to contract the virus to feel the traumatic after-effects; in a June 2020 study published in the International Journal of Environmental Research and Public Health, researchers wrote: “The pandemic outbreak of an unrecognized infection, with no vaccines or effective medical treatments, such as COVID-19, could be defined as a traumatic experience for its acute and chronic implications at individual and community levels.”
Garcia notes that sometimes the symptoms of medical trauma can be subtle—digestive issues, muscle tension, or sleep problems—and are mistakenly attributed to other sources of illness, Garcia says.
One way traditional traumatic responses and PTSD do differ from the medical kind is that with, say, a car accident or an assault, the threat is external and ends when the event does. With medical trauma, Garcia says, the threats and triggers are often internal, residing within a patient’s body, making it feel even more omnipresent.
Who Develops Medical Trauma?
It’s important to note that medical trauma doesn’t affect everyone who lives through a frightening or significant medical experience. People with a history of anxiety, trauma, or other mental-health concerns are predisposed, as is anyone going though high levels of stress, whether related to work, relationships or personal development. Women are also more at risk, as are people of color, who have a history of “witnessing or hearing stories of medical abuse, and they go into medical systems with a lot of trepidation,” says Charmain Jackman, Ph.D., a licensed psychologist in Boston and founder and CEO of InnoPsych, Inc., an organization dedicated to disrupting racial disparities in mental health. “There’s the worry: ‘Am I going to be treated fairly? Will I be given the best care possible? Are people going to listen to me when I speak?’ And so you go into the situation with a heightened sense of fear.” That fear, combined with a greater likelihood of negative health outcomes across the board (Black women are twice as likely to experience a “near miss” such as cardiac arrest, extreme blood loss, or an aneurysm during pregnancy, for instance, and are three times as likely to die, compared with white women) may serve as a perfect storm for the development of medical trauma.
Flaum herself developed medical trauma and medical PTSD after a harrowing childbirth experience during which she hemorrhaged and almost died. Indeed, emergency caesarean section is a common trigger for medical trauma, as are heart attacks, strokes, cancer and HIV diagnoses, and accidents and events requiring emergency room visits. According to the International Society for Traumatic Stress Studies, about one-third of traumatically injured patients will experience PTSD or depression symptoms post-injury. And per the National Child Traumatic Stress Network, approximately 80% of children and their families will develop a traumatic stress reaction after a life-threatening illness, painful medical procedure, or injury, with smaller numbers (20% to 30% of parents and 15% to 25% of kids) experiencing persistent traumatic stress.
Medical trauma can also set off a cascade of other crises in different areas of life. Relationships can suffer if one member develops depression or anxiety. In the case of trauma related to pregnancy or childbirth, or a medical condition that impacts the genitals, the resulting “hypervigilance and need to protect our bodies can affect our ability to be intimate,” says Flaum.
Krouse experienced this firsthand as a young adult. “I’d sort of dissociate during sex, trying to just get through it," she says. "I would detach from my body. I think it was learned behavior—I had spent so much time trying to physically detach from my body [when the skin condition caused pain] and now sex was painful, and I just wished I didn’t have to be burdened by this.”
Treating Medical Trauma
Fortunately, most people who experience a trauma recover and do well, Garcia says, their reactions improving over weeks or months. Treatments are similar to those used to treat general anxiety, depression, or PTSD. If you are struggling with symptoms you suspect may be related to medical trauma, the first step is reaching out to a mental-health professional—a clinical counselor or social worker, or a psychologist, are good options, especially if they have a background in trauma. (The American Psychological Association can help you find a provider near you.) You can also ask your primary care doctor for a referral. Talk therapy is critical. “If negative feelings and thoughts aren’t improving, or start to worsen, and are interfering with a person’s ability to function or with their quality of life, seeking out professional help from a mental health professional or support group can be an important step toward healing,” Garcia says.
Cardwell was officially diagnosed with PTSD in 2015 and sees a therapist every few weeks via telehealth. Like Krouse, she’s made strides in self-advocacy, which feels empowering but it doesn’t always make the process any easier. “When I see a doctor for the first time, I say: ‘I’ve had some very bad experiences and it’s left me reluctant to get medical care, and you need to know there’s some mistrust there.’ Most doctors are very kind about it.” When anxiety and panic do hit, especially in a medical setting, “I remind myself, ‘This is not the same situation as the emergency heart surgery situation.’ But I’m not perfect at it and I will still avoid care.”
Other treatments include mindfulness-based therapies like deep breathing, meditation, yoga, and tai chi that help connect the mind and body—a link that can feel broken for someone experiencing anxiety, depression, or trauma. These therapies can help calm high levels of physiologic arousal by employing slow, deep breathing. Flaum says some patients find success with a type of therapy called EMDR (Eye Movement Desensitization and Reprocessing), or with Somatic Experiencing, which helps the body release pent-up stress by “gently guiding clients to develop increased tolerance for difficult bodily sensations and suppressed emotions,” per traumahealing.org. Medication may be needed in some cases, as well.
Krouse, who prefers lifestyle and non-pharmacologic therapies, says she has developed coping strategies over the years to deal with the uptick in anxiety that accompanies doctor’s appointments. “I’ve become better at advocating for myself and I let them know that I prefer female doctors to male, and that I’d like to be talked through any procedures.” She also writes down any symptoms she’s been experiencing, “because I know that once the doctor starts asking me, I won’t be able to remember it all, so I can show them the list.” This and other experiences have prompted Cardwell to adjust her nursing career path; instead of working with medically complex adults, as she had originally planned, she now hopes to work in the mental health space. “Patients don’t know help is out there, and providers don’t realize how often this sort of trauma is happening,” she says. “I want to help patients and providers find an alternative to this long-term traumatic relationship.”
- Acute Stress Definition: Johns Hopkins Medicine. (2017.) “Acute Stress Disorder.” hopkinsguides.com/hopkins/view/Johns_Hopkins_Psychiatry_Guide/787067/all/Acute_Stress_Disorder
- PTSD: Anxiety & Depression Association of America. (2017.) “How to Prevent Trauma from Becoming PTSD.” adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/how-prevent-trauma-becoming-ptsd
- Post-COVID Stress Disorder: Psychiatric Times. (2021.) “Post-COVID Stress Disorder: Another Emerging Consequence of the Global Pandemic.” psychiatrictimes.com/view/post-covid-stress-disorder-emerging-consequence-global-pandemic
- A Third of COVID Patients: Cambridge University Press. (2021.) “Post-Traumatic Stress Disorder Symptoms in COVID-19 Survivors: Online Population Survey.” cambridge.org/core/journals/bjpsych-open/article/posttraumatic-stress-disorder-symptoms-in-covid19-survivors-online-population-survey/66F00143472B15757736AE5E3E42E52C
- The Pandemic Outbreak: International Journal of Environmental Research and Public Health. (2020.) “COVID-19 Pandemic in the Italian Population: Validation of a Post-Traumatic Stress Disorder Questionnaire and Prevalence of PTSD Symptomatology.” ncbi.nlm.nih.gov/pmc/articles/PMC7312976/
- Near Miss: American Journal of Managed Care. (2020.) “Racial Disparities Persist in Maternal Morbidity, Mortality and Infant Health.” ajmc.com/view/racial-disparities-persist-in-maternal-morbidity-mortality-and-infant-health
- Three Times as Likely to Die: Centers for Disease Control and Prevention. (2020.) “Pregnancy Mortality Surveillance System.” cdc.gov/reproductivehealth/maternal-mortality/pregnancy-mortality-surveillance-system.htm
- Common Trigger for Medical Trauma: Vistas Online. (2013.) “When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma.” counseling.org/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-.pdf
- International Society for Traumatic Stress Studies: International Society for Traumatic Stress Studies. (2020.) “What is Medical Trauma?” istss.org/ISTSS_Main/media/Documents/Medical-Trauma-Clinician-Fact-Sheet-2.pdf
- Per the National Child Traumatic Stress Network: National Child Traumatic Stress Network. (n.d.) “Pediatric Medical Traumatic Stress.” nctsn.org/sites/default/files/resources//pediatric_toolkit_for_health_care_providers.pdf
- Somatic Experiencing: Somatic Experiencing Trauma Institute. (n.d.) “What Is Somatic Experiencing?” traumahealing.org/about-us/