In 2020, 13 million people had post-traumatic stress disorder. In fact, about 6% of the U.S. population will experience post-traumatic stress disorder, or PTSD, at some time in their lives.(1) Some of these people have medical PTSD (mPTSD), defined as trauma from medical illness and injury.(2) One study from 2018 indicated that 6.5% of people with PTSD have mPTSD — that’s 845,000 people. If they seek healthcare at a rate similar to the rest of the U.S. population, nearly 700,000 will need to see a physician this year.(3)
The reported numbers of people with mPTSD are misleading in that they don’t take into account those whose level of discomfort with the world of medicine fails to rise quite to the level of diagnosable PTSD or whose mPTSD has not yet been recognized for what it is. Also, the official head count omits a frequent source of mPTSD: trauma from treatments and the people who delivered those treatments.
People who have been seriously traumatized by their past medical treatments make up a small but potentially impactful segment of any clinic’s or hospital’s likely patient population.
THE TRAUMA SPECTRUM
The medical world sees itself as an enterprise dedicated to “first, do no harm,” and the people who practice medicine consider themselves to be helping patients, not hurting them. But, what is meant by “harm”? In most cases, it’s defined in terms of whether the treatment makes the presenting illness or injury worse. In other words, if you can’t cure it, at least don’t make it worse.
There are other ways to cause harm, though. Treatment itself can be experienced as “harm.” It can be experienced as violent and personally invasive, even when done perfectly, technically correct. If treatment occurs at a less optimal level, it is even more likely to be experienced as a harmful violation of body, mind, and soul.
What is most difficult for clinicians to understand and accept is that because they are the ones who administer these treatments, patients can experience clinicians as dangerous and people to be feared. If the physicians’ conduct is less than optimal, their patients can experience them as inhumane, dangerous, and untrustworthy. As psychologist Michelle Flaum, herself treatment-traumatized, points out:
The pain inflicted on our bodies and the terror, confusion, and panic we may feel are not lessened because the intentions of doctors and nurses are pure; in fact, it may be precisely because of those pure intentions and our socialization to the medical setting that we often stay silent ... about the intense emotions we may feel... . [E]motions such as fear, terror, and uncertainty are intense, and patients [may] experience their medical care as resembling torture.(4)
When I was 5 years old, I was treatment-traumatized. I was held down and had an ether mask forced over my face for a tonsillectomy. Three months later, I was put in isolation in the hospital for six weeks with infectious hepatitis — my first time away from home without my parents, who could only see me during visiting hours. Thus, I suffered daily micro-neglects from the nursing staff that my parents knew nothing about, although there were the larger incidents that they did discover, like the day they found me sobbing, hungry, and sitting in my bed in cold, urine-soaked pajamas and sheets. There were daily traumas, like blood draws, and a major trauma when I was forcibly restrained by adults during an abdominal paracentesis and catheterization.
These experiences left me with a profound, visceral fear and mistrust of physicians and nurses. I had recurring nightmares from which I would awaken in a panic, often sobbing. It played a role in my joining a religious faith-healing cult for a time.
My terror surrounding healthcare caused an obstetrician to mistakenly diagnose toxemia during the labor and delivery of my first son. It endangered my ability to get treatment when I was diagnosed with inflammatory breast cancer in 2009. And it led a busy, multi-physician clinic to shut down in the middle of the day and call in an emergency response team because I was having an uncontrollable PTSD breakdown in one of their exam rooms.
It’s perhaps easier to understand a small child being traumatized; children get sick and are understandably scared. But it happens to adults as well. I co-moderate a Facebook group for people with treatment-related mPTSD. In four years, we accumulated nearly 1,000 members and now are adding more than one new participant per day. By far the majority of our members were treatment-traumatized in adulthood, not when they were kids like me.
THE CONSEQUENCES OF mPTSD
The earliest contemporary mention of treatment-related medical trauma (tr-mPTSD) in the professional literature was in a 1996 article by Margaret L. Stuber and colleagues looking at trauma responses in children who had bone marrow transplants. They found that for children, treatment intensity rather than life threat was more important as a cause of post-traumatic stress symptoms.(5) In the last decade, Chrystal Lewis, a treatment-traumatized RN/PhD, and Michelle Flaum have argued very persuasively that the same dynamic can apply to adults.(6)
It is time for medical treatment and those who deliver it to be recognized as potentially powerful sources of mPTSD, not just because it happens, though that should be reason enough, but also because it has an impact on health in all its dimensions.
First, because of our fear of physicians and the treatments to which we may be subjected, people with tr-mPTSD tend to put off receiving medical care as long as possible. At worst, we may be risking our lives because our terror of healthcare providers and medical treatment is so elevated. At the least, we may delay seeking treatment at the earlier stages of a disease, making its management much more difficult when we do finally brave a trip to the clinic or hospital.
Second, when we gather enough courage to cross the threshold, physicians may have a hard time knowing what to make of our trauma-laden behaviors and how to work with us. As a result, we may be perceived as off-putting and consequently fail to get adequate medical attention. We may even be labeled as “difficult patients” because our mPTSD is dismissed as a behavior choice rather than being recognized as a biochemically mediated reaction to external stimuli that we cannot always control effectively through a simple exercise of willpower, no matter how hard we try.
WORKING WITH TREATMENT-RELATED mPTSD Patients
The good news is that under the right conditions, treatment-related mPTSD usually can be managed in the clinical setting. Treatment-related mPTSD has a large part of its foundation in the words and actions of clinicians as they engage with patients, and those kinds of engagements can be crafted if the clinician is able to see the need and respond to it appropriately.
When I was diagnosed with inflammatory breast cancer, 50 years of suppressed emotional memories emerged, to my great surprise and the consternation of my treatment team. While I grappled with riptides of terror focused on my physicians and what they proposed to do to me in the name of defeating cancer, those physicians made my efforts to gain some modicum of self-control even harder by being unable or unwilling to believe me when I tried to explain the nature of my fears and ask for their help in managing them. In the end, it was a fourth year medical student who got it right.
We are everywhere. A treatment-traumatized person may be sitting in your exam room sobbing uncontrollably for reasons that you can hardly decipher; talking too loudly and animatedly so that you feel threatened even though they have not initiated or hinted at any acts against you; or sitting there quietly and meekly, mildly dissociating to the frightening sound of your voice.
If you suspect one of us has just walked into your clinic, help us by doing a few basic things:
1. Own it. Accept that through no fault of your own, your patient may be terrified of you (and your clinic or hospital) and extremely mistrustful. Try not to take it personally, but do accept that fact and take it seriously.
All of your good intentions and Mr. Rogers-esque bedside manner may not immediately make up for the trauma your patient has experienced at the hands of medical personnel who have come before you. If you understand that healing this old psychic wound is a part of what the patient needs, over time you can form an open, trusting, and productive relationship with them. Without being a specialist in the fine art of psychiatry, how can you do this?
2. Ask about it. Ask, “What happened to you?” not “What’s wrong with you?” This will give you information about what traumatized the patient — in other words, specifics about the damaging medical behaviors and words from previous healthcare professionals and how those things impacted the patient both physically and psychologically.
With this information, you can form preliminary plans about how to move forward to provide for the patient’s immediate healthcare needs in a way that respects and makes room for their fear and mistrust without making it worse.
3. Encourage patients to keep talking to you. Don’t try to stifle them. Get their ideas about how to move forward together. This will help you flesh out your initial observations. Ask what they need right then to feel less like they’re in danger. Ask how you can respect their trauma, yet still move forward with them to diagnose/treat the symptoms they’ve come to see you about. Ask them what they think the symptoms might indicate, or what treatments have worked or not worked in the past.
Because loss of control is very often a central feature of patients’ treatment-related trauma, treat them as equal stakeholders at all decision points such as testing, diagnosis, treatment, etc. Let them know through words and actions that you are there to advise, direct, and assist them expertly, not control and command them.
4. Don’t underestimate the power of simply being present for them. The mother of a treatment-traumatized child had been told many times by clinicians that her daughter’s crying, shaking, and physical resistance to their well-intentioned treatments were signs of poor parenting and would disappear if her mother would just be more strict. When she told her story in our tr-mPTSD support group, I had to respond.
“It’s not your fault,” I told the mother. “Your daughter’s reactions are perfectly understandable and normal, given what she’s been through medically. Normal for a child or an adult! She’s not a bad kid. And you’re not a bad mother. You know her better than those doctors. You know what she’s had to endure. You’re being supportive, which is as you should be.”
“You have no idea how much your words mean to me,” this mother replied. “I have tears in my eyes, as I write this. You see us! Someone finally sees us!”
What do patients with tr-mPTSD want?
To be listened to and believed when they try to share what happened and what they know.
To be included as active participants in all medical activities.
To be seen for what they truly are: people who have undergone a special kind of trauma that must be managed with kindness by both the physician and the patient in any medical encounter.
To be respected for the knowledge and experience this trauma has given them.
These are things that all patients ought to have, but for patients with treatment-related medical PTSD, they can mean the difference between life and death. One man in our support group avoided medical care for 20 years and eventually wound up in the hospital on death’s door due to multiple chronic health conditions that could and should have been managed during all those years so that he wouldn’t have been in imminent danger of dying. A couple of years later, he met a physician during a group hospital tour and mentioned that he had mPTSD. “Oh,” said the physician, calmly owning what this man’s words had merely suggested. “What did we do to you?”
REFERENCES
National Center for PTSD. https://www.ptsd.va.gov/understand/common/common_adults.asp . April 2023.
Sommer, JL, Mota N, Edmondson D, R El-Gabalay R. Comorbidity in Illness-Induced Posttraumatic Stress Disorder Versus Posttraumatic Stress Disorder Due To External Events in a Nationally Representative Study. Gen Hosp Psychiatry. 2018;53:88. Epub 2018 May 10. https://www.uptodate.com/contents/posttraumatic-stress-disorder-in-adults-epidemiology-pathophysiology-clinical-manifestations-course-assessment-and-diagnosis - H1833171154
National Center for Health Statistics. Summary Health Statistics for Adults — 2019–2021. https://wwwn.cdc.gov/NHISDataQueryTool/SHS_adult/index.html .
Hall MF, Hall S. Managing the Psychological Impact of Medical Trauma: A Guide for Mental Health and Health Care Professionals. 1st Edition. Springer Publishing; 2016, 26, cf. p. 71.
Stuber ML, Nader NO, Houskamp BM, Pynoss RS. Appraise of Life Threat and Acute Trauma Responses in Pediatric Bone Marrow Transplant Patients. J of Traumatic Stress. 1996; 9:4, pp. 673–686.
Hall MF, Hall SE. When Treatment Becomes Trauma: Defining, Preventing, and Transforming Medical Trauma. Paper based on a program presented at the 2013 American Counseling Association Conference, March 24, Cincinnati, OH. https://www.counseling.org/docs/default-source/vistas/when-treatment-becomes-trauma-defining-preventing-.pdf .