I see you. I see the struggle of chronic illness, I see the deeply intertwined web of psychological stress and reactions of the body, and I see the impact of the “care” provided by the medical system.
As a fellow in pediatric gastroenterology, I have spent the last few years at the bedsides of my patients, many of whom are living with the ebbs and flows of chronic pancreatitis. I have witnessed a medical system that repeatedly imposes stressful and potentially traumatic practices on kids and their families. I became interested in understanding the trauma caused by medical care and the role this trauma plays in chronic illness.
Researchers are just starting to recognize that medical care can actually be traumatic for patients, especially children. Here’s what we’ve learned so far.
When Treatment Causes Trauma: Medical PTSD
Being stuck with needles repeatedly. Lying in pain in a hospital bed, connected to machines by tubes. These and similar experiences can be understandably scary for children, or even adults.
I treated a three-year-old chronic pancreatitis patient who would lie to her parents about her pain to avoid going to the hospital. Another patient, seven years old, tried to flee the operating room, screaming “I know what you are going to do to me!” It took us 40 minutes to convince him to go under anesthesia. These children, young as they were, already believed that the hospital was not a safe space.
What makes medical experiences traumatic, rather than merely scary or unpleasant? Experiences become traumatic when they cause lasting symptoms that impair patients’ ability to carry out normal activities. There are four aspects of this trauma: arousal (for instance, having trouble sleeping or being easily startled), intrusion (flashbacks, memories of the event coming up when you don’t want them to), avoidance (for instance, avoiding situations that trigger memories of the event), and negative mood (such as having a negative perspective about yourself). We don’t know what makes a particular incident more traumatic than others—it’s something we are researching.
When children are traumatized by medical events, they experience a mix of physical and psychological impacts that are collectively known as pediatric medical traumatic stress, or PMTS for short. There is now a technical definition for this condition: “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.” You may be familiar with a similar-sounding condition, PTSD—post-traumatic stress disorder—and its terrible effects on soldiers and others who have experienced severe stress. PMTS has similar impacts on children and their ability to go about their daily lives.
If you’re the parent of a child with pancreatitis, you probably recognize this phenomenon, even if the name is new. Has your child tried to avoid medical procedures? Has she become wary of doctors? Has he been withdrawn for more than a short period—maybe not engaging at school, or not playing with friends? These are common symptoms of medical trauma. Many patients with chronic pancreatitis show these and other symptoms of PMTS.
PMTS is best understood in children with cancer or injuries, or who have been admitted to the intensive care unit. But it is increasingly being studied in patients with chronic illnesses, including chronic pancreatitis. For more information click here.
Chronic Illness Means Repeated Trauma
Traditionally, PMTS has referred to the effects of a single event—a diagnosis, for instance, or a painful procedure. But this model does not fit patients with chronic illnesses, especially chronic pancreatitis, because they are repeatedly exposed to traumatic events. There isn’t just one operation or one period of illness. There is a lifetime of doctors, medicines, surgeries, hospitalizations, secondary illnesses, and complications, each of which means recurrent interactions with the healthcare system.
Researchers believe that repeated childhood traumas put the body’s alert systems into chronic overdrive, creating a phenomenon called toxic stress. Toxic stress causes measurable changes to the body, altering the way the body and brain develop, right down to the structure of DNA. For more information on toxic stress click here.
Repeated traumatic stress can cause measurable changes to the body.
What can we do?
The study of this phenomenon is in its infancy. But in the coming years, we hope to better understand:
- How common Pediatric Medical Traumatic Stress (PMTS) is in patients with chronic pancreatitis
- What puts patients at risk for PMTS
- How some patients endure many traumatic events without developing PMTS
- The impact of PMTS on the disease’s progression.
Along with other scientists, I am studying ways to minimize medical trauma to children undergoing treatment, screen patients for risk factors, and ease symptoms.
The National Child Traumatic Stress Network has already taken the first steps, putting together resources for parents and providers to address medical traumatic stress. Check them out here.
Although we’re still learning a lot about PMTS, we do know of steps that parents can take to help their kids avoid medical trauma. For instance, it’s very important to maintain schedules and routines, at home and in the hospital. Even something as simple as brushing teeth twice a day can send the message that regular life is continuing. Be sure to communicate early in the medical process with your child’s doctor and social work team. And never trick or lie to your child about a medical procedure or hospital stay. I’ve seen well-meaning parents do this, but it never helps, and often causes damage. Your child’s medical caregivers can offer advice on how to talk to your child about upcoming medical care.
If your child is suffering from PMTS, keep up with those all-important routines. Seek psychological help but be aware that since PMTS is related to medical care, you need to keep your child’s doctors and social work team involved. Find a therapist with experience with chronic illness. If you are unsure how to locate one, check with your medical or social work team for advice. And don’t forget about yourself. If you’re finding it hard to cope with your child’s illness, get help. Helping yourself also helps your child—the effects trickle down.
Tips for Preventing Medical Trauma to Your Child
- Maintain schedules and routines
- Communicate early and often with your child’s medical caregivers
- Be honest with your child about upcoming medical procedures or visits
Tips For Helping Your Child Cope with Medical Trauma
- Maintain schedules and routines
- Seek psychological care for your child from a therapist experienced in chronic illness
- Keep doctors and social workers informed about your child’s psychological care
- Get psychological care for yourself
Key Takeaways
I see you. But today I also see a light at the end of the tunnel. I see a greater understanding of the trauma caused by treating chronic pancreatitis and a new determination to find solutions. I see hope for reducing your trauma as we treat your chronic pancreatitis.
- Medical procedures can be traumatic for children, and this trauma can cause “medical PTSD”– a condition called pediatric medical traumatic stress, or PMTS
- PMTS is being studied in people with chronic pancreatitis and other chronic illnesses
- If children suffer from PMTS, parents can help by finding psychologists experienced in chronic illness, keeping their doctors and social workers informed, and seeking care for themselves
