Medical trauma can trigger fierce post-traumatic stress disorder

The sound of overhead explosions and bright flashes of light caused by fireworks. The sound of squealing tires followed by breaking glass. The smell of smoke and the sound of a smoke detector. The sound of the alarm on your oxygen concentrator in the middle of the night. Each of these can be a trigger — and perhaps the cause of post-traumatic stress disorder (PTSD).

In the not-so-distant past, the term PTSD was primarily associated with military personnel returning from war. As more was learned about the disorder, it was applied to a much broader list of traumas. PTSD can happen when a triggering event brings back any of several kinds of traumas, often with a similar intensity to the original event.

Experiencing trauma

The single most traumatic event in my life happened decades ago. Yet it still triggers an emotional response today.

In my midteens, I woke up in the middle of the night in a smoke-filled room. My initial thought was that I was just groggy from leaving sleep. As my brain began to process the smell and my eyes identified the smoke, reality set in quickly. Fire!

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My dad had fallen asleep while smoking a cigarette. It caused a smoldering fire. To this day I have a healthy respect for fire and fire safety.

But since I was diagnosed with idiopathic pulmonary fibrosis in January 2017, I’ve experienced medical trauma, too.

Medical trauma

One of my colleagues, Lara Govendo, writes for Cystic Fibrosis News Today here at Bionews, the publisher of this site. A mental health counselor, Govendo introduced me to the term medical trauma. She wrote about the issue, saying, “When therapists helped me understand that I don’t need to have fought in a war to have post-traumatic stress disorder (PTSD), my perspective changed. It turns out that experiencing frequent medical trauma can cause PTSD, too.”

Medical trauma, according to the International Society for Traumatic Stress Studies, “is emotional and physical responses to pain, injury, serious illness, medical procedures and frightening treatment experiences.” It doesn’t have to be a single experience, but can be a compilation of events and exposures to treatments.

Many people don’t like computerized tomography (CT) or magnetic resonance imaging (MRI) procedures, for instance. They feel trapped in a CT machine, or the noise during an MRI makes them anxious. That can be traumatic.

Not exclusive to patients

Medical trauma is not exclusive to patients. Caregivers can experience PTSD based on their experiences with their patient.

Following my bilateral lung transplant in July 2021, my wife, Susan, shared with me her experience while I was in surgery. Please remember that when I got my new lungs, it was at the height of COVID-19. Susan sat in the waiting room by herself because no one else was allowed in. It was the middle of the night, and she had a recurring thought: that she might leave a widow.

To this day, when I’m having anesthesia, Susan sees me to the door and is there after I come out of it.

Another colleague who also writes for Cystic Fibrosis News Today, Jennifer Chamberlain, is the caregiver for her second child, Claire, who was born with cystic fibrosis. Chamberlain explained that she experienced “flashbacks and repetitive images” tied to the events of Claire’s 68-day stay in the neonatal intensive care unit.

PTSD is real in the rare world

How PTSD may manifest in your individual journey is as different as the journeys themselves. It can come out as anger, anxiety, or even depression. In the pulmonary fibrosis community, you can speak to your care team for their recommendation on treatment. If you’re being seen at one of the Pulmonary Fibrosis Foundation’s Care Center Network sites, a social worker should be on the team.

June is National PTSD Awareness Month. Have you experienced medical trauma? Mine was the sound of an oxygen concentrator’s alarm in the middle of the night.

Whether you’re a patient or a caregiver, it’s important to recognize trauma and PTSD, and it’s OK to seek help if necessary. Raising PTSD awareness in the rare community is how I can make every breath count.

Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.