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PTSD in the hospital: Why the emotional scars of serious illnesses linger long after treatment

What happens when the health-care system that heals you also leaves behind long-lasting emotional scars?

'I started sobbing and sobbing': Emotional scars may last long after leaving the ICU

Isabel Jordan struggled with post-traumatic stress disorder for years after caring for her son who was treated for a rare genetic disorder. (Submitted by Isabel Jordan)

[Originally published on March 24, 2018]

Isabel Jordan spent eight days by her six-year-old son Zachary's side in an intensive care unit at the B.C. Children's Hospital as he was being treated for a rare genetic disease.

She and her husband stayed by Zach's bedside after he underwent surgery to remove a large tumour from his jaw.

"He would have to be held down for things because even though he was small, he was mighty," she recalled.

"We allowed things to happen that were painful to him because we thought it was in his best interest. We now know things could have been done better, or we learned as we went."

What Jordan didn't anticipate, however, was that the emotional trauma and exhaustion wouldn't fade away in the months and years after his recovery.

"It was only when things kind of became more normal at home that the impact of everything we had gone through really hit me," she told White Coat, Black Art's Dr. Brian Goldman.

'I couldn't turn the pictures off in my head': A mother's battle with PTSD

5 years ago
Duration 1:31
Isabel Jordan describes her struggle with PTSD after her young son spent days in the Pediatric ICU.

"I just started having all these visions of him in hospital and alarms going off and him reacting to all these different things. I started sobbing and sobbing and I couldn't turn the pictures off in my head."

Tiny, subtle sights or sounds would trigger memories of deep trauma, she said.

When she returned to the hospital with Zach for a checkup or update on his recovery, the sound of her footsteps in the same places he underwent treatment yanked her mind back to their darkest hours, reducing her to tears.

I thought, that's what people who experienced violence had, not something that people experienced health care had.- Isabel Jordan

"It would just happen in the quiet times, and it was unpredictable, and it was overwhelming. And I didn't know what would bring it on or why it would happen or how I could make it stop," she said.

It wasn't until years after her first episode that she was diagnosed with post-traumatic stress disorder.

Jordan, right, with her husband Tyler, second right, and their kids Evie and Zachary. (Photobin Photography/Submitted by Isabel Jordan)

"I thought, that's what happened to soldiers after war. It didn't make sense to me," she said.

"I thought, that's what people who experienced violence had, not something that people who experienced health care had."

Hospital, battlefield PTSD share much in common

Dr. Gary Rodin, head of supportive care at Princess Margaret Cancer Centre in Toronto, says the trauma of going to the hospital for a life-threatening illness isn't so different from someone who has seen military combat or been the subject of a physical assault.

Jordan's case also exemplifies how PTSD can affect the patient's loved ones just as much as the patient, he said — especially parents, spouses and partners.

"She doesn't have the illness, but one of the people she cares most about — probably in the world — does," he explained. "Some of the highest rates in PTSD are in mothers of children who have a serious or life-threatening illness."

Rodin says hospital PTSD is far more common than many people realize. He's seen it develop in up to 25 per cent of patients who have cancer and other life-threatening conditions.

"What's not recognized is that one of the most common traumas human beings face is a serious medical illness," he told Goldman. "So especially at the time of diagnosis, or a complication, or when there's screening, all these things may trigger enormous anxiety."

'A light shut off emotionally'

Sandra Dudych's battle with breast cancer had more complications than most survivors.

Dudych's health scares included a serious skin infection at the site of her mastectomy and a life-threatening blood clot sparked by an IV-line insertion. A serious fever led doctors to advise she stay indoors, away from crowds — the week of her daughter's wedding.

She also lost five friends to cancer in a six-month period in 2016. Survivor's guilt compounded her emotional burden, she said.

It was like a light shut off emotionally. I just felt sort of numb.'- Sandra Dudych

"It was like a light shut off emotionally. I just felt sort of numb," Dudych, from Winnipeg, told Goldman.

"I didn't think I had PTSD. When you're going through cancer you're told, 'You know, you're going to have some repercussions. You're going to have some post-treatment stuff.' But you're not really told," she said.

She later ended up doing her own research and took it to her family doctor, who confirmed the diagnosis.

A recent study found that one in four patients newly diagnosed with breast cancer also get PTSD.

Sometimes, as in Dudych's case, the emotional scars can emerge years after going into remission.

'Moral obligation' to treat patients' PTSD

Dr. Rodin says that the medical profession has a lot of catching up to do when it comes to giving patients and their loved ones the proper resources and treatments for PTSD.

The medical community, he argues, has historically focused more on "medical or physical or biological treatments."

The emotional toll the treatment process can take on patients is often left to the side — even though its consequences can be just as serious or costly.

"Some people think it's common, therefore there's nothing to do about it," he said of hospital PTSD.

"We would say exactly the opposite — that the fact that it's common means we have a moral obligation to do something about it, to prevent and to treat it when it does occur."

Sandra Dudych suffered multiple complications while undergoing treatment for breast cancer. She was diagnosed with PTSD years after going into remission. (Submitted by Sandra Dudych)

Rodin and his team at Princess Margaret Hospital developed a program called Emotion and Symptom-focused Engagement (EASE), which provides emotional support and anxiety management for people who are suffering from hospital-related PTSD.

"We know this kind of proactive intervention reduces PTSD symptoms ... and also reduces all kinds of other distress," he said.

Rodin says a short course of treatment can do wonders when PTSD is recognized early.

That's hopeful news — partly because both Dudych and Jordan told White Coat, Black Art that their counselling sessions were cut short when their benefits ran out.

'Life isn't just being patched up'

For Dudych and Jordan, simply putting a name to the mental demons haunted them — and knowing that they weren't alone — brought a palpable relief.

"It kind of felt like a bomb going off when [my family doctor] confirmed it," Dudych said.  "It's like, 'OK, well, I'm not dreaming these things up. Thank you for validating it.'"

Today, Dudych is paying it forward by volunteering with the non-profit Canadian Partners Against Cancer, a federally-funded agency that aims to improve front-line access to cancer care across Canada.

Dudych, left, almost didn't make it to her daughter's wedding due to complications from her treatment. (Submitted by Sandra Dudych)

Jordan's son Zachary is 16 now and doing well. She says the key to her own recovery was coming together with other parents and doctors to form the Rare Disease Foundation. It was then that she discovered other parents were going through PTSD.

"Our family went from being in a leaky rowboat in the middle of an ocean by ourselves to having a community of support with resources," Jordan said.

"We can't just patch people up and do these amazing things and then send them on their way and say you're fine now … Life isn't just being patched up. It's carrying on afterwards."