When I was twenty-three, I was diagnosed with Crohn’s disease. It is a chronic, inflammatory condition affecting the gut, throat, and sometimes even the eyes. It’s an auto-immune condition, which means the harm is caused by the body trying to fight itself; trying to attack its own cells as if they are intruders.
I was in pain for six years before I got my Crohn’s diagnosis, and it was ten years before I got the diagnosis that would truly help me understand why my body was causing me so much agony: post-traumatic stress disorder, or PTSD.
What I now know is that my PTSD may actually have been the cause of my Crohn’s, and my endometriosis – another inflammatory condition that some believe is also an auto-immune disorder – and so, ultimately, the cause of my pain.
The reason my diagnoses took so long is because so few doctors and medical staff understand the crucial role that trauma plays in our physical, as well as mental, health.
I was brutally raped as a teenager and for ten years, I told no-one. I kept that terrifying memory locked away where no-one, not even me, could find it. I thought I could keep it there, but I was wrong.
After my rape, my body started to break down, physically, in ways that I couldn’t understand. When I was seventeen, I started getting intense pains in my stomach and gut. The pains caused me to vomit, lose consciousness, lose feeling in my legs. I was hospitalised again and again that year.
Every time I presented to emergency, the doctors couldn’t find a specific cause for my pain, so they sent me home. But I kept coming back, because the problem hadn’t been solved, and the pain never went away.
Eventually, doctors would connect the dots: that my rape and my post-traumatic stress disorder had caused my immune system and my nervous system to break down.
In the aftermath of the traumatic attack, my body’s fight-or-flight system became confused, it thought there was danger everywhere. My nervous system became overactive and started sending pain messages constantly so that I would do something about the damage the man had caused to my pelvic floor.
The reason I was left without proper medical care for so long was that trauma is not a critical part of medical training or medical care – even though it is a critical part of so many of our medical stories.
It’s time to train all doctors, no matter what their speciality, in all the different ways that trauma can show up on the body. Otherwise, we’ll condemn ourselves to a system that continues to let people like me fall through the cracks.
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“The physical body can no longer be considered separate to the mind,” Joan Haliburn, a lecturer in psychological medicine at the University of Sydney, told Women’s Agenda. “Trauma-informed care must be introduced – a system that addresses all patients with trauma in mind.”
Trauma-informed healthcare means making sure that doctors know how to spot the signs of trauma in a person’s medical and personal history, know how to ask the right questions and know which physical conditions trauma can cause.
“Trauma has been linked to many medical conditions, including, but not limited to autoimmune diseases like Crohns, Rheumatoid Arthritis and Lupus, heart disease, diabetes and hypertension,” Dr. Linda Henderson-Smith Director for Children and Trauma-Informed Services at the National Council for Behavioural Health, told Women’s Agenda
Trauma-informed care is particularly important for women. A staggering 80% of people who suffer from chronic illnesses and chronic pain conditions are women. Women are also much more likely to be exposed to traumatic experiences, and are much more likely to end up with symptoms of PTSD when they do.
“Trauma and neglect dysregulates and disorganises this sensory awareness,” Haliburn explained. “Sensation can be heightened and reactivated, or numbed and disconnected. heightened awareness increases somatic awareness, and often unexplained presentations to medical care.”
Trauma-informed care means understanding these physical side-effects of trauma, and also fostering a safe doctor-patient relationship in which the sufferer feels able to be honest about what has happened to them.
If I had felt like I could speak openly about my rape in doctors’ surgeries when I was a teenager, I would have received the physical and psychiatric help I needed ten years earlier than I did. That could have completely changed the course of my life.
It is also vital for doctors to avoid re-traumatizing patients with post-traumatic stress disorder. That means being trained in having sensitive conversations about traumatic events that do not trigger or upset the patient. But it also means knowing when certain medical interventions will also be re-traumatizing.
For example, endometriosis is a common condition in women that doctors believe may, in some cases, be a consequence of sexual assault or other physical trauma. At present, the only effective treatment to remove endometriosis is an invasive surgery. We now know that this surgery itself can be registered by the body as a physical trauma – which means that surgery may make the pain and auto-immune aspects of a person’s endometriosis worse, rather than better.
Another example is vaginismus, a condition in which sufferers experience an automatic contraction of the vaginal and pelvic floor muscles when any kind of penetration is attempted. When it happens, whether it happens. It is an automatic physical reaction, like vomiting when poisoned food hits your stomach. It is not mental, it is physical.
But without being on the look-out for vaginismus, a lot of doctors will investigate other gynaecological conditions. Those investigations often involve penetration using a speculum, or penetrative swab tests. The treatment is exactly the thing that the body fears most, and so not only will those investigations turn up nothing – they will make the patient’s condition worse.
Haliburn also explained that trauma can sometimes explain why people will be continually presenting to doctors or emergency rooms without a clear underlying cause – because the body’s nervous system and pain system is misfiring. For all of history, we have dismissed this as “hysterical”, accused women of lying about pain. But all along, the only problem has been that we haven’t understood how trauma effects the body.
Under a trauma-informed healthcare system, Haliburn said, “very practitioner will approach patients empathically, and be more understanding of those who appear to be ‘exaggerating’ their complaints, or exaggerating the frequency or the chronic nature of their complaints.”
Proper treatment will mean recognising when patients should not be subjected to “numerous investigations and surgeries” and should be given a break from medical interventions to deal with the psychiatric elements of PTSD, Haliburn said.
When I asked Dr. Herderson-Smith whether she thought that some chronic conditions are connected to PTSD, she said. “I don’t think it, I know it.”
“The more traumatic experiences one has, the more likely they are to have poor health outcomes,” she said.
Dr. Henderson-Smith said that the known connection between trauma and physical disease and disability means that doctors cannot make a comprehensive diagnosis if they do not include trauma in their investigations.
“Understanding how trauma and medical conditions are connected and the symptoms of PTSD are important for a fully informed diagnosis,” she said.
Dr. Henderson-Smith added that a trauma-informed healthcare would improve outcomes for traumatised patients “drastically.”
“The base understanding of the perception and worldview that someone who has experienced trauma may have could allow medics to modify their behaviour to avoid retraumatisation,” she told Women’s Agenda.
Trauma-informed models are starting to appear around the world in different areas of policy, including housing and criminal justice. But trauma-informed medical care models are still in their infancy – a fact that is putting thousands of lives at risk. Let’s change that.
“Trauma and neglect is a hidden epidemic that is increasing day by day,” Haliburn told me.