Over more than 30 years, Peoria resident Michael Burns was diagnosed with everything from ADHD to PTSD to depression, but it was not until he did his own research that he found a diagnosis that fit: Complex PTSD.
When he showed his research to his clinicians, they agreed he was the poster child for the condition, defined as post-traumatic stress disorder with “trauma with victimization or betrayal” as its cause.
“Up until now the diagnoses have been all over the place, and based on symptoms rather than whole complex causes,” Burns said.
First identified in 1988, CPTSD was added to the World Health Organization’s International Classification of Diseases in 2019 – the same year Burns did his research – and that listing only became official this year.
The WHO listing “is especially important for these patients because they are so often misdiagnosed,” said Judith Herman, the psychologist who first described complex PTSD in 1988.
Burns and other sufferers say that, even with official WHO recognition, they still struggle to get the right diagnosis and treatment. They also are unable to obtain disability, insurance and other support.
Dr. Julian Ford, a clinical psychologist and professor at the University of Connecticut School of Medicine, said often clinicians understand the concepts of complex PTSD, but record it as PTSD.
That’s what happened for Mary Armstrong, a Virginia resident who said two separate mental health professionals told her she had CPTSD, but that her official diagnosis remains PTSD. That lets her get access to some treatments, but not enough.
“With it not being an officially recognized diagnosis, there’s nothing to support my, you know, my experiences,” Armstrong said.
PTSD symptoms do not fully encompass what complex PTSD sufferers experience. Ford said they also include emotional dysregulation, lack of self-worth and having difficulty in relationships.
Herman thinks the resistance to diagnosing people with CPTSD is because those trained in the mental health field “learn very little about trauma.”
Ford said an important distinction from PTSD is how the trauma happens: Complex PTSD is “trauma with victimization or betrayal.”
Burns has sought help since his early 20s, and was diagnosed with depression, PTSD, attention-deficit/hyperactivity disorder, severe social anxiety, generalized anxiety disorder and insomnia. None brought a long-term solution.
He tried different therapies, which made him worse.
Herman said misdiagnosed complex PTSD can lead to a patient getting prescribed too many drugs. Burns has been prescribed several antidepressants and anxiety drugs over the years.
“I can’t work, I can’t fix this. Drugs aren’t working, nothing’s helping. My therapist bails, now I got to find another one,” he said.
A lack of a CPTSD diagnosis can also make it harder for people to get the right treatment.
Jenice Hughes is a nurse-anesthetist at Scottsdale Ketamine Clinic, which offers treatment for CPTSD, but said it is currently “considered an off-label use so insurances and stuff have gotten away from having to pay for it.”
Burns found an inpatient treatment he wanted to try, but he could not afford it.
Both Burns and Armstrong said that, now that CPTSD is recognized by the WHO, they will keep pressing for wider recognition.