By Madora Pennington, PNN Columnist

“You are teaching your child to be in pain, just like you. This is caused by anxiety, and she is learning it from you,” the emergency room doctor told Sondra Benson (not her real name) about her 15-year-old daughter.

Benson and her daughter both have Ehlers-Danlos Syndrome (EDS), a condition that causes ligaments, cartilage and other connective tissue to be fragile. Pain and fatigue are major complications of EDS, and many who have it suffer from migraines. Benson’s daughter was in the ER because she was having a hemiplegic migraine, a severe type of migraine which causes paralysis on one side of the body.

That night in the ER, the doctor’s orders were barbaric. He disregarded advice from the girl’s pediatric neurologist and refused to give her medication. Instead, he had her sit in a chair — not even in a hospital bed — and told her to “wait it out.”

Because Ehlers-Danlos is such a complex condition affecting many bodily systems, patients are often labeled as “difficult.” And when doctors mistreat them or even act punishingly towards them, it can make their health worse. For patients like the Bensons, these distressing, unproductive and hostile interactions tend to happen over and over again.

The cumulative effect on EDS patients of such negative experiences has been termed “clinician-associated traumatization” in a recently published study in the journal Qualitative Research in Health. In interviews with 26 EDS patients, 89% said that clinicians had disrespected them and treated them unprofessionally. Another 92% said clinicians had invalidated them.

Patients treated this way become reluctant to seek medical care. They have classic PTSD symptoms, such as triggers, flashbacks, irritability and hypervigilance. They’re also left with psychological wounds. They doubt themselves, become fearful of doctors, and lose trust in the healthcare system. They’re also less likely to follow orders and stick to treatment plans.

‘They Don’t Believe Me’

After being denied appropriate medical treatment in the ER, Benson’s daughter now resists going to the doctor. “What’s the point?” she says. “They don’t believe me and aren’t going to help me.”

Undoing the damage from events like these is not easy or simple. Despite having therapy for her medical trauma and being on antidepressants, the teenager still struggles with her self-esteem.

The study by researchers at Indiana University’s School of Medicine is groundbreaking for showing that trauma can come from difficult medical appointments and counterproductive treatment. Traditionally, medical trauma has been described in limited ways, such as the anguish that comes from a sudden brush with death, like an accident or cancer diagnosis.

Trauma for a medically complex patient begins early and accumulates over time. The patient struggles with mysterious health problems and is unable to get a conclusive diagnosis. This may go on for years, as the patient sees specialist after specialist with no clear answers. Doctors may treat such patients with suspicion. That makes the patient doubt themselves and weakens their desire to seek answers and treatment.

Even when they get a correct diagnosis, patients may not fare better. The repeated disrespectful, humiliating and hurtful encounters with doctors whittles away at their confidence and sense of security.

“We have found that negative encounters lead to a breakdown in the patient–provider relationship, even when experiences are primarily of inadvertent slights or… insults and invalidations,” wrote lead author Colin Halverson, PhD, an investigator at Indiana University’s Center for Bioethics. 

“Repeatedly being dismissed as ‘exaggerating’ and ‘inventing symptoms’ causes patients to lose faith in the healthcare system and in their ability to assess and advocate for their own best interests. This results in anxiety about returning to specific clinicians and avoidance of healthcare settings altogether. Ultimately, this means that patients suffering from clinician-associated traumatization experience worse – but preventable – health outcomes.” 

The EDS patients interviewed for this study thought that the clinicians who had mistreated them were clueless about the harm they caused. Many believe that insufficient education in medical school about treatments for their disease brought out this behavior. Their lack of knowledge made them behave badly and arrogantly.  

Benson has come to the same conclusions from her own experiences and those of her daughter.  

“I think the medical profession could use some empathy classes and training on chronic, long term, with no cure illnesses,” she told me. “We overvalue doctors and give them god like complexes, so when they don't know the answer, they feel threatened and act foolishly.” 

Madora Pennington is the author of the blog LessFlexible.com about her life with Ehlers-Danlos Syndrome. She graduated from UC Berkeley with minors in Journalism and Disability Studies.