The neglected world of comorbid disorders
In the ambulance, Katelyn (not her real name) wondered if she was having a psychotic episode. She thought she heard the ECG monitor emitting a drawn-out tone. For the past eight weeks she’d been told her heart could stop at any moment. Was this it?
By now she couldn’t stand in the shower without running out of breath. Her skin was yellow and her nails were rotting. It hurt to move because the muscle and tissue that protected her organs from her bones were deteriorating. Her liver and kidneys were shot.
After one night in the emergency ward of a major Melbourne hospital, she was discharged. Katelyn was dying, but she was refusing care and she was deemed too high risk to be sectioned. “No one thought she would survive,” says Katelyn’s mother. “She was 37 kilos. Everything was failing and there was nothing I could do.”
Katelyn was locked in a catch-22. She was anorexic, but an eating-disorder ward will not admit someone withdrawing from drugs. She was dependent on ice, but detox units will not admit someone below a certain BMI.
It’s easy to understand why. The two services operate separately. Without the knowledge of combined care, whichever service accepts the patient could let them die. A patient with comorbid problems is unpredictable, perhaps even psychotic. The effects of the drug mask the severity of the eating disorder, and vice versa. A feeding tube will be needed. There may be arrhythmia. An emaciated body may not withstand withdrawal from drugs, nor the medications used to facilitate it.
Sitting in a Melbourne cafe now, Katelyn’s eyes are steady and blue, her skin glows. She’s 19, and has been healthy for a year. She speaks evenly and analytically, mindful of providing descriptive details.
Katelyn was 14 when she began working out obsessively. She became vegetarian, then vegan. In six weeks she lost 20 kilograms. Soon after, she was diagnosed with anorexia, anxiety, depression and post-traumatic stress disorder. Like many who suffer eating disorders and substance abuse, Katelyn had been sexually abused.
It’s well established that an eating disorder can be a method of regaining ownership of the body. What’s not as well known is the high comorbidity with substance use – 35 per cent of problematic substance users also have eating disorders, according to a three-year study from the National Centre on Addiction and Substance Abuse in the United States. Both conditions require intensive therapy, yet only expensive private clinics have the facilities to treat both, and then only in the short term.
Katelyn had started drinking at 12 and progressed to ice. “Ice would allow me to escape reality,” she says, explaining that if she smoked ice every day, she would lose her appetite and, with it, her food anxiety.
But after one particularly bad episode on ice, the police were called and Katelyn was sectioned. She was discharged after 28 days. “I was so messy,” she says. “Maybe I’d gained a bit of weight but I wasn’t better.”
Katelyn’s mother called a crisis, assessment and treatment team to do a welfare check. “Katelyn was difficult to engage with and I didn’t know if it was the drugs or the anorexia that had more of the control,” she recalls. “She was living in another reality and nothing made sense. We were all the enemy and trying to help her was perceived as harmful.”
She gave her daughter an ultimatum: check in to a private psychiatric clinic’s intensive care unit or go back out on the streets and lose her remaining family. Katelyn accepted, but upon being discharged from ICU she would need to stay off ice for two weeks to be admitted to its rehabilitation program.
That’s when her mother called Amber Farrugia, the founder of Bluebird House, a rehab centre on the outskirts of Bacchus Marsh, north-west of Melbourne, that was not yet open. Farrugia had firsthand understanding of the dual diagnosis predicament, having been a drug and alcohol support worker at a private clinic. “There was a constant stream of people there with comorbid problems, either mental health or an eating disorder,” she says. “No one’s a straight ‘addict’; it’s complex.”
Farrugia confirms that Katelyn was expected to die. “I went in and said, ‘I’m a recovering addict myself. Can you trust me and give it a shot?’ ”
Staffed by a team of volunteers, Bluebird House opened early for Katelyn; too early to even apply for government grants. “It took us five weeks while we were operational with Katelyn in the house to secure insurance,” Farrugia says. “We were linked with Bacchus Marsh hospital and we got around the legalities by making sure any medical care was overseen by a doctor.”
Being the only patient, Katelyn received one-on-one care for eight weeks, with the team doing its best to tackle her ice use, her eating disorder and the underlying trauma. “They were risking liability for me and they had hope in me,” she says. “I had no one else left.”
Katelyn completed 84 days, then was accepted at SHARC – the Self Help Addiction Resource Centre for people under 25, which has use of seven residential houses. For nine months she lived in a share house, attended their program five days a week, saw a dietitian and a trauma specialist, and began studying.
SHARC is a long-term support system for people with comorbid problems, but it can only come into play once the individual has detoxed and their eating disorder is in remission. What’s desperately needed is a health system that can cope with a comorbid crisis.
Christine Morgan, the CEO of the Butterfly Foundation for Eating Disorders, says, “There are no specific [public] programs for both eating disorders and substance use to the best of my knowledge. Specialised inpatient treatment is very limited in Australia.”
There are some obvious ways forward. Katelyn is a veteran of 28 hospital and clinic admissions, but none tackled her underlying trauma. Had she received appropriate care upon her first few admissions, her anorexia and ice addiction might not have developed.
At present, individuals such as Katelyn are sometimes advised by their GPs to play down their drug use when approaching eating-disorder clinics – only admitting to weekend use, say. With this in mind, many wards are already dealing with drug withdrawal, even if inadvertently. Meanwhile, funding of the Butterfly Foundation’s telephone line continues to be uncertain after the federal government announced a streamlining of mental health services. Things are dire, too, for Bluebird House, which is closed while it seeks funding. But there’s better news for Katelyn, at least. She now lives in an apartment with her boyfriend and works as a swimming teacher. She’s still enrolled in SHARC’s program and also attends 12-step groups. She’s determined to speak for those people still falling between the cracks.
“If you’ve got bipolar and drug addiction, somewhere will take you,” she points out. “When it’s an eating disorder no one will. But where are those people going to go?”
The Butterfly Foundation’s national helpline: 1800 334 673
This article was first published in the print edition of The Saturday Paper on Nov 19, 2016 as "Surviving the system". Subscribe here.