Flaws in our public health system* are creating havoc in the lives of people with eating disorders (EDs). I am a mentor for Shelley**, who is in her 40s, and lives in a country town in Australia. Shelley has diagnoses of severe depression and severe and enduring anorexia nervosa (SEAN). She has a husband and two young children. Two weeks ago, Shelley was admitted to the psychiatric ward of a regional public hospital, more than 100km from her home, as an involuntary patient. She was suffering deeply from her depression and SEAN and was experiencing periods of dissociation.
Recently, Shelley was given leave to go home from the locked psych unit at the regional public hospital, on strict instructions she was to return to the hospital, 48 hours later, at 8pm. She was given enough medication to cover this time away from the hospital environment.
Shelley had her bags in the car and her husband was ready to drive her back to the hospital in line with the arranged curfew, when she received a phone call from the hospital, telling her, “There is no bed for you. Stay at home and we will call you tomorrow.”
Shelley was told her bed had been given to another patient. You can probably imagine, as I did, that Shelley immediately began to experience many devastating emotions. Luckily, she felt able to reach out to me, her mentor. She reported that her illness voice was now shouting at her, “See, this is confirmation that you are unworthy. You don’t deserve a bed. You don’t deserve to eat. You don’t deserve to drink any fluids. You don’t deserve to be cared for. You are a waste of time.”
Shelley’s ED voice was screaming that she was not to eat or drink until she was back in hospital. This was her punishment for being so unworthy.
I feel upset on Shelley’s behalf, that our public hospital system can treat a severely mentally and physically ill person with such disrespect.
Shelley did her best to try and help her embattled and weakened Healthy Self. She knew she needed help to stay safe. Seeing as her bed had been given to someone else, she asked the hospital staff if she could return to the hospital as planned that evening so that she could receive her medication, and stay overnight in Emergency, which was where she had to stay for one night when first admitted. But she was told, “No”. Shelley also suggested that the person who was receiving her bed could perhaps instead stay overnight in Emergency, seeing as she had done so herself while waiting for a bed, and again was told, “No”.
I asked Shelley if the psych unit had suggested arrangements would be made for her to be admitted to her hometown hospital’s general ward that night, pending a bed becoming available in the psych ward at the regional hospital, and again the answer was, “No”.
Shelley is currently on a waiting list to be admitted to a private ED clinic, where she has felt safe and supported in the past, but this latest setback means her clinical symptoms, such as blood sugar, blood pressure and Body Mass Index (BMI) levels are struggling to meet the admission requirements.
The night Shelley was rejected by the public hospital system was difficult for her and her worried husband. The next morning, the psych ward phoned again and said, “You can come back now.”
Can you imagine what it feels like to return to a place where only the day before you had been rejected (as not worthy, not good enough to be helped)?
The negligence of the hospital in inciting Shelley’s ED and traumatising the scant presence of her Healthy Self, has caused untold damage and regression. Shelley continues to feel she does not deserve food or water. She does not feel she has the right to exist. On her first full day back in the locked ward, Shelley was told the psych ward psychiatrist and doctor would meet with her the next day. At 7pm the next day, she called me and whispered (whispered, because her voice, like her body, is so weak) over the phone that, “The doctor and psychiatrist were in the unit, but they have gone home; they did not call in to speak with me”. Shelley was not told the treatment team’s visits had been cancelled. Again, she was ignored; again, her ED was screaming, “You don’t matter”.
I don’t know why Shelley is not receiving the care she needs and deserves in this public health system psych ward. The nursing staff might be too busy, under-resourced, or understaffed, or they might be ignorant of the needs of a patient with SEAN, or they might lack empathy and compassion, or they might be told the priority is to “keep the patient safe” rather than also to help them to manage their illness and heal. Whatever the reason, the standard of care is not good enough. As a minimum, Shelly requires supervision while eating her meals, and after eating her meals, to help allay the inevitable anxiety and guilt that ED incites. She also needs someone to ensure she consumes sufficient water or fruit juice. A nurse sometimes remembers to ask what has been eaten, and how much water has been consumed, and Shelley’s ED, like every other severe ED, is happy to oblige with a positive but faulty answer. Perhaps staff are inadequately trained in treating ED, a very serious illness. Whatever the reason, this treatment, or lack of treatment, I repeat, is not good enough in 2021.
I feel the need to be a voice for Shelley, and she is happy for me to share her story, because we need to fix the flaws and fill the gaps in our public health system. For Shelley, and those who follow her. To date, the system has been supporting and strengthening Shelley’s ED, instead of supporting and strengthening her fragile healthy self. We need to respect and support patients like Shelley, who have a right to the best of care. With the right treatment and support, Shelley and others like her can recover; with the right treatment, they can be free to enjoy life, enjoy their family and develop their special gifts (Shelley is a talented artist).
Shelley needs ongoing care and support to regain her healthy self. So far, she has been caught in a revolving door where she is admitted to hospital, stabilised, and then sent home. Repeatedly over the years. Stabilised, but not fully treated. I believe recovery from an ED is possible at every age, when the patient has access to the right, ongoing treatment. A little bit of help here and there never works. ED wins again, and again. Shelley first reached out to me in 2012, as someone from my childhood region who had read my memoir, A Girl Called Tim, and was struggling with the same illnesses I had experienced more than 40 years before. Lack of mental health support, especially in rural regions, has been a major obstacle for generations. Shelley and her husband attended Australia’s first national ED conference for carers in Brisbane in 2013, and she has continued to struggle in an inadequate health system. Her husband supports her as best he can, and her ageing mother travels 50km from another town each week to assist with the children.
Things were looking a little brighter at the start of 2021 when Shelley was accepted for support by the federally-funded National Disability Insurance Scheme (NDIS) and her local support coordinator was in the process of arranging her support workers when Shelley needed admission to hospital as an involuntary patient.
Several days have passed since Shelley’s readmittance to the psych unit. Her ED voice is continuing to dominate her thoughts and behaviours. Much damage has been done to her tiny sense of healthy self. Ideally, her vitals will improve to the stage where she can be reclassified as a voluntary patient and be transferred to the private hospital’s ED program. I know you will join me in creating a circle of compassion, empathy and support for Shelley. Her life does count. Like everyone with an ED, she is a person first and foremost. She is a person with an illness. She deserves to be treated with respect at all times. The illness is the problem, not the person. Let’s remember this.
It’s time to replace rejection and disrespect with acceptance and respect. Let’s make this an aim for 2021.
I am finding more adults in the mid-life age range are struggling with long-term EDs and are in need of help to cope with daily expectations and pressures. We have made some gains in care in recent years, but have a long way to go. For instance, to get NDIS acceptance, my clients and their health professionals have had to tick Depression/Anxiety boxes on the application forms – they have been told there is no specific ED box and the message this gives to people is, “You are weak. Your illness doesn’t even count.”
With the right support, people with severe EDs can live at home, engage in family life and the community. They can largely reduce their rate of hospital admissions, and through being listened to, and through being treated with respect, they can start to see and feel that their life does count. With the right support, these people with long-term EDs can improve their quality of life and strengthen their healthy self… to be listened to, believed in, and treated with respect, means so much to them.
Mentoring is very important for people with EDs in filling the gaps and providing support between psychiatric, psychological and other health professional appointments during the week, after hours, and on weekends and public holidays. Recovery is a full time job. It doesn’t start at 9am and finish at 5pm. Recovery is a 24/7 slog, and this is why mentoring support is vital. Health professionals work closely with mentors, like me, on behalf of their patients – the best results occur through collaboration, with everyone – the patient, the treatment team and the family all on the same page.
At 70, I was planning to ease up on my ED advocacy work but instead, I find myself increasingly advocating for people like Shelley who are experiencing the same illness and challenges that I was developing in the 1960s.
The show must go on, because Shelley and others like her, deserve our respect and our support. Recovery IS possible, at every age.
*This story is based in Australia.
**Shelley is a pseudonym.