Adult experts by experience stories call for improved care for chronic eating disorders
Living with an eating disorder for 20 or more years can severely impact life quality. Some people with a long-term eating disorder can be high functioning on a tiny partial self, while others are trapped in a perpetual revolving door scenario, going from home to hospital, and hospital to home.
Always, the struggle not to succumb to the eating disorder bully is great.
There is growing recognition that people with long-term eating disorders deserve better access to health services. Nutritional restoration is vital, but research shows that listening to patients’ stories, and focusing more on steps to improve their quality of life, social adjustment and independence, can be more helpful than focusing on eating disorder symptom reduction, which can be overwhelming. This is a vast improvement on the widespread attitude that “we can’t do anything to help these difficult patients”, so “we will fatten them up (if they have Anorexia Nervosa) and send them home” or, “we won’t waste resources trying to help them, because if they have not recovered by now, they never will”.
As a person who regained freedom to eat three meals and three snacks daily after 44 years with an eating disorder, I am an ardent advocate for the many people in their 30s, 40s and beyond, who suffer silently, suppressed by shame and stigma, with an eating disorder.
There is hope at every age. I steadfastly believe this. However, to build on hope, we need better access to appropriate care and support.
In Australia, we are making encouraging advances. In 2019, new Medicare benefits were introduced to support a model of evidence-based care for eligible patients living with an eating disorder. The benefits include up to 40 sessions of evidence-based eating disorder psychological treatment (in a 12-month period).
Eligibility is tested by completing an Eating Disorder Plan with a qualified medical practitioner. Last week, I filled out the boxes on this form with my local GP and several issues became clear.
Firstly, there was an emphasis on weight. Weight is important, but let’s remember this is an illness in the mind. We can be weight-restored but when we have had the illness for a long time, the eating disorder thoughts can remain deeply and firmly embedded. It takes time to develop healthy-self thoughts, to reconnect with our true self, and discover our identity, that is, who we are, without the eating disorder. For older women, recovery is not so much about body image either. It’s more about developing a sense of who we are, and strengthening our self-belief, to repel the bully eating disorder’s constant put-downs and torment plus, the misconceptions that exist in our society.
Secondly, toward the end of the extensive questionnaire, I was asked if I had missed a period recently, and if so, for how many weeks (I am presuming this question would not be presented to people who did not tick the ‘Female’ gender box at the start of the Plan).
The young male GP, sitting beside me as I ticked the boxes on his computer screen, laughed with me. We had to laugh. The questions were so inappropriate. The loss of menstruation is an important symptom for young women, but 20 years had passed since I had a hysterectomy and there was no box to explain this. It was like putting square pegs in round holes. We did our best.
Ideally, the GP and I agreed, we need two questionnaires to cater for young and older age groups.
Ideally, we need a lot more focus on listening to, supporting, and encouraging adult eating disorder patients to improve their life quality.
Anne, a woman in her late 40s, who has been a frequent inpatient due to her anorexia nervosa for many years, provides the following insights on care for her age group today.
Hospital admission – the downside
- There is what I call a boot camp mentality. The days are strictly structured from start to end with very little peace or respite. We are treated as children. This may be okay for younger ones used to the structure of school/university and used to taking instruction from adults. But that’s much, much, harder for adults to deal with and creates resentment, rebellion, and disengagement. Adult and adolescent eating disorders are very different, yet the programs are one size fits all.
- The programs work on a reward and punishment model. Do the right thing and gain a set amount of weight and get rewarded with leave and other minor privileges; do the wrong thing, that is, not complete meals or gain the required weight, and be punished with no leave and even less freedom. Related to this, the treatment team also uses food as punishment – for example, get caught exercising or purging, or simply be unable to complete a meal, and you are made to have an extra supplement. This reward/punishment system replicates what the eating disorder already does – just in the opposite direction. Hardly helpful.
- Staff patient ratios are too high – that means staff are busy and it can be hard to ask for help when it’s needed – this just leaves more space for the eating disorder to torture you.
- The private hospital system is all about money. Eating disorders require longer admissions than other units to work effectively, so we (adults with long-term eating disorders) are bad for business and doctors are pressured to set the bar high to discharge us faster.
- A stigma is attached to eating disorders. For example, skinny girls who think they are fat; it’s a self-inflicted condition, among other inaccuracies. This leaves us feeling inferior and unwanted.
- We are perceived as guilty and treated with suspicion until we can prove ourselves innocent through compliance with the rules.
Anne and her friend Sam, another long-term ED patient, agree on these issues as do other chronic sufferers. Anne writes:
“We have raised all these issues many times, but nothing seems to change for the better. We don’t seem to have a voice in this at all.”
Treatment for adults – ideally
Anne’s decades-long battle with anorexia nervosa makes her ‘expert by experience’ in eating disorder treatment
“What I think would make for a better program for chronic ED patients is broadly the reversal of the current treatment problems,” Anne said. “What I’m about to say is an ideal – I accept there are plenty of practical barriers to it:
- “Firstly, adults need to be treated as adults and given more autonomy to follow the guidelines. This would mean having two separate streams – or even separate locations for adults and for those say, under 25. The illnesses are different and need to be treated as such.
- “The hardest part of treatment often occurs immediately on discharge from hospital. We go from 24/7 treatment to nothing until an outpatient appointment up to three or four weeks down the track. There needs to be a follow up day program, aimed at long term cases, that isn’t dependent on BMI as is the case currently. Also helpful at this time would be some one-on-one mentoring preferably with someone who has beaten the illness after a long time and understands the challenges – it’s a role I would like to play in future. There also need to be a mechanism for quick readmission if needed – not weeks on a wait list while things go from bad to worse.
- “More generally, food and weight should never be used as either reward or punishment – it just gives the ED validation for what it already tortures us with. Reward should be based on effort and cognitive progress, not numbers on a scale.
- “There needs to be more compassion and understanding of the complexity of the illness from both staff and hospital administrators – they need to be aware that we didn’t choose to have the illness. Hopefully, wider acceptance that we had no choice, will help to reduce the stigma attached and see us treated as an equal with other mental illnesses.
- “Nurses need to have training in eating disorder care before working with us.”
The five points recommended to improve care for long-term ED patients would form part of an ideal solution, however Anne accepts resources aren’t available to provide this level of support. Therefore, she says, more funding is needed — either government or private — to provide training and put services in place. As well, potential patients need to be consulted on what they believe will be helpful for them.
Other issues in adult units – and reintegrating into the community
There are some smaller issues for adult units (age 18 and over), like having hot drinks available on the unit (in sensible quantities) and patients being allowed to bring in their own snacks – both of these are currently banned in hospitals that Anne has admissions. “If individuals find that too hard or triggering then they can work through it with their therapist- don’t punish the whole unit over it,” Anne says.
“I would also like to see a lot more focus on helping long term sufferers reintegrate into the community – and be able to do something with meaning and purpose. At the moment, it’s all or nothing. When I left hospital last week, I had been there for seven weeks with no leave, except for two hours on the last weekend – then suddenly I’m back in the real world.
“Over the years I have become institutionalised and suddenly being alone has left me scared, confused and feeling I can’t cope with life – especially not with a low BMI. All I want is to go back to safety.
“I’m left feeling I need to prove myself sick enough – the eating disorder loves this, of course. I don’t know what step-down support can be offered, but anything will be better than what I always get.
“It’s proving very difficult at home. I knew I wasn’t well enough to leave when they sent me home – but I had been there too long. Unfortunately, that means I’m paying the price now – every day, at home alone, it gets harder to push myself through the same painful routine.
“The eating disorder can sense I’m without the 24-hour support and is getting his way more often than not – and I don’t have the strength to fight him off alone.
“There isn’t a clear next step in treatment for the eating disorder. I have to wait more than five weeks until I see my psychiatrist again and I am on a two-month wait list to see a specialist psychologist.
“There really is no step down of support for people like me – the day programs require a minimum BMI of 17 – mine is lower than this so it’s no use to me. My support coordinator is looking into respite care for me – that’s about my only hope.”
Triggering comments – please avoid
Health professionals, in addition to family members and friends, can assist people with long-term eating disorders by avoiding the uttering of triggering statements. Anne shares a few examples of words said to her, that need to be avoided at all costs:
- Being told how much better I looked but then how much worse I looked within the space of days! Don’t know who to believe.
- Being told I was behaving like a petulant child by a night nurse because I wouldn’t go to bed when she wanted me to – I was 47 and capable of making my own bedtime decisions.
- And the worst one – being told twice by doctors at my local public hospital that I was “a waste of resources” – one was a psychiatrist. I was too stunned to reply.
Take home message
“While current programs may assist younger patients and those with recent onset, a lot more needs to be done to treat older and chronic patients better. We need the skills to function in the ‘real’ world and be treated with some of the empathy and compassion our eating disorders so often deny us.”