Severe and Enduring Eating Disorders

There is a tree that takes 5 to 10 years to flower, yet, it still needs watering, feeding and taken care of, its roots growing and absorbing nourishment underground over the years until ready.

Sometimes we don’t immediately see the efforts of our hard work in treatment. The time spent at our psychologists office or dietitian’s room feels hard to digest without any sparkly change emerging as we exit the rooms.

Severe and enduring eating disorders (SE-EDs) are tough, they effect quality of life, the ability to connect with others, to engage and maintain study or employment and to regulate ones emotions.

For the sufferer, it may feel like “Its hopeless, I’ve failed”, “I’m too hard, I can’t do this”.

SE-EDs can come about through a variety of different circumstances including unaddressed comorbidities, complex trauma, an under-developed capacity of self. Treatment at times including weight changes may mean increased connection to body and activation of trauma symptoms associated with body, which sends us reeling. Restriction or eating disordered behaviours may provide respite to a sufferer, providing a safety in emotional anaesthesia. Sometimes it is easier to stay sick when you haven’t yet built the capacity to regulate intense emotions with your therapist. Guilt around taking up space in the world may be difficult to deal with, the ED may help you feel small, numb, safe. Sometimes we avoid peeling the onion due to fears around fragmenting, dissolving or being ‘alone’. Invalidation of illness from the ED or others including family or health care professionals can get us stuck in utilising treatment. And don’t forget treatment can be costly and without funding support, can impact access to care and pathway to recovery. It can be hard with neural pathways getting stuck and habitual in the ED world.

It can be exhausting having to fight the ED at every turn.

What to do?

SE-ED treatment approaches need to be different. Treatment is about creating a space for engagement, dignity, stability, informed and inclusive care. Creating a space for quality of life and life outside of ED is important.

Finding a team with a curious, considered approach who understands SE-EDs is essential. Engaging in holistic spaces that help cultivate a safe and empathic space to help you cultivate ‘self’.

Your treatment team may consist of:

Psychologist: to help foster space for ‘self’, increase connections and life outside of ED walls. To have a space for reflection into deeper issues that maintain the ED.
Dietitian: to collaboratively set goals with, eat together with, support to eat as adequately and regularly as possible, support to eat to be medically well enough to engage in outpatient therapy, to build up confidence and problem solve with regarding social eating and myth busting food ideas.
GP: for case management and coordination, medications, management of all health concerns, medical monitoring, access to Medicare care plans, hospital admission paperwork, referrals.
Psychiatrist: to review care plans and collaborate on management of treatment and medications, diagnosis regarding mental health.

Finding the right team matters, not all dietitian’s are the same, not all psychologist’s are the same. Clinicians are like shoes, you just need to find the right fit for you, it may involve trying a few on.

What about hospital?

There are currently no targeted programs in hospital for SE-EDs, there is one outpatient SE-ED specific program currently running in Victoria by EDV. Hospital can be extremely helpful and also to some extremely distressing. Hospital is a temporary tool to stabilise and it may be necessary when medically unstable or due to safety concerns, this should be done together with your team as an inclusive discussion to maximise your autonomy and consent. Admission goals should be clear and discharge planning clear and collaborative with your outpatient team.

What should my overall goal be?

Depends! If you have a SE-ED you are still a human being with wants and needs outside of ED. Often goals you set with your team may be around being as nutritionally and medically stable as possible to engage with therapy, family and friends, or meaningful employment. Sometimes goals are big and often they are teeny tiny and thats ok too.

What happens when I get stuck?

Don’t panic! Slow down. Be as open as possible with your team regarding how you are feeling about progress. Sometimes maintaining progress is hard work. Sometimes things become harder before they become easier. Your team will be able to collaborate with yourself and amongst themselves to help pave a way forward.

What if my family/friends/carers just don’t get my ED?

Check out our resource all about what to say and what not to say for your personal support team.

What resources do you recommend?