Males with eating disorders and caregivers need recognition and support too

Males with eating disorders and caregivers need recognition and support too

This sixth and final post that June Alexander has adapted from Alykhan Asaria’s article on improving eating disorder care for underserved groups, discusses two more underserved groups – a) males and b) caregivers and loved ones – together with the conclusion.

Males

Male eating disorder sufferers are underserved due to their gender. Because male eating disorder sufferers do not fit the inappropriate Skinny White Affluent Girl (SWAG) eating disorder stereotype, unaware healthcare professionals are more likely to underdiagnose or misdiagnose them.

However, males account for approximately one-third of people who report eating disorder symptoms in the community, particularly symptoms of other specified feeding or eating disorder (OSFED) and Binge Eating Disorder (which are also under-recognised/underappreciated eating disorders generally).

Clinical education and training are needed to increase healthcare professionals’ awareness and understanding of the occurrence of eating disorders in males. Male eating disorder sufferers also tend to experience higher levels of stigma in healthcare and their communities, which may then be internalised and may deter help-seeking. As stigma (including self-stigma) is a broader problem that also affects other underserved groups, it will be discussed more in a future article.

Despite being a cisgender male with a well-established diagnosis of anorexia nervosa, I have often been referred to as a female by mental health professionals. In my experience, anorexia nervosa patients are almost always assumed by default to be females. While I do not believe that gender-affirming care would help me, gender-disaffirming care is certainly very unhelpful. Therefore, I advocate gender-neutral care, which involves treating patients as individuals, undefined by their gender.

Inclusivity of all genders is essential in care environments

Care environments, including treatment materials and resources, must be more inclusive of all genders. In 2022, as part of my involvement in QI for eating disorder services in South London, I reviewed the welcome booklets of several eating disorder inpatient units. In all of them, there was no reference to males.  Including male examples/considerations in resources like these would make them more ‘welcoming’.

Likewise, I believe that eating disorder treatments should be approached in a gender-neutral way. Traditional diagnostic and treatment models are biased towards females. Restrictive eating disorders in males are usually linked to muscle dysmorphia, as exemplified by the colloquial and male-centric label of ‘bigorexia’.

These attributions are often misguided. For example, although I have desperately wanted to be muscular since a very young age, and weight training was a major hobby, I now restrict what I eat despite knowing this makes me look weak and (in my subjective mind) effeminate.  Furthermore, I can no longer weight train because my bones cannot withstand many weight-bearing activities.

In this and many other ways, self-starvation has made me the opposite of who I want to be, preventing me from doing what I want.

Finally, I urge more medical awareness of the physical health complications associated with eating disorders in males, which are no less severe than those associated with eating disorders in females. Several studies suggest higher mortality rates and/or earlier mortality in males with anorexia nervosa and bulimia nervosa.

Furthermore, in my experience, the interlinked hepatic, endocrinological, and osteoporotic effects of food restriction in males are vastly underappreciated. Studies have shown that osteoporosis tends to be more severe in male eating disorder sufferers.

Caregivers and loved ones

Underserved caregivers of eating disorder sufferers include parents, siblings, partners, children, and friends. My definition of ‘caregivers’ includes all loved ones involved in an eating disorder sufferer’s care, even if their involvement is informal or non-physical.

I deliberately use the word ‘caregiver’, as opposed to ‘carer’, to emphasise that care given by caregivers is not recognised in the same way as care provided by care providers, despite caregivers such as my mum and brother being silently depended on by care providers.

Unfortunately, eating disorder caregivers in the UK report predominantly negative experiences that are contrary to guidelines produced by the charity Beat and the Academy of Eating Disorders.

It is in the best interests of healthcare providers to support the caregivers on whom they depend. Hence, caregivers need to be treated as allies rather than obstacles. This requires all healthcare services to actively engage with and consistently involve them.

Transition from adolescent to adult care must be seamless

Engagement and involvement must not cease when young eating disorder patients are transferred to adult mental health services, as often happens in the UK and comparable countries due to differences in treatment philosophies.

Young eating disorder patients’ care needs and the value of their caregivers do not suddenly change on their 18^th birthdays. Moreover, young eating disorder patients must not be sent to “inappropriate out of area placements” more than 100 miles away from their families.

Regarding policy, I suggest that caregiver support plans be created at initial caregiver assessments. These plans may outline how caregivers will be supported (practically, financially, and emotionally) and the level of caregiver involvement that has been consented to.

Anecdotally, healthcare professionals often exclude caregivers because they fear breaking confidentiality rules.

Caregiver support plans may be attached to and/or integrated within patients’ care plans, thereby making them easily accessible to unfamiliar Healthcare professionals.

Psychoeducational interventions have been shown to alleviate caregiver burden and improve patient outcomes. These may include practical and skills-based workshops and training resources, tools and guides [e.g., The New Maudsley Approach, FEAST Caregiver Skills Toolkit, Meal Support Training, Developing Dolphins Raising Resilience, Harnessing Hope, Anchor, Endeavour, and Nexus.  Furthermore, caregivers may be directly supported through one-to-one therapy, couples therapy, and family peer support/mentorship. A future article will discuss family therapies and other treatments.

Most of the aforementioned interventions and resources are tailored for parent caregivers. Little support is provided for siblings and partners who want more help with issues such as managing siblings and intimate relationships.

I echo the sentiments of the sibling caregiver Alisha Mah, who, like my unacknowledged brother, is one of the “unsung heroes” that provide “a beacon of hope and strength” to people like me. The NHS needs him and my mum to keep me alive and out of their hospitals.

Conclusion

This (six-part) article intends to serve as a foundational resource for guiding improvements to eating disorder care. Using my lived experiences, independent research, and involvement in the underappreciated field of QI, I have identified 12 underserved groups and given specific recommendations on how eating disorders may be improved for each.

Besides integrating research, clinical practice, and QI, this article uniquely brings together different underserved groups, recognising they are all underserved in intersecting ways.

Eating disorder sufferers and caregivers are also an underserved group as a whole in general mental health care, and a future article will discuss broader considerations for improving eating disorder care. These considerations include stigma, research biases, inadequate clinical monitoring and diagnosing, poor-quality treatments, disorganised service transitions, systemic problems and inefficiencies, and underfunding and under-resourcing.

I have more to learn from others with lived experiences. Therefore, I hope this publication prompts deeper discussions led by experts based on their own experiences. As I learn more, my thoughts and ideas will be refined and developed.

Underlying all is the uncompromising message that eating disorder sufferers and caregivers deserve to be treated with compassion, hope, empathy, appreciation, and patience (CHEAP).

They deserve the best care that unconditional positive regard can afford.

Aly’s complete article

To read Aly’s complete article, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Watch for further articles by Aly on  www.lifestoriesdiary.com/blog