Comorbidities and eating disorders

Comorbidities and eating disorders

Improving eating disorder care for underserved groups

In the fourth post that June Alexander has adapted from Alykhan Asaria’s article on improving eating disorder care for underserved groups, three more underserved groups are discussed – people with comorbidities, neurodiverse people, and digitally excluded people.

People with comorbidities

Some people have comorbidities that are interlinked with their eating disorders. The links are often bidirectional and inter-reinforcing, and the comorbidities may be psychiatric or physical.

These individuals are underserved when health professionals fail to recognise or take their comorbidities seriously. As well, clinical education/training is similarly needed to increase healthcare professionals’ awareness and understanding of common eating disorders and comorbidities that are under-recognised/underappreciated.

Just like Type 1 diabetes and disordered eating sufferers, people with comorbidities must receive integrated/holistic care provided by multidisciplinary and interdisciplinary services.

Besides working together between different services, individual services need adequate training on the conditions (eating disorder or comorbidity) in which they do not specialise, especially if patients with comorbidities are seen by only one service.

Need for integrated care

Despite my eating disorders and obsessive-compulsive disorder being intertwined, I have never been able to receive care from both eating disorders and obsessive-compulsive disorder services at the same time, and efforts to provide integrated treatments have consistently failed due to systemic problems and my male gender.

In this article, I will give examples of significantly interlinked eating disorders and comorbidities that I have observed (as a volunteer) or experienced. The examples are not exhaustive.

Psychiatric comorbidities that may be significantly interlinked with eating disorders and are under-recognised/underappreciated include:
* Obsessive-compulsive disorder
* Body dysmorphic disorder
* Anxiety disorders
* Major depression (often involving self-harm and suicidal thoughts, which largely account for the high mortality risks associated with eating disorders, including anorexia nervosa)
* Post-traumatic stress disorder (often related to historic abusive treatments) and
* Substance use disorders (e.g., alcohol use disorder, opiate use disorder).

Although I know several eating disorder patients who have been diagnosed with emotionally unstable personality disorder/borderline personality disorder, I believe that potentially unreliable/prejudicial personality disorder diagnoses should not be used to inform eating disorder care considerations.

Physical comorbidities that may be significantly interlinked with eating disorders and are under-recognised/underappreciated include gastrointestinal and motility disorders (e.g., gastroparesis, early satiety, dyspepsia, dysphagia), diabetes (type 1 and type 2), connective tissue disorders (e.g., Ehlers-Danlos syndrome), myalgic encephalomyelitis and fibromyalgia.

Diagnostic overshadowing

Diagnostic overshadowing occurs when eating disorder patients’ comorbidities are not recognised or appreciated because the eating disorder diagnosis eclipses them, or vice versa. For example, Downs (2024)articulated how “physiological phenomena I experienced were all explained away as a product of my eating disorder, only ever a consequence rather than a component, or even the cause, of my illness”.

The symptoms of eating disorders and comorbid psychiatric conditions may also overlap. For example, while I am eating, my eating disorder rituals and obsessive-compulsive disorder rituals are so intertwined that I cannot attribute them to a single diagnosis.

Anecdotally, other psychiatric comorbidities with potentially overlapping symptoms include:
* ARFID and emetophobia (emetophobia involves the fear of vomiting); anorexia nervosa and depression (depression can involve reduced appetite);
* Binge eating disorder and depression (so-called ‘atypical’ depression can involve increased appetite);
* Restrictive eating disorders and bipolar disorder (manic episodes can involve skipped meals and overactivity);
* Restrictive eating disorders and
* Body dysmorphic disorder (eating disorders often involve body image fears related to the female ‘thin ideal’ or male ‘muscular ideal’).

Clinical formulations may be useful tools for ‘unpicking’ the causes of symptoms. In cases where symptoms cannot be neatly separated to benefit diagnostic criteria, the term ‘diagnostic overlapping’ may be more appropriate than ‘diagnostic overshadowing’.

Regardless, in line with the ‘CHEAP’ care approach, I urge healthcare professionals to actively and curiously listen to their patients, be mindful of implicit attribution biases that they may have, and recognise that eating disorders sufferers are experts on their own experiences.

People with neurodevelopmental conditions (neurodiverse people)

Some people have coexisting neurodevelopmental conditions that are interlinked with their eating disorders. The links are often bidirectional and inter-reinforcing. These people are underserved when their coexisting neurodevelopmental conditions (their neurodiversity) are not recognised or taken seriously by healthcare professionals.

Again, clinical education/training is vital to increase healthcare professionals’ awareness and understanding of neurodevelopmental conditions such as autism, attention deficit hyperactivity disorder (ADHD), learning disabilities and tic disorders/Tourette’s syndrome. Integrated/holistic care provided by multidisciplinary and interdisciplinary services is essential.

In addition to joint working between different services, individual services need adequate training on the conditions (eating disorder or neurodevelopmental condition) in which they do not specialise, particularly if neurodiverse eating disorder patients are seen by only one service. An autistic friend whom I met in a hospital more than 10 years ago has continually been bounced like an object between various services, none of which want to take responsibility for treating her overlapping difficulties.

Overshadowing may also occur when eating disorder patients’ neurodevelopmental conditions are not recognised because the eating disorder diagnosis eclipses them, or vice versa.

Anecdotally, the most frequent eating disorders and co-occurring neurodevelopmental conditions are likely to be autism, ADHD, and learning disabilities.

The prevalence rates of autism in eating disorders populations have been estimated to range from 8 per cent to 37 per cent. Although ADHD has received much less research attention, a meta-analysis by Nazar et al. (2016) found that people with eating disorders are significantly more likely to be diagnosed with ADHD and vice versa. This may be due to shared impulsivity/reward deficiency features (often related to binge eating) and shared sensory sensitivities (often associated with restrictive eating).

There has been little research on eating disorders and co-occurring learning disabilities, despite people with learning disabilities being frequently reported as the most “neglected and tortured” of all patients in general mental health care.

An autistic eating disorder patient with a co-occurring learning disability told me that eating disorders professionals caring for her lacked ‘theory of mind’, which is ironically a term used by healthcare professionals/researchers to describe people with autism and learning disabilities.

Neurodiversity-affirming care

Healthcare professionals need to appreciate the difference between eating disorder symptoms and neurodiversity traits/behaviours. I interpret neurodiversity-affirming care as being neurodiversity-appreciating care that responds flexibly to neurodiverse patients’ eating disorders without pathologising them.

Hence, healthcare providers/professionals may need to adapt or tailor their care environments, communication styles, treatment approaches, menus/meal plans, assessment methods, and other relevant aspects of care.

Specific examples of neurodiversity-affirming care adaptations and improvements are provided in Table 1 below. Many of them have been adopted by South London and Maudsley NHS Foundation Trust’s (SLaM) Pathway for Eating Disorders and Autism Developed from Clinical Experience (PEACE). Because autism and other neurodevelopmental conditions have shared features and high co-occurrence rates, I believe that PEACE adaptations and improvements would also benefit eating disorder patients with different types of neurodiversity.

PEACE introduced regular huddle meetings, team collaboration exercises, and case discussions between multidisciplinary teams to support healthcare professionals in providing neurodiversity-affirming care. I further suggest that aids, such as patients’ clinical formulations, be provided to help healthcare professionals distinguish between eating disorder symptoms and neurodiversity traits/behaviours. Staff may also appreciate guidance and training on making neurodiversity-affirming accommodations for some patients without making others feel underserved.

Table 1: Examples of neurodiversity-affirming care adaptations/improvements

Aspect of care

Examples of adaptations/improvements

Care environments
Neutrally painted walls and dimmable lightbulbs for patients who are hypersensitive to bright colours. Soundproofed walls for patients who are hypersensitive to loud noises. Sensory rooms for patients who have sensory-relieving and/or sensory-seeking eating disorders. Access to sensory ‘first aid’ tools [e.g., headphones, ear defenders, weighted blankets, essential oils, dried lavender, putty, ‘smart toys’.

Communication styles
Clear and explicit communication styles, without the use of metaphors and open-ended questions. Visual/written representations of verbally communicated information. Communication aids such as ‘conversation cards’, ‘communication passports’, and ‘traffic light’ systems.

Treatment approaches
Practical/skills-based therapy approaches [e.g., dialectical behaviour therapy (DBT)] for patients who struggle to engage with cognitively demanding therapies. Manualised treatment approaches for patients who prefer predictability. Shorter and/or more frequent therapy sessions for patients who struggle to maintain their attention for long periods. Individual ‘check-ins’ before and after group therapy sessions. Cognitive remediation therapy (CRT) and cognitive remediation and emotion skills training (CREST) may be used as adjunctive therapies for patients with cognitive inflexibility traits.

Menus/meal plans
Clearly presented menus with illustrations and colour-coding. Options that are simple and predictable. Options that are mindful of sensory sensitivities (e.g., blander foods for patients who are hypersensitive to taste, condiments for patients who are hyposensitive to taste, smoother foods for patients who are hypersensitive to textures, rough foods for patients who are hyposensitive to textures).

Assessment methods
Use of neurodiversity screening tools during initial assessments, such as the autism spectrum quotient (AQ) for identifying autism traits, so that neurodiversity-affirming care adaptations can be planned. Notably, identifying autism traits helps inform patient-centred care, whether or not the assessed patient meets the criteria for autism.

Digitally excluded people

People who have an eating disorder and or are unable to engage with virtual (also called ‘digital’ or ‘online’ or ‘remote’) interventions are another underserved group. As a result of COVID-19 restrictions that started in 2020, face-to-face interventions have become more difficult to access in all areas of healthcare, including eating disorder care.

In September 2020, the father of a 16-year-old with anorexia nervosa explained that his daughter’s eating disorders worsened during lockdown because face-to-face contact was replaced with video calls, which, in his words, “is not the same as having that one-to-one interaction with the expert who can judge your mood, pitch the tone accordingly and think on their feet because you are in the room with them. It just didn’t work, and she hated it”.

People with an eating disorder and comorbidities or neurodevelopmental conditions that impair the ability to communicate/socially interact are more likely to be disadvantaged by digital healthcare interventions.

For example, as someone with social anxiety disorder and related body image fears, I cannot meaningfully engage with others over the phone, so my regular mental health appointments stopped when the first COVID-19 lockdown began in March 2020.

Additionally, people with conditions that cause social isolation are at a disadvantage. For example, as someone who previously faced the challenges of obsessive-compulsive disorder, primarily to attend in-person appointments, I rarely leave my residence except when necessary.

Contrary to popular belief, people who are socially avoidant due to distress-inducing conditions have not benefited from the virtualisation of health care.

Social avoidance may provide short-term relief from the distressing emotions triggered in outside environments but reinforces the emotions being avoided in the long term. It leads to resulting imprisonment (the ‘emotional lockdown’). Furthermore, social isolation and loneliness create optimal conditions for eating disorders to flourish.

Patient monitoring is more difficult via virtual interventions

Virtual interventions also make it difficult for healthcare providers/professionals to monitor the safety of patients with eating disorders. In my experience, warning signs of physical deterioration (e.g., weight loss, inability to get up from chairs, physical imbalances) can quickly go unnoticed for many months or until emergencies arise, particularly if a person with an eating disorder deliberately hides their symptoms.

Emergency care was the first type of in-person care I attended after the first COVID-19 lockdown began in March 2020. Likewise, it is challenging for healthcare professionals to detect suicidal ideation over the phone or through a screen. The high mortality risks associated with eating disorders, including anorexia nervosa, are not just attributable to physical health complications caused by malnutrition.

Virtual interventions can be effective for many people due to the associated practical conveniences, especially when offered as part of blended or hybrid approaches. I do not advocate reducing access to these interventions when they are in a patient’s best interests. In my view, the benefits are more likely to be felt after therapeutic relationships have been started through in-person contact.

I caution against patients being (implicitly or explicitly) pressured to accept virtual delivery modes because they do not want to burden healthcare providers or professionals with their physical presence.

Many people with an eating disorder, including me, already feel that we do not deserve to be seen in person by healthcare professionals, who we are repeatedly told have little time for us.

Notably, people who are socioeconomically or socio-geographically disadvantaged are more likely to lack basic digital skills [22 per cent of the UK’s population are unable to afford the technological devices and WI-FI required for communicating virtually, live in remote or underdeveloped areas where there is insufficient internet connection, and/or have no access to private spaces where they can speak confidentially and without distractions].

While high-quality virtual interventions can help people with an eating disorder who face transportation barriers, those individuals remain underserved if they have inferior access to in-person care.

Aly’s complete article

To read Aly’s complete article, go to: https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-024-01145-2
Additionally, Aly’s article will continue to be explored over the next few weeks on www.lifestoriesdiary.com/blog