Trigger Warning: This blog contains discussions around eating disorder behaviours, mental health, and care received by healthcare professionals. These are my personal experiences and reflections. This post is not intended as an attack on any individual or organisation.
Managing an eating disorder is challenging enough on its own, but when it's combined with Type 1 diabetes, the complexities multiply. Many people with these dual conditions find themselves in acute hospitals while waiting for a bed in a specialised eating disorder unit. Although acute hospitals offer essential medical stabilisation, they often lack the specialised care required to treat both the eating disorder and diabetes effectively. In this post, we’ll delve into the difficulties of managing these conditions simultaneously in an acute hospital setting and the impact it has on patients' well-being.
The Complex Interplay of Eating Disorders and Diabetes
When Type 1 diabetes and an eating disorder occur together, they create a unique set of challenges that complicate both diagnosis and treatment. Managing diabetes requires precise monitoring of blood sugar levels, consistent carbohydrate intake, and careful insulin administration. On the other hand, eating disorders are often characterised by an unhealthy relationship with food, severe calorie restriction, or binge-purge cycles.
In a specialised unit, treatment teams have a deep understanding of this interplay and know how to tailor care to address both conditions simultaneously. In acute hospitals, however, the focus is often on immediate medical stabilisation without considering the complex ways in which diabetes management and disordered eating behaviours interact. This lack of integrated care can lead to insufficient treatment, where each condition is addressed in isolation rather than as part of a broader, interconnected problem.
Lack of Specialised Knowledge and Diabetes Expertise
Acute hospitals typically have teams that are well-versed in managing diabetes and teams that focus on general eating disorder care, but few have experts who understand how these two conditions overlap. The treatment approach for someone with both conditions is not as straightforward as for someone dealing with just one. For example, individuals with this dual diagnosis might engage in "diabulimia," or T1DE as it is now known behaviours. This is where they intentionally reduce or skip insulin to lose weight—a behaviour that is extremely dangerous but not always recognised in non-specialised settings.
It is also possible to be diagnosed with a ‘traditional’ eating disorder such as Anorexia or Bulimia as a diabetic, where there is NO manipulation of insulin in order to loose weight. This also required a nuanced understanding of both the psychological and physiological aspects involved.
In an acute hospital, the focus is often on stabilising the physical symptoms rather than addressing the underlying mental health needs. Without expertise in this area, medical professionals in acute hospitals may focus solely on normalising blood glucose levels without addressing the underlying eating disorder behaviours. This narrow focus can lead to a cycle where patients are stabilised physically only to relapse quickly, as the psychological drivers of their disordered eating and insulin misuse remain unaddressed.
Most staff in these settings are not specialised in eating disorders, and they may not fully grasp the intricacies of these conditions. This can lead to a narrow approach that focuses on weight gain or symptom control without delving into the emotional, cognitive, and behavioural aspects that drive the disorder.
The lack of specialised training can also lead to misunderstandings and stigmatisation. Patients might encounter healthcare professionals who unintentionally minimise their condition, seeing it as a problem of self-control rather than recognising the deep-seated psychological struggle involved. This misunderstanding can feel isolating for patients, leaving them feeling misunderstood and dismissed.
The Risks of Inconsistent Blood Sugar Management
For those with Type 1 diabetes and an eating disorder, managing blood sugar levels is a tightrope walk, balancing insulin doses with nutritional intake. In an acute hospital, where the goal is often immediate stabilisation, the rigid treatment protocols can inadvertently cause more harm than good. Standardised meal plans and insulin dosing might not take into account the individual’s specific relationship with food, fears, or behaviours related to their eating disorder.
Acute hospitals are not typically equipped to provide the kind of nutritional and psychological support that patients with both diabetes and an eating disorder require. The lack of a personalised approach can lead to severe fluctuations in blood sugar levels, increasing the risk of life-threatening conditions like diabetic ketoacidosis (DKA) or hypoglycemia, while also reinforcing unhealthy behaviours around food and insulin use.
Psychological Distress and Fear of Insulin
For many individuals with both an eating disorder and Type 1 diabetes, insulin itself can become a source of fear and anxiety. The misconception that insulin leads to weight gain is a common barrier to treatment adherence among this population. In a specialised eating disorder unit, mental health professionals work closely with patients to reframe their thinking around insulin, help them understand its necessity for survival, and address body image concerns in a compassionate way.
However, in an acute hospital setting, where the focus is on physical stabilisation rather than psychological support, this nuanced aspect of treatment is often overlooked. Medical staff may lack the training to address these fears in a therapeutic manner, leading patients to feel unsupported and misunderstood. This disconnect can make patients more resistant to insulin treatment and deepen their ambivalence toward recovery.
Rigid Medical Protocols vs. Individualised Treatment
One of the most challenging aspects of being treated in an acute hospital is the rigid, protocol-driven approach to care. While necessary for many medical conditions, this standardisation often fails to address the unique needs of eating disorder patients especially ones who also have type 1 Diabeties. These rigid medical protocols might involve discontinuing the use of technology like Continuous Glucose Monitors (CGMs), insulin pumps (IPs), or Hybrid Closed Loop (HCL) systems. As a result, patients may be required to revert to Multiple Daily Injections (MDI), which can significantly increase their anxiety levels, making an already stressful situation even more overwhelming.
In a specialised eating disorder unit, treatment is holistic and personalised, involving dietitian's, therapists, psychologists, and medical doctors who collaboratively create an individualised care plan. Acute settings typically lack this multidisciplinary approach, limiting the effectiveness of treatment and potentially leading to a cycle of physical stabilisation without real progress on the mental health front.
There is an important and frustrating issue here that highlights a gap in the otherwise valuable care provided by specialised eating disorder units. While these units excel in offering holistic treatment for the psychological and emotional aspects of eating disorders, their lack of understanding and support for diabetes technology often undermines effective diabetes management. This disconnect can force patients to abandon their familiar, personalised tools like Hybrid Closed Loop (HCL) systems, Continuous Glucose Monitors (CGMs), or insulin pumps, and revert to Multiple Daily Injections (MDI), which disrupts their routine and control over their condition.
My experience of being forced back to MDIs, despite proven success with the HCL system, raises a critical question about whose safety is truly being prioritised. The decision to move me away from advanced diabetes technology seems to be based on the staff's lack of knowledge or comfort with these tools, rather than what’s actually best for my health. When your Time In Range (TIR) drops from 97% to below 50% due to this change, it's clear that your diabetes management has been significantly compromised by a system that should be designed to support your overall well-being, not hinder it.
Its understandable to question how this approach can be justified, especially when the aim of treatment should be to optimise both your mental and physical health. It’s crucial for specialised units to close this knowledge gap and integrate diabetes technology into their care plans so that patients like me can maintain the best possible control over both their diabetes and eating disorder recovery. Without this integration, it’s hard to see how the current approach serves the patient’s best interests.
Triggering Interactions with Food and Nutrition
The way food is handled in acute hospitals can be another significant issue for individuals with eating disorders. Meals in these settings are often standardised, with little to no flexibility or consideration for the specific needs of someone with an eating disorder. Without proper meal planning and therapeutic support, eating can become even more stressful, and the process of weight restoration can feel punitive rather than healing.
Moreover, without guidance from specialised dietitian's trained in eating disorders, patients may feel overwhelmed and unsupported during mealtimes. Staff in acute hospitals may not understand the anxiety, guilt, or fear that patients experience around food, leading to interactions that inadvertently reinforce negative emotions and behaviours.
Emotional Distress and Increased Anxiety
Being in an acute hospital without a clear timeline for transfer to a specialised eating disorder ward can cause significant emotional distress. The uncertainty of not knowing when they will receive appropriate care can amplify feelings of hopelessness, frustration, and anxiety. Patients often feel like they are in limbo, physically present in a hospital but mentally waiting for the moment when their true recovery journey can begin.
This sense of waiting can be demoralising, especially when patients see their physical symptoms being treated while their psychological needs remain unmet. The lack of progress in their mental health care can lead to a feeling of being stuck or even worsen their condition, as they may feel misunderstood and unsupported in their current environment.
Disruption of Continuity of Care
Continuity of care is crucial in treating eating disorders, as consistent therapeutic relationships and a stable environment foster trust and promote progress. Unfortunately, when patients are in an acute hospital, they often experience a fragmented approach to treatment. They may see a revolving door of different healthcare professionals, each with varying levels of understanding about their condition.
This discontinuity can break the therapeutic alliance, causing setbacks in the patient’s emotional and psychological healing. When a bed finally becomes available in a specialised unit, the transition itself can be difficult, as patients must adjust to new routines, expectations, and a different team of professionals. This shift can be unsettling, making it harder to build trust and fully engage in the therapeutic process.
Conclusion: A Call for Better Integrated Care
While acute hospitals play a crucial role in managing immediate health crises, they are not ideally suited for the nuanced needs of eating disorder patients. The lack of specialised care, a supportive environment, and individualised treatment can make the recovery process more challenging and can even set patients back in their journey toward healing.
For meaningful recovery, it's essential that individuals with eating disorders receive care in settings designed specifically to address the complex interplay of psychological and physical aspects of these conditions. The current system needs to improve its transition processes and ensure that patients aren't left in limbo in acute hospitals while they wait for the right care.
Increasing the availability of specialised beds, enhancing training for acute hospital staff, and developing clearer pathways for transitioning to eating disorder units are crucial steps in bridging this gap. Only then can we provide patients with the environment and support they need to recover fully and live healthier, more fulfilling lives.
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