How Time in Tight Range (TITR) helped contribute to my Eating Disorder and how I am challenging it.

"Time in Tight Range" (TITR) refers to maintaining blood glucose levels within a very narrow target range, usually more stringent than the standard recommendations for people with Type 1 diabetes. While keeping blood glucose within a specific range can be essential for diabetes management, striving for TITR can contribute to or exacerbate an eating disorder (ED) for several reasons:

1. Obsessive Focus on Control

• Perfectionism and Rigidity: TITR demands constant monitoring of blood glucose levels, insulin dosing, and food intake to stay within a tight glucose range. This level of precision can foster a perfectionistic mindset, which is also common in individuals with eating disorders. In the context of an ED, the desire to achieve perfect blood glucose control may translate into obsessive behaviours around food, insulin, and exercise, similar to how someone with an ED may obsess over calories, weight, or appearance.

2. Fear of Losing Control

• Fear of Hyper- and Hypoglycemia: Maintaining TITR can increase anxiety around eating or taking insulin. If you deviate from this tight range, you might experience hyperglycaemia (high blood sugar) or hypoglycaemia (low blood sugar), both of which come with unpleasant symptoms and potential long-term complications. The fear of high blood sugar may lead to restrictive eating behaviours to avoid glucose spikes, while the fear of low blood sugar might discourage proper insulin use or lead to binge eating to counteract lows.

3. Restrictive Eating Patterns

• Avoidance of Certain Foods: To stay within the tight range, people might avoid eating foods they perceive as “risky,” like carbohydrates or sugary snacks, to prevent blood sugar spikes. Over time, this can evolve into restrictive eating patterns, which are a hallmark of many eating disorders. For instance, carbohydrate restriction may initially be framed as a way to manage blood sugar, but it can quickly blur into disordered eating, especially if paired with a fear of weight gain.

4. Skipping or Reducing Insulin Doses

• Insulin Omission Risk: In some cases, people may engage in behaviours like reducing or skipping insulin doses to keep their blood sugar from dropping too low. This can be a dangerous form of insulin manipulation, often associated with diabulimia, where insulin is intentionally misused to control weight. Focusing on keeping blood glucose within a tight range may fuel the temptation to skip insulin to avoid low blood sugars or the perception of weight gain that can come with appropriate insulin use.

5. Reinforcement of Disordered Behaviors

• Positive Feedback Loop: When you successfully stay within the TITR, it can feel like a significant accomplishment, reinforcing strict or unhealthy behaviors related to food and insulin management. This can create a cycle where staying in the tight range becomes a measure of self-worth or success, much like weight or body shape might be for someone with an ED. Over time, this need for control over both diabetes management and eating can lead to extreme rigidity in eating habits, further embedding the eating disorder behaviours.

6. Emotional Toll and Anxiety

• Emotional Burden of Constant Monitoring: Constantly worrying about staying in a narrow glucose range can cause significant stress and anxiety. For someone prone to an eating disorder, this additional stress may exacerbate disordered eating behaviours as a way to cope with the overwhelming burden of diabetes management. The mental strain of trying to maintain perfect blood sugars, on top of managing an ED, can lead to burnout, further increasing the likelihood of engaging in harmful behaviours to regain a sense of control.

7. Body Image Concerns

• Weight and Body Image Distortion: Many people with Type 1 diabetes who strive for TITR are also concerned about the effects of insulin on their weight. Insulin is necessary to manage blood sugar, but its use can lead to weight gain, a trigger for those with eating disorders. Worrying about the impact of insulin on weight can drive restrictive eating, insulin restriction, or over-exercising, all of which can significantly contribute to an ED.

8. Social Isolation

• Avoidance of Social Situations: Maintaining TITR often requires careful planning and control over meals, which can make social eating situations stressful or undesirable. Avoiding social settings where food is involved can isolate you, which may worsen the eating disorder by reinforcing secrecy around food and feeding negative thoughts. Social withdrawal to maintain control over diabetes and food intake can intensify the eating disorder mindset, deepening the feeling of isolation and entrenching unhealthy habits.

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Breaking the Cycle

To address how TITR may have contributed to your eating disorder, it’s crucial to balance the desire for tight blood glucose control with a more flexible, compassionate approach to both diabetes and food management. Some key strategies include:

1. Working with a Multidisciplinary Team: A team of professionals, including an endocrinologist, dietitian, and therapist, can help you find a middle ground. This team can teach you how to manage your diabetes without letting the pursuit of perfect control dominate your life or fuel disordered eating behaviours.

2. Focusing on Overall Health, Not Perfection: Shifting the focus from perfect control (TITR) to overall health and well-being, both physically and mentally, can reduce the pressure to stay within an ideal range at all times. This includes recognising that fluctuations in blood glucose are normal and do not define your success or self-worth.

3. Challenging Perfectionism and Rigidity: Therapy, especially Cognitive Behavioural Therapy (CBT), can help address the perfectionism and black-and-white thinking that often underlies both diabetes management struggles and eating disorders. Learning to tolerate imperfection in blood glucose levels and being flexible around food choices is a vital part of recovery.

4. Self-Compassion and Mindfulness: Practicing self-compassion when you don't meet your TITR goals can help break the cycle of self-blame and anxiety. Mindfulness techniques can also help you become more aware of how your thoughts around blood sugar and food are connected, allowing you to address them in healthier ways.

By recognising how striving for TITR contributed to your eating disorder, you can begin to reframe how you approach both diabetes management and your relationship with food, working towards a healthier and more sustainable balance.

The Long Road to Eating Disorder Recovery: A Journey of Courage and Hope

Recovery from an eating disorder is not a linear path. It’s a winding road filled with ups and downs, moments of triumph, and periods of setback. It’s a journey that demands immense courage, relentless perseverance, and, above all, hope. For those who have walked this difficult path, each step forward, no matter how small, is a testament to our internal strength.

Living with an eating disorder is like being trapped in a prison of your own making. The relentless thoughts about food, weight, and body image consume every waking moment. It’s a life ruled by numbers—calories, pounds, and clothing sizes. These obsessions can overshadow everything else, leaving little room for joy or connection.

I have days where my disorder controls me completely. I wake up with a sense of dread, my mind immediately flooded with thoughts of what i will eat, what I wont eat, and how I make up for any perceived transgressions. The mirror is my enemy, reflecting a distorted image that never matches the reality what is in my head. The scale are my judge, jury, and executioner, determining my worth based on the number it displayed.

The decision to seek recovery often comes from hitting rock bottom. For me, it was sort of forced on me when the realisation hit that my eating disorder was not only destroying my body after a number of hospital admissions, but also stealing my life. I was tired—tired of the lies, the secrecy, and the constant battle in my mind. I knew I needed help, but admitting it was one of the hardest things I have ever had to do.

Reaching out for support is both terrifying and liberating. It means acknowledging that I have a problem and that I couldn’t fix it on my own. Something that i find extremely hard to admit as i am such a fiercely independent being not wanting to rely on others to 'Fix Me'. It has meant trusting others with my deepest fears and vulnerabilities. But it is also the first step toward reclaiming my life from the clutches of the disorder.

Recovery is a gradual and often arduous process. It involves unlearning harmful behaviours and beliefs while building new, healthier habits and mindsets. It’s about learning to nourish your body, not punish it. It’s about finding new ways to cope with emotions without turning to food or restriction.

Therapy plays a crucial role in my recovery. It provides a safe space to explore the underlying issues that have fuelled my eating disorder. I am learning to challenge the negative thoughts and beliefs that have taken root in my mind. I began to see food as fuel, not the enemy, and my body as something to be cared for, not controlled.

Having a support system is essential. My family and friends have become my pillars of strength, offering love and encouragement when I have needed it the most. They reminded me of my worth beyond my appearance and celebrated my progress, no matter how small. The eating disorder and Type one diabetes communities, both online and offline, also provided invaluable support. Sharing my story and hearing others’ experiences make me feel less alone and more understood. It makes me realise i am not going crazy. 

Recovery is not without its struggles and setbacks. There are days when the urge to return to old habits are overwhelming. Moments of stress or emotional turmoil often triggered a relapse. But each setback has taught me something valuable about myself and my journey. They reminded me that recovery is not about perfection but about progress. It’s about getting up after a fall and continuing to move forward.

As I am progressing in my recovery, I am rediscovering the parts of life that my eating disorder had stolen from me one step at a time. I find joy in activities that have nothing to do with food or weight. I started to appreciate my body for what it could do, not just how it looked. Relationships that had been strained by my disorder began to heal, and I was able to connect with others more deeply and authentically.

To anyone struggling with an eating disorder, know that recovery is possible. It’s not easy, and it requires immense bravery, but it is worth every effort. You are more than your disorder. You are deserving of love, health, and happiness.

Recovery is a journey, not a destination. It’s about learning to live in harmony with your body and mind. It’s about embracing the imperfections and celebrating the victories. It’s about finding peace and reclaiming your life.

If you’re on this journey, keep going. Reach out for support, be patient with yourself, and never lose sight of the hope that recovery brings. Each step forward is a testament to your strength, and every day is a new opportunity to move closer to the life you deserve.

How Much Insulin You Take in a Day Doesn’t Define You

You're absolutely right: how much insulin you take in a day doesn’t define you. This is such an important message for anyone managing Type 1 diabetes, especially if they're grappling with feelings of self-worth, body image concerns, or societal pressures.

Here’s why insulin needs don’t define you and some thoughts on embracing this mindset:

Living with Type 1 diabetes means that insulin is a crucial part of your daily life. It’s the lifeline that keeps your blood sugar in check and allows you to live a full life despite the challenges of the condition. However, for many people with diabetes, the amount of insulin they need each day can become a source of anxiety, guilt, or even shame. 

Insulin is a Tool, Not a Judgment

No two bodies are the same, and this is especially true for those managing Type 1 diabetes.

• Insulin as a Tool: Insulin is a life-saving medication that helps you manage your blood sugar, no matter how much or how little you need. The amount you take isn’t a reflection of your effort, health, or value as a person.
• Everyone’s body is different:  Factors like age, weight, activity level, hormones, and stress all influence insulin requirements. Comparing your insulin dose to others isn’t helpful because it’s not a one-size-fits-all equation.

Your Insulin Dose Reflects Your Body’s Needs

It’s also important to recognise that your insulin requirements can change over time. This is a normal part of diabetes management, not a reflection of failure.

• Insulin Requirements: Needing more or less insulin simply shows how your body processes carbohydrates and responds to external factors. It’s not “good” or “bad”; it’s just a biological response.For example:
• During growth spurts, illness, or periods of high stress, your body may need more insulin.
• Increased physical activity or changes in food intake may lower your insulin needs temporarily. Both are normal.

Shame Around Insulin Can Be Harmful

• Feelings around insulin: Feeling shame or guilt about taking insulin can lead to dangerous behaviours, such as skipping doses or under-dosing to reduce perceived weight gain. This puts your health at serious risk.
• Thinking about insulin: Reframing insulin as a positive part of your health care can help reduce this shame. Insulin allows you to live, thrive, and enjoy your life to the fullest.

You Are Not Defined by Numbers

Diabetes management often revolves around numbers—blood sugar readings, carb counts, insulin doses. But these numbers don’t tell the full story.

• More Than a Number: The amount of insulin you take is just a number. It doesn’t measure your character, your resilience, or your ability to manage your diabetes. It’s easy to get caught up in the numbers, but it’s crucial to remember that they don’t define who you are.
• Avoiding Self-Judgment: It’s natural to feel frustrated or even guilty if you feel like you’re taking more insulin than you “should.” But self-judgment only adds to the stress. Instead, focus on the fact that you’re doing what you need to do to take care of your health.

Insulin Amount ≠ Your Effort or Willpower

• Managing Type 1 diabetes is incredibly demanding, but the amount of insulin you take isn’t a reflection of your success or how “in control” you are.
• Blood sugar fluctuations are affected by countless factors, many of which are outside your control. Taking more or less insulin to adapt to those fluctuations is a sign of strength and responsibility, not weakness.

Insulin Is Not the Enemy

In a world where diet culture often demonises carbs and insulin, it’s easy to develop a negative attitude toward insulin.

• Insulin Is Essential, Not Optional: Insulin isn’t something to be feared or avoided; it’s a necessary and life-saving treatment. Whether you need a little or a lot, insulin is what keeps your body functioning properly.
• Combatting Stigma: Unfortunately, there can be a stigma attached to needing “too much” insulin, perpetuated by misconceptions about diabetes. But needing more insulin doesn’t mean you’re doing something wrong. It simply means you’re taking care of your body’s needs.

Embrace Body Positivity and Self-Compassion

• Body Image: If body image concerns are influencing how you feel about insulin, remember that your body is doing its best to function under unique circumstances. Insulin supports your body in staying strong and healthy.
• Self-Compassion: Practice self-compassion by reminding yourself that your worth is not tied to your appearance, your numbers, or your insulin doses.

Focusing on Overall Health

Instead of fixating on insulin doses, shift your focus to your overall health and well-being.

• Holistic Health: Good diabetes management isn’t just about insulin doses. It’s about balancing blood sugar, staying active, eating a balanced diet, managing stress, and taking care of your mental health. Your insulin needs are just one piece of the puzzle.
• Listening to Your Body: Pay attention to how you feel, both physically and mentally. If you’re feeling good, energised, and healthy, that’s a more accurate measure of your diabetes management than how much insulin you’re using.

Building a Positive Relationship with Your Treatment

It’s important to cultivate a healthy, positive relationship with your diabetes treatment.

• Trusting Your Care Plan: Trust that your healthcare team has prescribed the insulin regimen that’s right for you. They’ve taken into account your unique needs and are working with you to manage your diabetes as effectively as possible.
• Acceptance and Self-Compassion: Accepting that you may need more or less insulin than others—and being compassionate with yourself about it—is a crucial step in reducing the emotional burden of diabetes. You’re doing the best you can, and that’s what matters most.

Connect with Support

• Support Groups: Join online or in-person communities of others living with Type 1 diabetes. You’ll often find shared experiences that reinforce the idea that insulin amounts are personal and variable, not a measure of worth.
• Professional Support: Seek support from healthcare providers who emphasise a holistic approach, focusing on mental and emotional health alongside physical care.

Celebrating Your Strength

Living with diabetes requires resilience, discipline, and self-care—all of which are far more important than any number on a vial or a syringe.

• Recognizing Your Effort: Every day, you make countless decisions to keep your blood sugar in check and manage your diabetes. Those decisions, and the effort you put into your health, are worth celebrating.
• Focusing on What You Can Control: While you can’t always control how much insulin your body needs, you can control your attitude and approach to managing your diabetes. Focusing on the positives and taking pride in your self-care can help you maintain a healthier perspective.

Conclusion

How much insulin you take in a day doesn’t define you. It’s just one aspect of managing Type 1 diabetes, and it’s one that varies from person to person and from day to day. You’re a whole, multifaceted person with strengths, talents, and so much to offer beyond this one aspect of your health. What truly matters is how you care for yourself, how you adapt to your body’s needs, and how you approach your diabetes with resilience and self-compassion. Embrace your journey, trust in your treatment, and remember that your worth is not measured by numbers, but by your strength, courage, and commitment to living well with diabetes.

Day patient treatment for an eating disorder (ED) while managing Type 1 diabetes

Starting day patient treatment for an eating disorder (ED) while managing Type 1 diabetes presents a unique set of both positives and challenges, as the two conditions are deeply intertwined. The goals of treatment are often to balance physical and mental health, improve eating patterns, and stabilise blood sugar levels.

Positives of Day Patient Treatment for ED with Type 1 Diabetes

1. Specialised, Integrated Care:

   • Day treatment programs tailored to both EDs and Type 1 diabetes provide holistic care. These programs often include a team of professionals, such as endocrinologists, dietitian, and mental health specialists, who understand the relationship between food, insulin, and emotions.
   • Individualised care plans focus on both the eating disorder and diabetes management, ensuring that blood sugar levels are consistently monitored and adjusted as needed.

2. Structured Meal Support:

   • The structured environment of day patient programs encourages regular meals and snacks, a critical aspect for both ED recovery and diabetes management.
   • These meals are often tailored to help restore a healthy relationship with food, reduce the anxiety around eating, and maintain stable blood sugar levels.

3. Emotional and Psychological Support:

   • Psychological support in these programs addresses the emotional connection between diabetes and disordered eating, especially the concept of diabulimia, where insulin is restricted to lose weight.
   • Patients have access to therapy, both group and individual, helping them deal with body image issues, fear of weight gain, and the impact of diabetes on daily life.

4. Peer Support and Community:

   • Being part of a day program allows individuals to connect with others facing similar challenges, reducing feelings of isolation. Peer support is crucial for understanding shared struggles and celebrating progress.

5. Focus on Long-Term Coping Skills:

   • The day patient approach typically focuses on teaching patients how to balance insulin use, carb counting, and maintaining healthy eating habits over the long term. Learning sustainable strategies for managing both the eating disorder and diabetes can lead to long-lasting health improvements.

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Challenges of Day Patient Treatment for ED with Type 1 Diabetes

1. Complexity of Managing Two Conditions:

   • Balancing the treatment of an eating disorder with Type 1 diabetes is highly complex. Both conditions involve careful monitoring of food intake, which can exacerbate anxiety about food, insulin, and blood sugar levels.
   • The emotional stress of managing diabetes can also trigger ED behaviours, leading to a cycle that is difficult to break.

2. Fear of Weight Gain:

   • Insulin use can lead to weight gain, which is a significant concern for many people with EDs, especially those with diabulimia. Adjusting insulin levels to manage blood glucose appropriately can be psychologically challenging for patients who associate insulin use with changes in body image.
   • The emotional conflict between needing insulin for diabetes and fear of its impact on weight can lead to resistance in treatment.

3. Blood Sugar Fluctuations:

   • During the early stages of recovery, the body is adjusting to new eating patterns, which can cause blood sugar fluctuations. High blood sugars (hyperglycemia) and low blood sugars (hypoglycemia) are common as the body adapts, and these can be frustrating or scary.
   • These fluctuations can sometimes reinforce unhealthy thoughts or habits (e.g., skipping insulin to avoid low blood sugar or restricting food to prevent highs).

4. Hyper-Focus on Food and Numbers:

   • Managing diabetes requires constant attention to food, carbohydrates, and insulin dosing. For individuals with EDs, this focus on food can sometimes perpetuate obsessive thoughts and behaviors, making recovery more difficult.
   • It’s a challenge to work on repairing one’s relationship with food while still needing to track every meal for diabetes management.

5. Physical Symptoms of Diabetes Complicating Treatment:

   • Untreated or poorly managed blood sugar levels can cause fatigue, irritability, mood swings, and other physical symptoms that can make it harder to engage in therapy or adhere to the treatment plan.
   • Dealing with both the physical complications of diabetes and the psychological aspects of an ED can feel overwhelming at times.

6. Fear of Judgment or Misunderstanding:

   • Patients with Type 1 diabetes may feel a sense of guilt or shame about their eating disorder, worrying that healthcare providers or peers won’t fully understand the pressures of living with both conditions. This fear can make it difficult to fully open up and engage in treatment.

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Key Strategies for Success

• Education on Diabetes and ED Overlap: A critical part of treatment is educating the patient about how their diabetes management impacts their eating disorder and vice versa. Understanding this connection can reduce fear and anxiety around food, insulin, and weight.

• Gradual Adjustment to Food Intake and Insulin: Treatment usually involves a gradual reintroduction of balanced meals and appropriate insulin use to avoid drastic blood sugar changes and reduce psychological distress.

• Regular Blood Sugar Monitoring: Frequent monitoring helps to identify patterns and manage fluctuations, providing immediate feedback that can be used to adjust treatment plans.

• Focus on Non-Weight-Related Goals: Instead of focusing on weight changes, the emphasis is placed on improved energy levels, stable blood sugars, mental health improvements, and overall quality of life.

• Long-Term Support: After the day program, ongoing therapy and support are essential to help maintain recovery and manage diabetes in a way that promotes mental and physical well-being.

Conclusion

While day patient treatment for eating disorders with Type 1 diabetes presents challenges, it offers significant benefits in terms of specialised care, emotional support, and structured meal plans. With a comprehensive and patient-centered approach, individuals can make strides in recovery, balancing their physical health with the psychological components of both conditions.

The Challenges of Being Treated for an Eating Disorder in an Acute Hospital: A Waiting Game for the Right Care

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.

The Intersection of NG Feeding and Hybrid Closed-Loop Insulin Treatment: Finding Balance in Managing Diabetes and Disordered Eating

Trigger Warning: This post discusses topics related to Nasogastric (NG) feeding and hybrid closed-loop insulin treatment for diabetes, including medical procedures and eating disorders. If these topics may be triggering for you, please proceed with caution.

This blog is by no means ment for medical purposes but its my own personal experience of using both a NG tube and a HCL system recently. 

I decided to write this blog to give people an insight into this subject as it is something that I have been going through recently. I wanted to let people know that using a NG tube and a hybrid closed-loop technology to control your Diabeties during eating disorder recovery can work and something we shouldn’t be afraid to try more widely within the NHS. 

Living with Type 1 diabetes is a constant balancing act, and when you add in complications like disordered eating, the challenge can feel insurmountable. Recently, I’ve been thinking a lot about the ways that medical advancements in diabetes management—like hybrid closed-loop insulin systems—are intersecting with more traditional, life-saving measures like Nasogastric (NG) feeding. It’s a complex combination, but for some, it’s the best way to manage both life-threatening physical conditions and the mental health struggles that come with them.

Nasogastric (NG) feeding involves placing a thin tube through the nose, down the oesophagus, and into the stomach to deliver nutrition directly. It’s a method often used when a person is unable or unwilling to consume adequate calories through regular eating. While NG feeding is usually thought of in the context of severe eating disorders like anorexia nervosa, it’s also used for those with conditions that impact the digestive process or require precise nutritional control—such as in cases where diabetes and eating disorders collide.

NG feeding can be both a lifesaver and a lifeline. It allows the body to receive essential nutrients that might otherwise be missed due to restrictive eating behaviors, malabsorption, or other issues that complicate dietary intake. For many people, NG feeding is the first step in stabilising their health when they’re at a critical low point. However, it’s not without its challenges—both physically and emotionally.

A hybrid closed-loop insulin delivery system, combines continuous glucose monitoring (CGM) with an insulin pump that automatically adjusts insulin delivery based on real-time glucose readings. The goal of this technology is to keep blood sugar levels as stable as possible, reducing the rollercoaster highs and lows that come with manual insulin dosing.

These systems are considered "hybrid" because while they automatically adjust basal insulin levels, they still require user input for bolus doses at mealtimes. For someone managing Type 1 diabetes, this can be life-changing. It reduces the cognitive load of constantly calculating insulin needs and offers more freedom and flexibility in day-to-day life.

Combining NG feeding with a hybrid closed-loop system adds a layer of complexity that many within the healthcare system are still navigating. NG feeding delivers a continuous stream of nutrition, which means glucose levels can rise more steadily and predictably than they might with traditional meals. This requires careful adjustment of the hybrid closed-loop settings to prevent hyperglycemia (high blood sugar) or hypoglycemia (low blood sugar).

Here’s where things get tricky: Hybrid closed-loop systems excel at responding to fluctuations in blood sugar levels, but they’re not foolproof. With NG feeding, insulin needs might not fit the standard patterns that the algorithm was designed to handle. Therefore, those using both NG feeding and a closed-loop system often need to work closely with their healthcare team to fine-tune the system's settings for this unique scenario.

While hybrid closed-loop systems and NG feeding both have incredible potential to stabilise physical health, they also come with psychological and emotional hurdles. People who require NG feeding often experience intense feelings of loss of control, shame, or even failure. There’s a stigma attached to needing artificial feeding, which can feel like a step backward in one’s journey to recovery.

For those with disordered eating behaviors, this can be particularly distressing. NG feeding can trigger feelings of guilt or fear around food and nutrition, and using a hybrid closed-loop system on top of that can feel like you’re being micromanaged by technology. The emotional burden of watching your blood sugar levels on a screen and knowing that a machine is deciding your insulin doses can be overwhelming, especially when you’re already fighting the urge to restrict or control your food intake.

Navigating these treatments requires a multidisciplinary approach that includes endocrinologists, dieticians, mental health professionals, and diabetes specialists. Communication and compassion from the healthcare team is crucial. They need to recognise not just the medical necessity of these interventions but also the emotional weight they carry for the patient.

Language is critical. Healthcare professionals must take care to use language that empowers rather than diminishes the person receiving treatment. They should emphasise that NG feeding and hybrid closed-loop systems are tools to help regain control of one's health, not symbols of failure. Acknowledging the courage it takes to pursue these treatments can help patients feel validated and supported.

One of the biggest fears for anyone managing diabetes with a hybrid closed-loop system is losing touch with their body’s cues and signals. There’s a fear that relying on technology might take away the intuitive understanding of what their body needs. This fear can be heightened for those also dealing with disordered eating, as the concept of "trusting your body" feels both essential and impossible.

The truth is, technology and NG feeding can coexist with self-awareness. These tools are not meant to replace intuition but to support it during times when your body is in crisis and needs extra help. They create a safety net, allowing you to focus on healing without the constant worry of survival.

The combination of NG feeding and hybrid closed-loop insulin therapy is not a one-size-fits-all solution. It requires constant adjustments, not just to the equipment but to the expectations, emotions, and mindset of the individual receiving treatment. As technology advances, there is hope that hybrid closed-loop systems will become more adaptable and more seamlessly integrated with various forms of nutritional support, including NG feeding.

But the human element—understanding, empathy, and personalised care—will always be a crucial part of the equation. We must continue to advocate for research, funding, and training to ensure that those who are most vulnerable receive not just the best medical care but also the compassionate support they deserve.

In the end, it’s about finding balance. Balance between the technology that sustains us, the medical interventions that save us, and the inner strength that drives us to keep fighting. No one should have to face this journey alone, and no one should be left feeling like their life is anything less than worth fighting for.

The Heartbreak of Being Told You Don’t Matter: A Reflection on the State of Type One Diabeties & Eating Disorder Care

Trigger Warning: This blog contains discussions around eating disorder behaviours, mental health, and language used by healthcare professionals. These are my personal experiences and reflections. This post is not intended as an attack on any individual or organisation but as an expression of the deep frustration and helplessness that I—and many others—feel.

I’ve struggled with how to begin this post, not because I didn’t have anything to say, but because this topic is deeply personal. It’s one of those things you don’t want to talk about—but not talking about it makes everything worse. So, here I am, diving into a conversation that desperately needs to be had.

Recently, people in the Type 1 Diabetes (T1D) community have been receiving devastating news: many are being discharged from T1DE (Type 1 Diabetes with Disordered Eating) services due to a lack of funding, and in some cases, the services are closing altogether. This is a shocking and harsh reminder that healthcare is too often dictated by budgets and bottom lines rather than the needs of the people it’s supposed to serve.

I’ve also heard stories of others being denied access to treatment because they don’t meet the rigid criteria for what a T1DE diagnosis entails. For many, insulin omission is just a small part of their eating disorder, not the whole picture. Yet T1DE services often can’t support those whose symptoms go beyond insulin omission. Meanwhile, traditional eating disorder services tend to turn away patients who are in a “normal” weight range due to limited resources and strict guidelines.

So, what happens to those who fall between the cracks? They stay there. Passed from one service to another like a problem no one wants to deal with. They’re told they’re not “ill enough” or don’t need help “just yet,” because their behaviors don’t fit the available treatments. These people are left in no man’s land, stuck in their illness far longer than necessary—and in some cases, they never find their way out.

I’m not naive. I understand that the NHS is stretched thin and that difficult decisions have to be made. Red tape is everywhere, and career advancement often means more than patient care. But the fact remains: people are dying from eating disorders complicated by Type 1 diabetes, and this shouldn’t be happening in 2024.

I consider myself fortunate to have access to both a T1DE team and an Eating Disorder Service, but this came at a tremendous personal cost. I had to lose a significant amount of weight to be deemed “sick enough” for treatment from my local Eating Disorder team. Now, on top of my T1DE diagnosis (often referred to as diabulimia), I also have a diagnosis of anorexia and am on the verge of being admitted to an Eating Disorder Unit.

In the T1D and eating disorder community, there’s often this unspoken assumption that the responsibility for recovery falls entirely on the patient. You’re expected to be ready, to trust the healthcare professionals (HCPs) who make you feel like your very existence is wrong. We’re told to “go with our gut,” to trust our instincts. But what happens when the very instincts we’re being told to ignore are the ones we’ve relied on for survival? What do you do when you’re told that everything you thought was healthy is actually killing you, one step at a time?

Since 2020, when my T1DE began to rear its ugly head during the COVID pandemic, I’ve been fighting for adequate treatment—not just for myself but for others who struggle with this awful complication of diabetes. I’ve been told that to be a “good diabetic,” food is something that must be policed, not enjoyed, and that it’s better to be underweight than overweight.

I want to send a message to all healthcare professionals, whether you work in diabetes or not: your language matters, every single day of the year. Whether it’s a check-up with a GP, an appointment with a dentist, or a follow-up with a Diabetes Specialist Nurse (DSN), the words you use can have an impact far greater than you realise.

We’re all aware that resources are scarce and research is underfunded, but what about the people who are left feeling hopeless? The ones convinced that the only way out of the hell they’re living in is an early death—or worse, taking their own life? This isn’t okay. No one should ever feel that suicide is the only option. Yet, for many battling T1DE, that’s the grim reality.

At a recent parliamentary inquiry supported by Breakthrough T1D UK (JDRF) into T1DE, I had the honor of meeting the parents of Megan Davison. Megan took her own life after struggling with T1DE, and it wasn’t until a second inquest—one her parents fought tirelessly for—that T1DE was acknowledged as a major factor in her death. Sadly, Megan’s story is not unique. People have been dying from T1DE-related complications for years, across the world. So why are we pulling funding for treatments that could save lives? It’s like stopping funding for cancer treatments.

Sitting in that room, listening to others share their stories—of being refused care, told they weren’t “sick enough,” or battered from fighting for treatment—I realized something: T1DE is like an infection that spreads, consuming every part of your life. You’re lost in the chaos, with no one reaching out a hand to help. The six people who shared their stories that day are warriors. They survived, despite the odds. But what about the hundreds—thousands—who don’t?

There’s an uncomfortable truth that many of us feel but rarely say aloud: to the system, we cost too much money. I recently read a quote from a diabetes consultant: “Those of us who battle T1DE cost the NHS too much money through DKA admissions, complications, and the sheer time it takes to treat us. It feels like, in the eyes of the system, our lives just aren’t worth the expense.” As harsh as this sounds, this is how thousands of people feel every single day.

But we do matter. Every life matters. And it’s time we start demanding better. It’s time we stop accepting funding cuts and budget constraints as valid reasons to let people die. It’s time we start valuing the lives of those with T1DE just as much as anyone else’s. Because at the end of the day, every single one of us deserves the chance to live, to hope to be heard, and to recover.