What about if i am not 'Sick' enough? Facing the reality of an Eating Disorder Assessment Again

Facing the reality of any eating disorder treatment is daunting. Living with an eating disorder can feel like being trapped in a prison of your own making, with no visible way out. The bars of this prison are built from a complex mix of psychological, emotional, and physical factors, all of which conspire to create a sense of entrapment and hopelessness. The thought of undergoing an assessment can be particularly terrifying, fraught with fear, uncertainty, and the stigma associated with having an eating disorders. This blog post explores my emotional turmoil of preparing for my third Eating Disorder Assessment, the reasons behind my personal fear, and how i am finding a way to confront it.

An eating disorder doesn't appear overnight. It often develops over time, with seemingly innocuous thoughts and behaviours gradually forming the walls of the prison. The mental aspect of an eating disorder is perhaps the most confining. Thoughts become consumed by food, body image, and self-worth. The constant internal dialogue is relentless, criticising every bite, every glance in the mirror, and every perceived imperfection. This mental chatter can be so overwhelming that it drowns out any rational thought, reinforcing the prison's walls.

Emotions play a significant role in reinforcing the eating disorder. Feelings of inadequacy, shame, and guilt become intertwined with eating habits and body image. The disorder often serves as a misguided coping mechanism for dealing with deeper emotional pain. Every time these emotions are triggered, the chains tighten, making it even harder to break free.

Physically, the eating disorder takes a toll on the body, leading to a range of health issues that can feel like shackles. Nutritional deficiencies, gastrointestinal problems, and other medical complications can make it seem impossible to envision a life outside the disorder. The physical consequences serve as constant reminders of the prison, making escape seem ever more daunting. The physical toll of Type 1 disordered eating is immense. Chronic high blood sugar levels can lead to complications such as neuropathy, retinopathy, kidney damage, and cardiovascular disease. The body becomes a battleground, caught between the need for proper diabetes management and the destructive impulses of the eating disorder. For me I worried that the intricacies of managing diabetes such as how would they balance the need for strict glucose control with the psychological aspects of my eating disorder? This uncertainty made the prospect of an assessment even more intimidating.

When I first got a referral to my local Eating Disorder Service, the idea of an assessment loomed large in my mind. I was filled with questions: What would they ask? Would they judge me? Would they understand my struggles, especially since I also live with Type 1 diabetes? These unknowns fed into my anxiety, making the prospect of an assessment feel like an insurmountable hurdle. My first assessment occurred during the Covid-19 Pandemic, the country was in lock down and the NHS was overwhelmed trying to deal with this nightmare sweeping across the country.  

One of the biggest fears was the potential for judgment. Eating disorders carry a lot of stigma, and I worried that healthcare professionals might see my struggles as a personal failure rather than a complex mental health issue. This fear was compounded by my experiences with diabetes, where I had sometimes felt judged for my weight and my ability to manage my condition. I dreaded that an eating disorder assessment might bring more of the same. Facing an eating disorder means confronting deeply ingrained behaviors and thought patterns. The assessment process felt like a spotlight shining on my most vulnerable parts, forcing me to acknowledge and articulate the ways in which my eating disorder had taken hold of my life. The idea of laying bare my struggles in front of a stranger was enough to make me want to turn back and avoid the process altogether.

I wish i could say that my first interaction with the Eating Disorder service was a positive one but unfortunately it was not. After a difficult 1.5 hour teams assessment where a psychiatrist, asked me questions, but did not really listen to my answers, told me that my main risk factor was the fact i had Type 1 diabeties rather than how my Eating Disorder was affecting my mental health and finally that there was no real resources to support me i hung up and began to wonder why the hell did i put myself through all of that for nothing. It was safe to say i made the decision there and then to withdraw from all services including my diabetic team as i felt there was no one who was going to help me. No one who had any idea what this hell felt like and no one who had the time to help me. 

The admissions to hospital in DKA continued to come, as well as the decline in my mental health. I was done, i could not see a way out, i wanted to die, i had made the decision that to die was better than to live like this anymore. It had become my sole aim. I continued to not take my insulin, watching my blood sugars climb higher and higher day after day, and engage in my other eating disorder behaviours such as restriction of food, binging and purging, laxative abuse and over exercising.  

In 2022 i was facing a second Eating Disorder Assessment with a different NHS trust after moving house to the Kent Coast. This time the assessment was reasonably short about 30 min phone call, the gentleman on the end of the phone was kind but unsure how to help. He told me he would discuss me at a MDT meeting and get back to me. Within a week i had a physical assessment at the local ED hub, which included bloods and a chat over the phone with a ED nurse. I was again in DKA and they wanted me to go to hospital which i refused, i gave myself a few units of insulin and kept moving forward. I then had a more in depth assessment 2 weeks later with a ED nurse and a dietition that had some knowledge of diabeties. The assessment was 2 hours long and included medical monitoring and loads of questions. I did not liked to be weighted so i refused this issue started to drive a wedge between myself and the service. After about 2 months it was decided that this ED service was not going to offer any help either. I was told it was because i was "to complex" and that i wouldn't adhere to being weighed. To me the most important aspect was trying to keep me out of hospital not a number on a set of scales.   

My last hospital admission in DKA came in November 2022. At this time i had had no real amount of insulin since March 2020. I was due to fly to New Zealand in December on a trip we had been waiting for since 2020 and nothing was going to stop me getting on that plane. As i sat in the hospital bed with my wife holding my hand i decided that although being thin was my ultimate goal i did not want to be unwell on the other side of the world and that maybe taking a few units of insulin a day was not so bad. I mean it was no where near perfect but i knew something had to change. 

I have to say at this point this is no way my whole story but we dont have forever and im sure you are getting bored by now.  So how did we get to the point that i am now about to embark on the third Eating Disorder Assessment with yet again a different NHS trust. Believe me its not really something that i want to do however i have found my self in a place where one eating disorder behaviour have been over taken by another and what was an obviously way to destroy my body (insulin omission) has turned into one of insulin omission through the back door as someone said to me recently by basically not eating so not having to take insulin. 

So what have i learnt from my last two eating disorder assessments that i am hoping will help me embrace this one and move forward in my recovery. 

The first step is to acknowledge and accept my fear. I am allowing myself to feel anxious and scared, recognising that these emotions are a natural response to a very real challenge. I have told my health care team my fears and the reason for them, some have been respectful, some not so much but hey at least i have done the right thing and admitted it. 

Secondly i am educating myself. Knowledge is power. I have been spending time researching what a proper eating disorder assessment typically involves. Understanding the process more. Knowing what i should expect helps me to feel more prepared and less vulnerable. 

I have reached out to people I trust and have shared my fears with them. Talking to friends, family, has provided a sense of support. It has helped me feel less alone and more understood.

I still have many question, mainly what about if they think i am not sick enough to warrant help? However at the moment i am trying to focus on the bigger picture reminding myself of why my health care team have been seeking an assessment in the first place: to reclaim my health and my life. 

Being terrified of an eating disorder assessment is a common and understandable fear. The process can feel overwhelming, especially when compounded by the complexities of managing a condition like Type 1 diabetes. However, by acknowledging my fears, educating myself, seeking support, and focusing on my long-term health, i am hoping to find the strength to move forward. Remember, seeking help is a brave and important step towards reclaiming your life and well-being.