One of the major issue in receiving treatment is the pervasive misinformation and stigma that surrounds these conditions. Eating disorders are often dismissed as lifestyle choices or superficial problems, rather than recognised as serious illnesses. This stigma is not only prevalent in society but is alarmingly common within the medical community itself.
Another glaring problems is the reliance on Body Mass Index (BMI) and other arbitrary metrics to determine eligibility for treatment. This gatekeeping mechanism not only undermines the complexities of eating disorders but also leaves countless individuals like me without the help they desperately need. BMI, is a simplistic and flawed metric when it comes to assessing mental health conditions. Eating disorders are not defined by weight alone; they encompass a wide range of behaviours, thoughts, and physical symptoms that can affect individuals of any size.
During my journey seeking help, I have been repeatedly told that my BMI does not fall within the “critical” range, and thus I was not “sick enough” to receive treatment. I have even started to believe that i am not worthy of care that i do not matter. The reliance on arbitrary metrics leads to the invisibility of those who do not fit the stereotypical image of an eating disorder patient. Despite experiencing severe psychological distress and engaging in harmful behaviours, I am often dismissed because my weight is not low enough. This lack of recognition exacerbated my feelings of isolation and hopelessness, reinforcing the dangerous belief that I needed to be thinner or go back to insulin omission to be taken seriously. This is something i consider on a daily basis.
It is well known that people who suffer with Eating Disorders move between behaviours, some might start with restriction of food, along with laxative abuse or obsessive exercising. People who experience T1DE may when they start recovery switch behaviours from insulin omission to food restriction, binging and purging behaviour, over exercising or all the above plus many more. But like i am finding there is no where for us to go to be treated as we no longer fit within the 'traditional' definitions used by many specialised centres of suffering from T1DE and we dont meet the criteria for many Eating Disorder Units cause our weight is not classed as 'critical'. So what happens to the many of us who fall between the gaps?
The answer from my experience is we just have to keep agreeing to be told we are not sick enough NO matter the personal cost. In the last 18 months i have been flirting with the line of Eating Disorder Recovery and recently have been asked to consider another Eating Disorder referral due to my drop in weight. This will be my third in the last few years. In conversations with HCPs the word ‘Just’ comes up a lot it’s ‘Just’ an assessment it’s ‘Just’ numbers it’s ‘Just’ a blood test. Let me be quite clear it’s not 'JUST' anything. It’s letting a new group of people into my deepest darkest secrets, it’s being judged by numbers on a set of scales, it’s talking to people who have no understand what it is like to live my life everyday. It’s having someone else decided if I deserve care or not based on an archaic theory that tells you nothing about someone’s health. Its hard and most of all it is scary.
I have turned it down before and i am still undecided what to do this time, this is mainly to protect what is remaining of my mental health cause lets be honest as my Hba1c is back down to normal and i am not underweight it is highly unlikely that an Eating Disorder Service will agree to offer me any support at all and i refuse to go through the trauma cause thats exactly what it is, the trauma all over again to be told 'your suffering is not enough'.
One of the most damaging consequences is the delay in receiving care is that eating disorders are progressive conditions that worsen over time. Early intervention is crucial for effective recovery, but the gatekeeping often means that individuals must reach a critical point before they are deemed worthy of help. This “wait until you’re worse” approach is not only illogical but also life-threatening. It even causes relapses, and the feeling that you do not deserve care. The extended period of untreated illness makes the fight for recovery more difficult and you are left feeling whats the point.
There are broader issue within the NHS and a lack of understanding and appreciation for the complexities of eating disorders. There is NICE guidance that is worded on the criteria of Eating Disorder Treatment not being weight or BMI focused, however many of us know in reality the rationing and lack of funding has caused Eating Disorder services to use BMI as the sole indicator to dictate who receives care. Leaving many of us in bigger bodies feeling left to suffer with no where to turn.
Another issue is we do not have a comprehensive diagnosis for T1DE, we need a diagnosis that covers all Eating Disorder behaviours not just this focus and fascination on insulin omission. While insulin omission is of course serious and can make you seriously ill very quickly, it is not and should not be the only focus when someone cries out for help. We need a more wider diagnostic criteria. We need leaders to come to the table and be prepared to listen and understand that when people move into T1DE recovery whether they take there insulin should not be the main consideration anymore. Questions should reach broader subjects such as behaviours, Mental Health struggles and whether your quality of life is being impacted. This will help to distill that you are more important than the numbers on the scales, your suffering is noticed and validated that you as a whole person matters. It’s time to dismantle the barriers and build a system that recognises and responds to the complexities of eating disorders within each individual in all their forms not just a number on a scale.
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