Statistics suggest that 25% of all T1Ds have had incidences of diabulimia, 40% of females and 10% of males.
Diabulimia is the deliberate act of avoiding, reducing or omitting insulin injections with a specific intention to lose or control weight. The mechanism for diabulimia is that failure to take sufficient insulin prevents the efficient absorption of food nutrients. This is the same mechanism that means that many people suffer from severe weight loss prior to diagnosis.
- Insulin delivers glucose to the muscles where it is used. Any surplus not used is converted to fat stores. Hence, weight gain.
- The insufficient amount of insulin (pre diagnosis or diabulimia) results in the muscles receiving no energy, therefore, they will convert the fat previously stored into energy.
- However, the conversion process releases creates a chemical reaction as it does so and releases large amounts of ketones into your blood. This places you at serious risk of the short term health complication, DKA
- Furthermore, the insufficient insulin also results in the glucose remaining in the blood and increases blood sugar levels and Hba1c. This puts you at significantly increased risk of all the long term complications.
I believe that diabulimia can be separated into two sub categories.
Outcome based diabulimia
In many cases, it is outcome based and short term. For me, it was a sporting outcome, for others, it is “to fit in that dress for that wedding”.
I would hypothesise that the vast majority of the 25% fall into this category.
In my case, it was not compulsive, it was not even subconscious. I was choosing to do it. I turned it on and off like a switch as and when needed. It is my belief that this is not uncommon behaviour.
Compulsion based diabulimia
For many, diabetic or non diabetic, what starts out as an outcome based activity, becomes a compulsion and a habitual behaviour, and often related to a body image disorder, for example, body dysmorphia. It is at this point it becomes like a stereotypical perception of an eating disorder, requiring serious medical intervention.
Diabulimia was described in a recent BBC documentary as: The most dangerous eating disorder, you’ve never heard of.
Why does diabulimia affect so many T1Ds?
As with depression, the amount of us that succumb to diabulimia is no surprise to me, it is not a weakness, it is completely to be expected! Refusing to succumb to it shows massive mental strength, but the opposite is not true. Consider the following analogy:
The Magic Pill
Dietting and weight control is a massive commercial industry that we are all subjected to. I have massive issues with the body image debate and the media portrayal of what is healthy, but that is a debate for another day. However, very few people find weight loss, easy!
I want you to imagine what would happen if the following weight loss product was introduced on to the market place for use by all:
Introducing the new magic pill.
- Take this pill every day with meals and the weight will just drop off!
- There is no need to reduce your eating (in fact, it works better, if you increase your food intake!)
- No additional need to exercise
- It really is that easy!
But here is the small print:
- Possible long term side effects include
- Blindness
- Heart failure
- Kidney failure
- Circulation problems
- Amputations
- Possible Short term side effects may include
- Death
But, who ever reads the small print on anything?
I challenge you, the next time you are with a group of non diabetic friends, discuss this, ask them if they would take this magic pill? How many do you think would say yes? How many would say no? How many would be lying and actually would take it.
As a T1D, we are biologically unfortunate, that this magic pill is available to us, simply by omitting insulin. We either ignore the small print or are not made aware of it!
My hypothesis is that, of your friend survey, it would be a large percentage maybe 40% of females, 10% of males? The exact same ratios of T1Ds that do actually succumb to it
How can we reduce this percentage?
Social Media
There are many diabetic community groups in which any conversation on diabulimia and eating disorders is deleted. Part of the reason is fear of triggering, which will be explained next, another part of the reason is the monosyllabic nature of social media communication. Many people try to summarise their feelings or opinion in as few words (or symbols) as possible.
A discussion on diabetic eating disorders deserves a full explanation as you are getting here. But a common conversation I see is as follows:
Q: Does insulin make you fat?
A: Yes its a growth hormone.
Although the answer is factually true but it does no justice to the full details. I will be answering this exact question in a later post and I guarantee my answer will be longer than 5 words long.
Triggering
As mentioned above, diabulimia is a bit like “Fight Club”.
The first rule of diabulimia is: You do not talk about diabulimia
The second rule of diabulimia: You DO NOT talk about diabulimia
We, as a community, also, do not talk about diabulimia enough, because we fear that if people are made aware of their biological magic pill, they will utilise it, but if they don’t know about it, they won’t.
For that reason, I believe the majority of diabulimia occurs by osmosis, mine did, I had one year when my control was particularly awful and i lost weight and consequently performed well in my fitness test. Because I perceived a favourable experience, I repeated it in subsequent years.
The big paradox is though:
The reason we don’t talk about it, is because we don’t want people to be tempted to try it!
BUT
The reason I tried it was because it was never talked about!
My mantra is to tell you the truth, the whole truth and nothing but the truth, there should be no taboos. Knowledge empowers avoidance. If it does become a behaviour, knowledge will allow you to identify it early and ask for help. Abusing your insulin for short term gain, may seem like a good idea but the dangers far, far, far, far, far outweigh any outcome. Never ignore the small print.