Recovery Stories: The dangers of diabulimia

In this podcast Tabitha talks to a person in recovery about her struggles with diabulimia.

link to the BBC diabulimia documentary mentioned:

youtu.be/tSLjM6cZaTo

The Eating Disorder Recovery Podcast

Recovery Stories: The Dangers of Diabulimia

Tabitha: Hello there, welcome to this weeks podcast. This week I'm going to be talking to somebody who would like to remain anonymous. We are talking about her experience with diabulimia. Diabulimia is a type of eating disorder, that happens when a person has type one diabetes and then they start to use eating disorder behaviours or insulin control to control their weight. We start this conversation by my anonymous friend telling us a little bit about herself.

Anon: I was diagnosed as type 1 diabetic when I was 9. A week before my 10th birthday. Then due to some treatment I received for the eating disorder when I was 12, I had quite a few other medical tests and things done because my diabetic control was so good because the lack of food, I didn't need a lot of insulin, I wasn't having very low or very high blood sugar levels and as a result of those tests they found out I had actually had quite an unusual form of diabetes called MODY which is, I think it's categorised more akin to type 2 diabetes but it's treated in the same way as type 1 and it's quite unusual.

So for all intents and purposes I'm treated in the same way as a type 1 diabetic and I guess my eating disorder history is that I developed plain vanilla classic anorexia when I was 12 and then the anorexia really spiralled when I was going on 13 at which point in about 6 months I'd lost about a third of my body weight and I was towards the lower end of the healthy BMI scale as it was. I became very very unwell and was on the verge of being sectioned by CAMS, the Child and Adolescent Mental Health Service in the UK. I remember sitting in my bed at home on the evening after my parents had taken me home from the outpatient hospital and brought me this bowl of cereal, bran flakes or something, but they brought me this bowl of cereal and they said, my mum was there saying you have to eat this you have to eat this. I don't know what it was but I was so distressed and so upset that I just ate it.

And that started a three month period of what you refer to as feast eating. So I ate and I ate and I ate for 3 months and I ate no diabetic friendly foods at all. All cakes and chocolate and all of the things I'd been restricting and one of the things that the medical team had tried to get me to drink when I was underweight and I'd feigned drinking and poured away and done all the usual anorexic guise getting out of eating were these things called Scandishakes. They are basically like these meal replacement shakes. But they are actually really nice ones in terms of they are just full of sugar basically. So they just taste like McDonald's milkshakes so they are really quite enjoyable but when I started having those initially my blood sugar just went absolutely off the scale because I hadn't been having them before and so the medical team just assumed well those are fine for people with diabetes. But when I actually started drinking them, the sugars went off the scale and I didn't put on any weight. So I was eating a huge volume of food, a lot of calories, really a lot of food and I wasn't putting on an ounce. And at one point I was actually losing weight despite being extremely underweight.

I suppose that was the first experience I'd have of what's referred to as Diabulimia which for any listeners who aren't aware, Diabulimia refers to when predominantly type 1 diabetic patients do not take insulin which is something they need to take to break down carbohydrates and sugars. They don't take their insulin because they know if they don't take it they can eat whatever they like, which if they are restricting is probably high fat, high carb, high sugar food and not put on any weight at all and in some cases lose weight. So that was my experience, it was completely in inadvertent at first and at that point I assumed that my brain was being nourished to some extent because I didn't put 2 and 2 together and think this is nice, I'm going to carry on doing this.

I took the insulin, I got things under control again and it was all a bit up and down anyway because of the types of foods I was having to eat at that point to get to weight restoration. But when my BMI reached I think it was 18 the medical profession thought she's out of the woods, she's clearly put on this weight, she's fine and at that point, my parents were scared by the amount that I was eating as well because they didn't understand what was going on, they didn't think I had an eating disorder at that point. So they were very much OK great, so you can stop all of the eating now, you don't have to eat so much food, you can just go back to normal, eating normal foods and normal potions and go back to caring your diabetes and what's healthy for that.

Because at that point I was in no way mentally recovered, nowhere close, I hadn't received any psychological support at that point because I was hell bent on not getting any mental help at that point and my parents, because I'd assured them being in the eating disorder mindset, I'm fine, I've got this under control they didn't compel me to go and get treatment and to be quite honest with you the only treatment that was offered to me was an inpatient facility that was 100s of miles away, I think it was in Scotland. It was 100s of miles away from them anyway and that was the last thing they wanted. They were really so concerned for me to then be whisked off away to the other side of the country wasn't something that they were keen to do at all.

So I reassured them and I was going back to this regular quote pattern of eating with what I now realise was very much quasi recover and then I suppose at that point it was a conscious effort to pursue, for a lack of a better word, the diabulimia. So I would be craving all the high sugar, I don't like the term junk food, but processed foods and I'd be craving them and I didn't feel able to give myself permission to have those foods and take my insulin at the same time. It went in dribs and drabs.

I did that for a couple of years and then after that time I just worked out that it felt so rubbish to abuse the diabetes in that way because I don't know what the experience is like for anyone with an eating disorder particularly anorexia without diabetes because that hasn't been my experience because it set in at 9 and I developed the eating disorder at 12 so I only ever had an eating disorder with the diabetes but I can not convey how weak and tired and how horrendous it feels to have low blood sugars and then how tired and just faint and unwell I felt when my blood sugars were high as well. When the blood sugars were low and I was very much in the anorexia stage there was this immense fear of having to eat in order to bring the blood sugars up again because I was taking next to no insulin but there was this huge fear of if my blood sugars go to low and I could go into the coma I'm going to have to eat something that wasn't planned for.

Looking back on at, that is hugely scary because I would, and I think as well that the issue I had was that I was getting a lot of positive reinforcement from my diabetic team until my weight became a concern I was getting a lot of positive reinforcement because my blood sugar control was exemplary because I wasn't eating, I was having next to no insulin and my blood sugar control was excellent and so from their prospective I was the model diabetic patient which definitely plays into my plain vanilla anorexia type personality or susceptibility. Because I'm very type a, perfectionist want to please people. From a purely physical perspective if I don't eat my blood sugars go extremely low because I have to take a certain amount of insulin my body doesn't produce that and so I need …