In this podcast Tabitha talks to a person in recovery about her struggles with diabulimia.
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 take long acting and short acting insulin several times a day.
If my blood sugars go too low, I become shaky, faint can not function when I’ve had they are called hypos, or hypoglycaemia which I know that a lot of people with anorexia deal with anyway, but I think with diabetic people it is just amplified because alongside the anorexia they are also dealing with this chronic health condition and so extremely weak, to the extent that if I was trying to get food when I had a very low blood sugar I would have to hold on to the work surfaces and things in order to not fall over, just to get some food. I actually am very fortunate in that I feel unwell whereas I know that for a lot of diabetic people sometimes they don’t and it’s just case of one minute they are walking around and then then next minute they are out cold on the floor.
From the other end of the spectrum when the blood sugars were high and I weren’t to take insulin then, I become extremely tired, extremely thirsty, unable to sleep through the night, because I will be drinking so much I needed to get up to use the bathroom. And I suppose the invisible signs if you like, that can’t be seen when the blood sugars are high, that’s when things like damage to the retina occur so blindness and because of the circulatory issues can lead to amputations in fingers and toes are quite common.
T: I didn’t know about the blindness.
A: Oh yes, that’s very common and diabetic people have to have retina screenings every year to check to photograph the retina to see if there are any signs of diabetic retinopathy. That is quite a common side effect of mismanaged diabetes, inadvertently. But obviously with diabulimia if someone is doing that in such an extreme level then that can be accelerated quite substantially so people that are quite young can lose their sight.
T: Did you know at the time that that was a risk?
A: Yes, I did and I can honestly say I didn’t think about it at the time. On a logical level, I knew what all the risks were because other risks like kidney damage, damage to organs are really serious and in some cases organ transplantation. But to me, because the anorexia was so strong, at that point none of it mattered. It was, I want to be thin and I don’t want to eat more than I’m eating now. And if I do eat then I can’t take insulin and that’s just the way it is.
T: I know that when I had active anorexia sometimes I think it’s part of that not knowing how sick you are or how risky things are but you can sort of know that something’s a risk and do it anyway. You feel that you’re special and it won’t happen to you.
A: Yeah sure and I think as well with me, I was pulled up on it by my medical team because I was so underweight but diabulimia can happen, like anorexia in someone at any shape, any size body. So someone doesn’t have to be massively underweight and because mismanagement of diabetes can happen quite innocently as it’s quite a difficult condition to manage. The management of it differs hugely between individuals so it can quite easily slip under the radar of medical professionals, unless someone actually comes out and asks for help which as you say, if someone is so hell bent on restricting then that may never happen.
T: So what helped you to understand that you couldn’t continue to do what you were doing?
A: Honestly I think the only thing that got me out of the diabulimia was kind of moving into Othorexia. Which is horrendous, but I got into this mindset of, I feel really bad when I eat all this junk food because I’m not taking my insulin so I equated that with, if I eat all this processed food it doesn’t matter if I take my insulin or not it’s definitely the food and so I can eat as much as I like provided it’s healthy.
And then that went down a whole other rabbit hole so the diabulimia became kind of irrelevant at that stage because I’d found this other way of restricting and so that wasn’t really required any more. It’s only when I looked back on it and I’d managed to get myself to a point enough physical recovery to think, I don’t want to do any of those things that I can see, there wasn’t any conscious effort on my part to think, oh I’m really scared of the potential of going blind, or losing my foot or something, there wasn’t nearly that rational, it was very much like, this is the way to go because look at all these people in Instagram or whatever that are eating clean and this is why I should be doing.
T: But many people do that, most of us cycle through every type of fad diet or stage and you do something maybe for a year or so and it gets tired and you look for something else that’s going to help you feel safe, but allow you to change what you’re doing. S it sounds likes that move to othorexia was a way that helped you feel safe but it enabled you to change to do something different which isn’t ideal either.
A: No, far from it.
T: OK, so anything else that you think is relevant on the Diabulimia?
A: Having a quick look at that documentary that I mentioned to you which is the BBC 3 Diabulimia, it’s called something like The Worlds Deadliest Eating Disorder, but they quoted a study which said that 60% of type 1 diabetic women have experienced an eating disorder by the time they are 25 so I think it’s extremely common and I also think it’s extremely difficult to not only diagnose but get help because I know people who are clinically very underweight, they should meet the threshold of inpatient treatment just as an eating disorder stand alone illness but nobody inpatient facility will take them because they are diabetic. They don’t have the diabetes knowledge and they don’t know how to adapt the standard meal plan that they give to everyone and everyone has to eat the same.
T: Right, so they say there is a risk that they can’t take on.
A: Yes, absolutely
T: So what do you think needs to happen in the treatment field in order to be able to serve what sounds like quite a high percentage of people with type 1 diabetes who also have an eating disorder or be using that to control their weight. So what do you think in your experience could have been offered and what do you think could have helped you maybe earlier on?
A: I think that the first step with anything is awareness because at the time that I was suffered with diabulimia it wasn’t a thing. It wasn’t recognised particularity and I think that a lot of women and men too. There haven’t been any stats on it but I’m sure men as well deal with the same issue and young boys as well.
Just to raise it as an issue and really monitor them closely in terms of every diabetic child, adolescent and adult even, should have regular diabetic appointments. Their average glucose level, their HBA1C level which is their average blood sugar taken over I think 3 or 6 months will show if they’ve had high blood sugar levels for that period so that will kind of give away if they’ve been abusing or taking their insulin or not.
Raising awareness among the diabetic consultants that this is a thing and then interdisciplinary discussions so have the diabetic dietitians work with the eating disorder dietitians and help people manage things in a way that isn’t obsessive because I know with me, asking me to count carbs was not helpful because saying you can have X number of carbohydrate portions a day for this insulin wasn’t helpful. So maybe just taking a more relaxed to it, saying you’re taking this amount of insulin at the moment and you did this amount of insulin with this meal, so how were your blood sugars after that? Oh OK so maybe you need a bit more insulin if it was high or OK maybe that was a bit too much insulin so maybe we need to dial it down a bit. Don’t go into this carb counting thing.
T: Yep don’t play into things that eating disorders really like to do. So I like what you said the interdisciplinary things there. It seems like it’s a no brainer that it should happen anyway if somebody has diabetes and they also have an eating disorder that people work together but I guess maybe it’s probably even harder in the US than it is in the UK because at least in the UK you have the NHS and I did find when I lived in the UK, things were more interwoven on the NHS because it;s one organisation trying to work together whereas in the USA it does feel more difficult that doctors don’t talk to each other and aren’t necessarily working in t he same organisation even.
A: I agree, I think as well each NHS trust in the UK will have a segregated area, each trust will have a diabetic dietitian and an eating disorder dietitian and so it should in theory be possible for them to liaise. But I don’t know why that doesn’t, I guess because it’s not picked up on.
T: Right, the importance isn’t understood is it? I guess a lot of people who maybe are diabetic specialists are not an eating disorder specialist, so it’s just not on their radar that people can use being a type 1 diabetic to control their weight. As much as it should be. To me it seems really obvious but my head is in eating disorder world, so it would do, I guess maybe if you were not in eating disorder world especially if you work in a health system that is obsessed with what they call the obesity crisis then maybe that is also a factor that plays into it.
A: Absolutely. I definitely agree with that, particularly with something like diabetes because what I’ve experienced a lot, just among the general population there is a lot of confusion between type 1 and type 2 diabetes. If you say your diabetic they just assume you are type 2 diabetic and they don’t really understand what type 1 diabetes is. I think what’s also tied up in diabetic dietitians in particular is this whole weigh management paradigm when they get a patient their objective is to get them to get their insulin levels under control primarily through dieting behaviours. It can be difficult when as you say, when people aren’t really acquainted with the eating disorder world as it were that they don’t understand why someone wouldn’t take their insulin if it makes them feel really bad.
T: Do you think there was anything anyone could have done or said that would have helped you out? Because I know that we may have family members listening to this and it’s a really tricky subject. Like you said you were pretty resistant to hep and support initially just wondering what your thoughts are if you can think back if anybody could have said something that might have helped you?
A: You have to reach a certain point of just being sick and tired of it and wanting help. I think if someone is in that frame of mind that they don’t feel like they can give themselves permission and just go ahead and in the early stages of recovery, eat all the food. Just giving someone the permission to do that because that’s all I wanted when I went to see dietitians. There’s nothing that they could have taught me about nutrition or about diabetes management that I didn’t know already. I was obsessed and so I think all I wanted was somebody to give me the permission and say you know what? If you want to eat 5 boxes of Krispy Kremes you can go for it and we will help you manage the insulin with that.
T: So a big thank you to my anonymous friend there. Some of you might be wondering how she’s actually doing so I asked her and she said in terms of where I am with my recovery, I have recovered fully from diabulimia and have been fully recovered for 10 years and I am in the later stages of recovery from both anorexia and othorexia. Mentally I feel as if I am very close to being fully recovered.
I also asked her if there was anything that she would say with somebody with type 1 diabetes who was also dealing with an eating disorder and she said the thing she would tell them would be to reach out for support. Please tell someone, family, a friend and eating disorder therapist or anyone on the diabetes treatment team preferably someone who ascribes to a HAES model. Taking that first step asking for help can be terrifying but you reach out and the amount of support and love you could be shown would surpass any expectation you have.
Diabulimia is a lethal illness and addition to all the long term complications of an eating disorder it has all of the long term side effects of poorly managed diabetes such as amputation, blindness and organ damage and failure. This is no joke and anyone struggling deserves a life so much better than they currently have, they are worthy of recovery. Never underestimate the courage and the strength you have just living with diabetes every day it’s a real achievement just living with it. A life doesn’t need to be made harder by introducing an eating disorder into the mix, not that an eating disorder is a choice. If they feel unable to give themselves permission to seek help, I am giving it to them now. Go and get help so that you can live a wonderful, free life. You so deserve it.
Thank you for listening to this weeks podcast, if you have a recovery story to share or if you have something you think you would like to hear covered in this podcast, please email me at firstname.lastname@example.org or you can tweet me it’s @love_fat_ Cheers and until next time cheerio.