Diabulimia: The World's Most Dangerous Eating Disorder

BBC Three

Diabulimia is where people with Type 1 diabetes deliberately give themselves less insulin than they need, for the purpose of weight loss.

Gemma, Nabeelah and Becky are some of thousands of people who suffer from Diabulimia. Usual eating disorder treatment does not work, but medical experts hope to change that.

00:02

There's an eating disorder more dangerous to its sufferers

00:06

than anorexia or bulimia.

00:08

It's an eating disorder with a chronic illness,

00:11

so you're trying to fight both on a daily basis,

00:14

and that's quite difficult to do.

00:17

Most people haven't heard of it.

00:19

I just never wanted to hurt my family.

00:22

Its name is diabulimia.

00:25

It is like the perfect diet gone wrong.

00:55

I have someone with me all the time because I'm under section and...

01:00

apparently I'm at risk to myself, I think.

01:04

I don't know, really.

01:06

I think that's why.

01:11

What way do you want to go - this way?

01:18

Like all Type 1 diabetics,

01:20

Gemma needs to constantly monitor her blood sugar levels and inject

01:23

herself with insulin several times a day in order to live.

01:44

I've got my test kit.

01:46

I have test strips and then...

01:49

..put it in.

01:51

Doesn't actually take long, but it's just more of a head...mind game.

01:55

And then...

01:58

..get the blood out...

02:01

..like that.

02:07

4.3. But I'm not allowed my insulin cos I'm not allowed

02:11

to inject it myself.

02:13

They're doing it.

02:25

It's addictive not to inject your insulin cos, I don't know,

02:28

you can just eat whatever you want

02:30

and lose weight. It's like...

02:34

..two birds and one stone, and all that.

02:40

Diabulimia is an umbrella term that consists of three main features.

02:44

The first is that it only occurs in people with Type 1 diabetes.

02:48

Secondly, that people with Type 1 diabetes have a fear

02:52

that insulin causes weight gain. And third,

02:55

that this fear is so strong that it leads them to omit the amount of

03:00

insulin they take in order to have weight loss.

03:05

If the person with Type 1 diabetes

03:08

does not take any insulin, they will die very quickly.

03:15

Diabulimia is extremely dangerous and, in some cases, fatal.

03:20

The lack of awareness in health care services means help for sufferers

03:25

in the UK is very scarce.

03:27

Psychiatrist Khalida Ismail runs

03:28

a diabetes and eating disorders clinic,

03:31

which aims to break new ground for this life-changing condition.

03:36

So would you like to just give me a bit of a summary

03:40

of where you are now?

03:43

You know, I'm quite a rational person.

03:46

I know I should be taking my insulin,

03:48

I know exactly what it does

03:50

and I know what will happen if I don't take it.

03:53

But then I've just got this other voice being like,

03:55

"It's much more important to be skinny."

03:58

Do you still want to just give two units per meal?

04:01

I... And try to get into a routine with that?

04:04

I think that would be sensible,

04:05

I don't really want to try and take any more, but maybe if I could take

04:10

two units with as many meals as possible.

04:14

You can look quite well and have a normal body size,

04:18

and yet, because you're restricting insulin inside you,

04:22

you're running very high blood sugars,

04:24

and these high blood sugars are increasing your risk

04:27

of getting diabetes complications,

04:28

such as damaging your eyes and going blind,

04:31

damaging your kidneys and needing a kidney transplant,

04:34

or damaging your nerve endings.

04:49

INDISTINCT CHATTER

04:57

Nabeelah lives at home with her extended family.

05:01

She's struggled with diabulimia for several years,

05:04

but has difficulty being honest with her parents about it.

05:07

All right, decent smiles, please.

05:10

OK, everybody, one, two... Everybody say...

05:13

HE TRILLS

05:15

Oh, my God!

05:16

Hey, smiley boy.

05:20

Well, today's Eid and we've got my whole family here.

05:23

For the past month, it's been Ramadan and everyone's been fasting.

05:26

But I've been exempt from it because of the diabetes,

05:28

so I don't have to fast.

05:30

But everyone else has been keeping...

05:33

They've been without food and water for about 20 hours or so every day.

05:49

When I'm injecting, my hand tends to shake, usually,

05:52

especially once I've got the EpiPen close to my skin.

06:00

Me being completely recovered would be me being able to inject

06:05

on a daily basis without the big cloud of depression

06:10

or the big cloud of weight gain standing over my head.

06:16

A reason why, in different cultures, it's not really spoken about is

06:22

because it's not admirable to have

06:25

a mental illness or an eating disorder.

06:28

And if it's not spoken about in families,

06:30

then it's kind of just ignored and blocked away,

06:34

like it's not there.

06:42

With my diabulimia,

06:44

you've got the added complications of what diabetes brings.

06:48

My eyesight has gotten worse,

06:50

I've been getting nerve pains in my feet and hands and fingers

06:54

cos that's where it tends to affect you the most.

06:57

I've also noticed, like, kidney pains in my lower back.

07:00

I get dizzy easily, I get migraines.

07:03

It's an eating disorder with a chronic illness,

07:06

so you're trying to fight both on a daily basis

07:09

and that's quite difficult to do.

07:43

So the reason I walk with crutches at the moment is

07:46

because of the damage that I've done to my feet,

07:49

but that's all due to not taking care of my insulin

07:53

and my diabetic control.

07:56

The surgeon at the time was like,

07:57

"Yeah, your bone is actually like honeycomb and mush."

08:00

It's kind of dissolving it, it's, like, disintegrating.

08:04

So that's kind of...

08:08

..hard to think

08:10

that these things are going to be with me for life.

08:12

Becky's on her way to the eating disorder unit,

08:16

where she spent 16 months as an in-patient

08:18

receiving treatment for her diabulimia.

08:21

I'm really nervous cos I haven't been back in quite a few months,

08:26

so it'll be strange seeing some of the actual staff.

08:33

This is us at the Eden Unit, at the front door.

08:36

It's nerve-racking, this.

08:48

As far as I'm aware,

08:50

the Eden Unit is one of very few units in the UK

08:54

which has been able to take on and treat people

08:57

who are suffering from an eating disorder with

09:00

Type 1 diabetes.

09:03

This used to be one of the old rooms that I stayed in.

09:15

That was the first or second night I was in, that one.

09:20

I got tubed because I wasn't able to physically eat.

09:25

I was just scared to. I didn't want to put on the weight.

09:28

I... I don't know.

09:30

I guess it's because I knew if I'd eaten something,

09:33

then I would have to take insulin with it

09:35

and that was the last thing I wanted to do.

09:39

Like I say, it is upsetting seeing them...

09:44

..but it's a good reminder of where I don't want to be.

09:54

Hello. Oh, come in.

09:56

Hello!

09:58

Haven't seen you for ages and ages.

10:00

Take a seat.

10:03

It's been a year and a half now.

10:06

It's as long as that?

10:08

At the time you came to us, I think you'd got in touch

10:12

with the danger of your condition and you were properly frightened.

10:16

And fortunately, it wasn't too late and you wanted help.

10:20

Becky's had three in-patient admissions with us.

10:23

The third and final admission that she had was very nearly fatal.

10:29

She only really got to us just about in time to put her through

10:33

the very delicate re-feeding process.

10:41

OK, so we're just about to head into the kitchen...

10:46

..where they're sort of preparing for afternoon snack.

10:56

I ended up on a compulsory treatment order.

10:59

I wasn't allowed to prick my finger on my own,

11:01

I wasn't allowed to take my insulin on my own,

11:04

no form of medication on my own.

11:06

It always had to be with a member of staff.

11:09

But then when the time comes for you to actually be handed it,

11:13

to take your insulin, that's the scary part.

11:16

You're like, "No, I don't want to."

11:36

Gemma has been in a diabetes ward in King's College Hospital for weeks,

11:40

waiting to hear if any eating disorder units can give her a bed.

11:44

I'm shaking.

11:49

I'm trying to get a place in an eating disorder unit in-patient.

11:57

It's just finding a bed

11:58

cos at the moment there aren't any beds in England,

12:02

and especially ones that know about diabetes and eating disorders.

12:09

Back in August last year, I was diagnosed with anorexia,

12:14

binge purge subtype.

12:17

So...it's like you either eat everything and make yourself sick,

12:24

or stop injecting your insulin,

12:28

or just get rid of the calories in some way.

12:33

My observation is that these patients are falling

12:37

between the nets

12:39

and, as a result, they're getting worse diabetes control,

12:42

they're increasing their risk of getting diabetes complications,

12:46

and of early mortality.

12:51

It's so boring in here that I've literally picked the tiniest drawing

12:55

that's in the book

12:57

so that I can spend as much time just not thinking.

13:01

So I don't have to just colour that.

13:02

I'm like just literally wasting time.

13:05

This Harry Potter one.

13:08

There's nothing to do in here.

13:09

And then a comic one, which is awesome.

13:13

Oh, my daughter's done some, though.

13:18

That's her artwork.

13:20

At home, I live with my mum, daughter.

13:24

My daughter's five years old.

13:26

This is to protect... And I've got my daughter's name, Evie.

13:31

So basically the line is protecting her.

13:34

I think she has some sort of idea.

13:37

Yeah, it will affect her soon and she will know.

13:40

But that's why I am here now, that's the only reason I am here, like,

13:46

to get better, and prevent her from getting one because...

13:53

..it'd be like the worst thing in the world.

14:04

Currently, access to information and support for diabulimia

14:08

is so hard to come by that, for some, it's too little, too late.

14:20

This is Lisa's diary.

14:23

"I feel so fat. Everyone looked at me today."

14:29

Lisa was 27 years old when she died.

14:36

Do you miss her?

14:40

Yeah, I do.

14:54

Yeah, this dress.

14:55

I think this dress is a size six.

14:58

And even then, it needed taking in, I think.

15:02

But naturally, I would say she was a size...sort of 10 to 12.

15:07

Her cheeks are really, really red in this -

15:10

it's a sign of not taking your insulin -

15:13

and in this one.

15:15

That one's quite a recent one, I think.

15:20

It was after Lisa died that I first heard about diabulimia.

15:24

Lisa's story was posted on social media

15:27

and, reading a lot of the comments, there were a lot of comments saying,

15:30

"Oh, I had this."

15:31

I don't even know if Lisa'd heard of that word before.

15:35

It's nothing that I'd ever had a conversation with her about anyway.

15:41

There's a series of pictures of her in the gym...

15:44

on here. Sending them to her friends.

15:50

It happened on the 7th of September.

15:52

This was taken on the 6th at 11:45.

15:56

There's one of her on her birthday here.

15:59

This was...

16:02

This would have been her last birthday that she was alive,

16:05

December 2014.

16:08

She looks a bit drawn in that picture.

16:14

It's just something that if she'd have help with earlier,

16:18

then...maybe it wouldn't have happened.

16:27

Mm...

16:31

CROSSING BEEPS

16:40

My parents know slight things with what I'm going through,

16:44

with the diabulimia, with the skipping injections.

16:47

What they know is that I'm skipping injections,

16:50

but they don't know...

16:52

They don't understand the mental health part of it.

16:56

But a part of me is too scared to tell them in person, face-to-face,

17:00

because of their reactions.

17:06

So are you meant to inject after every meal?

17:08

Yes. But you don't?

17:11

Not every meal, no. OK.

17:14

So, have you injected now?

17:17

No, I need to go up and inject, but I end up washing up instead.

17:28

It's very hard to understand what's going on in her mind, really.

17:32

Probably she's wishing she never had diabetes, you know?

17:36

She wishes she was probably normal, like other people without diabetes,

17:40

and at her age you want to eat and drink and do things that other

17:44

youngsters want to do, but she's limited.

17:53

Nabeelah told me it is an eating disorder

17:55

because I really don't know about eating disorders.

17:59

She's got this? Yeah.

18:01

Eating disorder? Eating disorder.

18:03

THEY SPEAK THEIR OWN LANGUAGE

18:18

We never expected to think that at 16 she'd be diagnosed with diabetes.

18:23

All these years, you know, she's grown up

18:26

and then just before her GCSEs,

18:28

she's diagnosed with Type 1 diabetes...

18:32

Which has changed everything, hasn't it, for her?

18:35

Yeah, changed everything. Yeah.

18:58

What are you thinking?

19:00

Do you wish you didn't have diabetes -

19:02

is that what you're thinking?

19:03

Then, what you thinking?

19:08

Do you think, by taking insulin, you put on weight?

19:11

Does that matter?

19:13

It's the main matter. Is that the main matter?

19:19

If insulin didn't make you gain weight, you would take it?

19:24

What's the maximum you've missed out on?

19:29

The maximum would probably be...

19:33

..not taking it at all.

19:35

For how long? Couple of weeks.

19:37

Not taking any insulin at all for a couple of weeks?

19:40

Wow.

19:43

That's naughty.

19:46

You didn't know she missed two weeks on the trot, did you?

19:48

No.

19:51

Never told this. Hmm?

19:53

Never, ever told this. Yes.

19:57

Well, glad you've told us now.

20:03

Love you, babes, remember that. Always and forever.

20:07

OK?

20:12

Take more insulin, OK?

20:16

Take sugar in front of me, OK?

20:18

This one, OK?

20:20

OK. OK, smile.

20:47

Honestly, you need to try this.

20:52

Gemma has been a patient of mine for nearly nine months.

20:57

Right, Gemma, how are you?

20:58

Did I see you yesterday?

21:00

I would say that Gemma is one of the most severe cases

21:04

of eating disorders in Type 1 diabetes.

21:08

So I'll tell you what the situation is at the moment,

21:11

there really are no eating disorders beds. There may be some,

21:14

but they will not at the moment accept you

21:18

because you are perceived as too complex.

21:22

People with Type 1 diabetes and eating disorders who get this ill

21:26

really do fall between the different types of hospitals -

21:31

the medical and the psychiatric.

21:32

Yep.

21:36

There is a lack of care for people who've got diabulimia in the UK.

21:42

I have heard of patients that have died whilst waiting

21:47

to get the right care.

21:49

We're going to keep exploring, trying to persuade these units.

21:52

I'm going to contact the diabetes teams

21:54

that are attached to the eating disorders units

21:57

to see if I can persuade the diabetes teams to provide you

22:00

the diabetes support as an in-patient.

22:03

VOICEOVER: What is difficult is that a lot of diabetes teams

22:06

may not necessarily have the expertise or the skill set

22:11

to carry out the assessments

22:13

and know how to ask patients about this problem

22:16

and, even when they do, that the services do not exist,

22:20

neither does the research evidence exist,

22:23

as to how best to support these people.

22:27

Apparently those clinics don't handle

22:29

diabetes and eating disorders very well,

22:32

so I'm just going to have to wait a little bit longer and

22:36

hope that a clinic will take, um, a diabetic. So, disappointed.

22:51

Nabeelah has come to a meet-up in London

22:54

for people in recovery from diabulimia.

22:56

The meet-up has been organised by the only UK charity

22:59

for sufferers of the condition.

23:02

I'm nervous.

23:03

I've never spoken to anyone else who's got this, really,

23:08

not in person, anyways.

23:13

I started Diabetics With Eating Disorders as a charity in 2009,

23:19

following the death of a friend of mine who...

23:24

passed away on an eating-disorder ward

23:27

surrounded by doctors who didn't really understand

23:30

what was going on with her.

23:31

So how is everything going?

23:34

Um... It's going, kind of...

23:37

JACQUELINE CHUCKLES It sucks.

23:42

Technically, diabulimia doesn't exist.

23:46

It's not in any of the big manuals that classify diseases.

23:51

When you're talking about insulin omission,

23:53

they're not the common eating-disorder symptoms,

23:55

they're more like body and shape concerns.

23:58

It is that inherent distress. I remember, when I was about 15,

24:01

having been diabetic for six years by that point,

24:05

all of a sudden there was a week where I was like,

24:07

"I can't inject myself. I can't do it."

24:09

And they sent me to a psychologist, basically like,

24:11

"Stop being so stupid." And so, from then on, I was like,

24:13

"Well, there's no point in talking to anyone about this."

24:16

Yeah. The pros for me were weight loss

24:19

and not having to inject, and eating whatever I want

24:22

and not putting the weight on.

24:24

Yeah. So it wasn't...

24:26

This is why I don't know if it's an eating disorder exactly because

24:30

I can eat whatever I want.

24:32

I'm not looking at what I eat, I'm just not injecting.

24:36

You're different. The minute you get diabetes, you're different.

24:39

You feel so isolated. I did.

24:41

I didn't know anybody that had diabetes.

24:44

Once you feel out of it, once you feel disconnected

24:46

from everyone around you, it's really easy to go on

24:48

that downward slope and start doing something to yourself.

24:51

The issue with diabulimia and the issue of...

24:57

..eating disorders being looked at in terms of weight...

25:02

..it doesn't work in this illness.

25:04

The second that you stop taking your insulin, you're on the clock.

25:07

You're in the same amount of danger, regardless of what your weight is,

25:11

if you're not taking your insulin.

25:13

You don't want that showing up on your dating profile -

25:15

"I'm 90% air up top."

25:17

"You take my bra off and it disappears!"

25:23

It's like the diabulimia version of Sex And The City, come on.

25:26

So nice to meet you. It feels great to meet you guys too.

25:29

We'll be in touch. Please do, reach out.

25:32

That's fine.

25:35

It wasn't what I was expecting.

25:38

It was really informal and...I enjoyed it a lot.

25:43

I'm glad I came.

25:45

It makes a big difference when it comes from someone

25:48

who's been in your place and you can see their recovery

25:52

because they can understand in a way that other people can't.

26:09

Now that Becky's in recovery,

26:11

she's injecting her insulin regularly and working on improving

26:14

the physical disabilities that her diabulimia has left her with.

26:20

Every time I come into the gym,

26:22

I have to just check my blood sugars to make sure I'm in a safe place to

26:27

actually carry on, um, with an exercise routine.

26:31

So what I'm doing is, I've just pricked my finger.

26:34

All I need to do is just soak up a little bit of blood.

26:40

I'm at 11.11, which is great for going into the gym.

26:45

So it's telling me I need to take two units,

26:48

and all my insulin's just in here.

26:52

And then you count for ten seconds.

26:57

Release, and out, and that's it done.

27:05

I take every day as they come

27:06

because I don't how I'm going to wake up in the morning.

27:12

The minute you wake up, you think, "I've got to take my blood sugars."

27:16

You can't... You don't get a day off.

27:18

Every day is all about numbers

27:21

and it's all about numbers with an eating disorder as well, so there's

27:24

double the amount of numbers flying around in your head.

27:33

I would tell, recommend to anybody,

27:35

"Don't muck around with your insulin, don't do it."

27:39

It's a dangerous game to start and, once you start it,

27:42

you kind of get obsessed with it.

27:44

There's no point in risking your own life.

27:50

You really want a shot!

27:52

I think to get a range of movement back in my feet

27:55

so that walking's actually going to be easier,

27:58

so that I could actually go and do things that I enjoy,

28:02

like going on a bike!

28:05

Or, I don't know, going dancing like I used to.

28:08

That would be amazing.

28:10

But little steps.

Inglese (Regno Unito)