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Recovering from diabulimia | Diabetes UK

October 9, 2019


One of my friends, we have a group called
Beyonce’s backup dancers, so you can see that is a big font. Yeah. So what’s it
like to have your vision start to go? Probably the most terrifying thing has
ever happened to me. I started seeing like little black dots floating around
my vision especially in my left eye and also things have becoming a bit
distorted there was a lot of bleeding the hemorrhages the retina in my left
eye had almost completely detached they needed to do something straightaway to
try and save my vision. Why would you put your vision at risk to sort of lose
weight? An eating disorder is territory that
not many people would be comfortable talking about anyway, so explaining
that the thinking behind it is really difficult. I didn’t really realize I had
a problem this thing called diabulimia, I didn’t realize it was a thing. I haven’t until now really spoken to anyone about it. Having parents that did
understand diabetes quite well meant that my control was always really
good as a kid in school I would always get comments and the teachers at how
well I looked after it and how mature I was in dealing with everything but
that’s all before that age where you kind of become quite self-conscious and
there were comments when I was 11 why are you injecting yourself in front of
everyone it’s disgusting started feeling that I didn’t want to do that in front
of people so I didn’t do it and I realized actually I was fine, nothing serious came
of it. It wasn’t until a few years later that it became a you know when you
stopped coming quite self-conscious teenager like 16, that it actually I’ve
began noticing the link between not doing insulin and losing weight. You know
that age everyone’s in that really conscious of what they look like. So what
was the idea in your head? Just that I wanted to be a bit thinner,
I’d have friends being like oh wow I didn’t realize how skinny you were
you’re looking great like you’ve lost a bit of weight that’s because you’re
running so much and I’d be like yeah it is, it was almost as if I was
convincing myself that was the reason why as well those kind of
comments kind of boosts you a bit even though even if they’re not based on the
truth you know someone telling you you look good is always gonna make you feel
good and you know I’ve never really had that before I thought this is great I’m
gonna carry on doing this because I think I’m feeling happier obviously
retrospect is a wonderful thing. How old are you here? 21 on my graduation
day I wasn’t very well I look really happy but I didn’t really
enjoy uni, I mean I did go out a lot like any student and have fun and stuff
but I think it I think the diabetes stuff overshadows quite a lot of it
because I was in such a bad place with it and yeah there was some really low
points at university. Don’t want to get out of bed, don’t have any
motivation to do anything at all or speak to anyone. I was diagnosed with
depression and give them medication for that and I think a lot of that was
because of diabetes and the way I felt about diabetes but that was never addressed, ever.
You mean it was just seen as a separate thing? Yeah yeah I was given
antidepressants and that was it. And they didn’t ask you about diabetes? No
and again I don’t necessarily blame anyone for that but that but there were a lot of missed
opportunities to catch things before they got to the stage they did. And you
weren’t gonna mention diabetes? I wasn’t gonna bring it up unless I had to,
because I didn’t want to deal with it. like I was I was really happy with how
skinny I was and I was really scared of getting to the point where I’d have to
sort things out because I knew how difficult it was gonna be. I don’t think I saw the diabetes team the whole time I was at university. Really? Yeah. I wish I was a
bit more able to ask people for help when I needed it I mean I probably woulnd’t be able to count the number of times mums had sleepless nights over worrying about
me and not that she’d tell me that. I see my mum was my closest friend as
well. How long did you feel like you had this and were hiding it from your mum?
Six years really yeah Hello! Hi, how are you? So did you know about diabulimia as a thing? I vaguely heard stuff about youngsters running their
blood sugar levels high in order to lose weight. And did you ever think that would
be Lindsay? I was beginning to suspect that she told me all through university
that she was sorting things out with the diabetes team we all thought everything
was fine I’m had this fabulous daughter who was managing her diabetes really
well and she’d gone through and got a law degree and was really bright and
clever and then suddenly all came crashing down and Lynsey
eventually phoned us and told us about all about her eye problems. I’d been
avoiding telling you because I knew how much it would upset you that’s the last
thing I’d want. I know that parents and things can often feel some some guilt
and or they’ve miss something or what are your thoughts on that? No of course I
feel guilty I feel guilty that I wasn’t able to support Lindsay more yeah it’d
have been nice to have known at the time things that got a bit too much. do you
feel like you couldn’t do anything about it?
absolutely I didn’t know where to go to to get the right kind of advice for
Lindsay, just add to the feeling of inadequacy and impotence to do anything
I was getting emotional affected me I ended up having to take time at work and
I hate the thought of you worrying I feel like I’ve put you through. I worry
less because I feel you’re engaged and you’re actually thinking about how
you’re going to put put it right yeah I know there’s there’s moments when things
are still a struggle we all appreciate what’s been happening and what you’ve
been going through I’m hoping now that you’ve told me
what’s going on that you’ll now be able to pick up the phone and say. I think the
last few months there has been a lot more honest well you know that we are
always here and we’re always ready to talk and you know when you’re looking
a lot healthier and happier at the minute. yeah.
thank you very much for being so open. great see you later yeah okay love you That kind of upset me
actually really yeah I guess I knew she’d gone she’d had time off work for
stress and stuff I didn’t realize that I was kind of a contributing factor to
that I mean it seems pretty obvious now but I wish I hadn’t put her through
that. I’ve got so used to not doing tests with every meal and not doing injections
every meal and not taking into consideration what my blood
glucose levels were before going out the house and then having to actually go
from doing nothing to all of that in one go just seemed impossible. All the eye
consultants were saying to me you’ve got to get yourself together and
and get it sorted out. Were they basically like you’re gonna go blind if you don’t
change? Kind of yeah I was warned that if I carried on did get to a point where
they won’t be able to do anything I had such a scare I’d kind of
scared myself back into doing it but then that was fine for a bit until you
know I realized that my clothes weren’t fitting and I was putting on weight
really fast and that made me feel awful. How did you figure that out on
your own I don’t know why I ever agreed to do it
but I’m glad I did I went on DAFNE course, A structured education course, and I
was a room with five other diabetics and even just joking
about some of the annoying things that living with diabetes made me feel a
million times better. Speaking to other diabetics it’s been more valuable than
any clinic appointment I’ve ever
had. Do you think that’s true? Yeah. Did it never occur to you to approach any like
healthcare professionals around you know I think I might be doing something wrong
here is there any way we can talk about it or? I tried once or twice I mentioned
it a few times I was concerned about my weight and I didn’t I was having I was
feeling burnt out with diabetes and I didn’t want to do it but quite a
lot of the time it had just been met with advice like well make sure you do
a blood test because they’re really important we’d talk about numbers and
because my hba1c it was bad because the blood test I’d had in clinic were bad it
was almost being liked told off at the moment there’s no clinical definition of
diabulimia and i think that means it’s not taken quite as seriously as other
eating disorders it wasn’t that long ago I mentioned it to my diabetes team
and they weren’t really sure what the issue that I hadn’t really heard of diabulimia they didn’t really know what it meant if I was feeling really distressed
or maybe had more feelings like I used to about not doing my insulin I don’t I
don’t really know where I’d go. does that worry you?
yeah. I feel like you don’t have a safety net. no I don’t have a safety net. it’s
scary actually because not a bit not knowing where to go. so I you’d said that you had like no
safety net, so I thought would be good to arrange for you to meet someone and have
you ever spoke to a specialist before? never. third floor. All psychology stuff
is here but then also the diabetes research group. both things. Hi I’m Lynsey, nice to meet you. It’s such a private thing isn’t it painful private
condition just desperate it doesn’t happen to other people.
I mean I’ve lost my some of my eyesight and I’m constantly thinking about my weight and
everything but I don’t miss my insulin I consider myself recovered so it’s kind
of like you get to that point of you accept that that’s what happened to you
I have patients that come and you just think if only somebody just asked you
this earlier you know my heart bleeds out for for people in your condition
that been suffering all that time and nobody has got around to asking what is so
obvious so obvious that you’re struggling and you’ve had to therefore
play it four, five, six years before you get around to having help so that’s the
first thing that I feel really sorry for you I feel quite cross you know I don’t
think we should blame the diabetes doctors and nurses, no , and I really don’t
because I do think they’re absolutely brilliant and what they do like they
know there diabetes inside out from a medical point of view and it’s not their
fault because they’ve not been given those skills it’s very easy for me
because I’m a psychiatrist and so I know how to ask these questions that’s what
my training has been and because I’ve been working in diabetes for 20 years I
also know how to ask about diabetes mental health questions I’m trying to
work out what’s going on in your mind you know there’s you sitting here but
I’m actually trying to think what is she thinking what is it that she’s finding
difficult about her diabetes. I imagine she really hates it you know like hates it
with a vengeance like hates it hates it hates it and
how do you look after something that you hate you know nobody can. sometimes I’m in a clinic appointments and I’m thinking you’re making this sound so
easy and then not only
do I kind of resent them for that but it also makes me resent myself for
finding it so difficult. yes yeah. actually speaking to people that really
get it makes a big difference. I hear that a lot, the whole day the rest of the
day is ruined whenever I started off with good intentions is ruined and then
the feeling like failure what have I done wrong so it’s all my fault
and then the extra effort you have to put in to get it right I’m not sure if
you will be able to yeah you know and then I think your feeling of that it’s
going to bring on complications Oh all those complications that I’ve
been told about so if you have all of those thoughts going on in your head
what people do is switch off and avoid my way of controlling that
situation was to not control it so by avoiding it that was my control
mechanism for something that I couldn’t really control even though I was
supposed to control them. from a psychological point of view it’s a way
of punishing the diabetes for coming into your life yeah you feel a bit like
oh it’s really unfair that I have this so why should I look after it yes and
actually I’m not going to. yeah your story is a very typical story of
suddenly you realize oh I can lose weight you’ve not done it deliberately
you suddenly find yourself in a situation where you haven’t given yourself the insulin for whatever reason like yours which is I just forgot and
then suddenly you realize oh if I don’t do this I actually lost a kilogram in a
couple of days Wow and and you don’t feel too ill you like how you look like
your friends notice it and suddenly it becomes a habit forming. I was just really
angry at myself for not not being able to break the cycle of doing it but there
was just something in me that was like you if you start doing insulin you’re
going to put on those away and that’ll make you really unhappy I try and look
at it logically now and think what on earth was I thinking why did I put those
two things together and put that above, I always think of is the
weighing scale, yes, the fear of weight but you want to be better and
you’re always in that sort of mind of which one do I do
it was horrible that there’s also a massive part of me that’s like you’ve
already had a lucky escape with your eyes right you know I’m 25 and I
want to start thinking about my future and you know if I want to have a family
I can’t have a family unless I’m looking after myself and enough is enough that
kind of thing. so what was it like giving yourself the right amount of insulin?
there were a lot of things that made me feel really good but the weight gain was
quite quick right and I there were several times where I just wanted to go
back to doing what I was doing before my pump actually failed
it was way out of warranty and just stopped working and they put me
on pens just for a week while they sorted out another pump that I actually
decided to stick with pens for a bit because I felt that that would give me
more structure having a routine where did a blood test, counted my carbs, took my
injection that really helped me and my head actually actually get a grip on
everything. For somebody to get better either they’ve got to get to that
point of exhaustion enough enough is enough I’ve had enough of this
maybe they’ve got to have had the first sign of a complication, sounds like
that was what you were beginning to think and then changing your technology
from whatever to whatever, some people might find going to a pump might be more
helpful. I think also what you’d said which is important is that you’ve felt
that feeling of betterness you really liked it, so I think that seems to
be an important thing is that you feel that you noticed oh I can sleep better
I’m not waking up every hour to go to the toilet or I can concentrate my
productivity is improved, I’m just happier yeah
so patients will want to negotiate that they’ll say I’d rather have that than
the weight. you being like this from the age of 15
really nearly 10 years you must have been thinking about it all that time I
must do better you know you talk about this Black cloud that was always there in
the back of your mind that you’ve got something to sort out. Part of me was this is
this is how I’m always gonna be and I cannot in any way shape or form see how
I’m how things will be any different I cannot imagine getting up in the
morning and doing a blood test I can’t imagine counting my carbohydrates
properly with a meal but that feeling that there’s always something there that
you’re not dealing with and it just I think it got to a point where I just
boiled over and as I can’t ignore it now. so what do you think about how do we
help people who are out there not ready. it’s so difficult especially when
it’s something that people don’t want to talk about. speaking to your friends and
family is more powerful than you can imagine
because if you’ve not been telling them and now you tell them it’s a massive
weight off your shoulders I think actually activating support you’ve
already got and realizing there are people out there that really care and
love you and want to help I know for a fact that my parents and my family would
have been really right there if I let them in, yeah right there you’ve just said a
really important point if I had let them in, actually maybe that’s the critical
point this is actually what people with diabetes needs just a little bit more
compassionate with themselves and a little bit more confident about letting
somebody into their lives into that inner world the best friend their partner a
family member because those friends and family are actually aware they’re
actually worrying so it’s not like they won’t be surprised and I think you might
find that more powerful than looking for the expert as the first step. even if you
do want to go ahead and find the experts yes then you’ve got someone do helping
you to find that as well so it’s not quite so isolating and
it’s not going to get worse by you talking about it. that’s a really good point actually
what’s the worst that can happen by you saying to your mom when you’re 18-17,
saying to your mom I’m struggling what’s the worst that can happen? well I can’t
think of anything bad that would have happened. you’d have got a cuddle yeah
wouldn’t you and a mum that would have said well let’s do this together
from what you’ve told me so I think you’ve helped me as well
you’ve made me realize actually the simple the easiest simplest thing is
free and it’s there right in front of you
yeah speak to your speak to the person that you feel that you can trust or will
understand it might feel like a massive mountain but actually you might
be pleasantly surprised that there are more people out there that will
understand you respect you and want to help you. Has these been positive? yep
that’s very interesting. the problem is diabulimia it’s actually
just saying that there’s an issue and I didn’t for a long time before it wasn’t
even something I would admit to myself that I was struggling with I kind of the
more you tell a lie or the more I hid things the more I
convinced myself that it was fine as well it wasn’t about the weight it was
just I needed a break but that break lasted for best part of six years. it’s
likely of someone watching you talk they’re worried about the things that
they’re doing and therefore found this what do you say to that person? it’s easy
to say but speak to someone if you don’t speak to someone it just gets
worse so you will feel better when you have acknowledged that this is a problem
I kind of wish I’d just said to myself just say something now and don’t keep
going on. I for a long time felt like because I’d got into such a deep hole
with not managing thing that it was going to be impossible to get to change
it around but the right people can help you get there I didn’t think I would now
be at 25 and managing my diabetes as well as I am and I’m not perfect my
hba1c is not perfect but you’ve even talking about it on a camera it’s quite
it’s a bit like therapy. really? yeah I guess this is is now me finally
admitting that it happened but not until after it happened. I think you’ve done a
really good thing because not a lot of people talk about this. it needs to be talked
about. It really needs to be talked about well good for you for doing it. Thanks you

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2 Comments

  • Reply Suzanne Schneider March 5, 2019 at 10:41 pm

    This is such a powerful video and resonates completely with my story. Lyndsey you are very brave sharing your story – thank you

  • Reply Raissa Feldman March 14, 2019 at 6:43 am

    Hey Lindsay I also had diabulemia as a teen, and now I don’t amymore but I would love to talk to u. Today I have all diabetes complications
    Please contact me [email protected]

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