Why I do what I do - this was written 3 years ago before I went into recovery - Warning could be Graphic

I Know I Cannot Be Alone?

Last Week:

I am on the tube and I am disgusting. Sweat is pouring down my face, I am bright red and shaking. My heart is racing and I swear for a second that it stops...and starts...and stops. My head is screaming and I can't see my hand in front of my face. My jaw is still aching from the tooth that I had extracted this morning and my kidneys ache. My mouth feels like I've been licking sand paper even though I'm considering getting off at the next station because I'm bursting for the toilet ..again. I rumage through my bag for a bottle of water but all that's there is empty chocolate bar wrappers....and my diabetes monitor.... I feel that familiar pang of guilt and wonder if this time I really have gone too far, is this the time I'm going to die? I have been hospitalised 3 times in the last year because of this thing that no one wants to talk about. This eating disorder without a name. I hang onto to this feeling and and promise myself to never forget it because it will be the last time I put myself through this. The Americans call it Diabulimia. I am in acute diabetic ketoacidosis, I know that this is fatal in 15% of all cases and I put myself in this state on purpose. Why would I do this to myself you might ask? I'll give you the same answer that I gave my therapist a year ago. Because I'd rather die than be fat. Then it used to be about the weight. To be honest now I just don't know.

I get off the tube and onto the bus. I am so exhausted that I don't feel like I'll make it to the front door. With every step I can feel my heart rate increase and I remember what my doctor said about the imbalance of electrolytes causing a heart attack not in a years time, not in a months time but maybe tommorow and that was last week. I struggle to open my front door I am so weak. Its 7.30pm I throw myself on the bed and drift off to sleep wondering if I'll wake up.

9pm: I wake up and have to bolt to the toilet and urinate for an abnormally long time as usual. My genitals itch with the thrush that dogs me constantly, I want to rip them off . I have stomach cramps but they're not from any menstruation issues as I've not had a period for well over a year now. I look in the mirror and see dead eyes, flaky skin and as I run my hands through my hair a big clump comes out in my hand. I go back to bed in the knowledge that I will not have a good nights sleep but rather one that is broken with frequent toilet breaks and if I'm having a really bad night, trips to the fridge, more sugar.

6:30am I have to set my alarm for this time even though I do not have to get out of bed till 8. It takes me this long to summon the will to get up. When I do its back to the toilet again and then straight on the scales. I am a lot lighter than I was yesterday. My BMI is below that needed for an anorexia diagnosis. I am severly underweight yet I look in the mirror and all I see is fat. I know that I am also Body Dismorphic. I call in sick to work... again... I know that soon I won't have a job anymore .... just like I don't see my friends anymore.... just like I don't play in my band anymore... just like I don't have a boyfriend anymore. I realise I have lost everything to the monster in my head. I wonder how much of me is left up there. I can't do it anymore. It's get better or throw my arms out to death and welcome it.... I sit my room crying and rocking for what seems a lifetime....I choose life..... I cry some more and I promise myself that today will be different, today will be the day that this stops and I mean it so I do something I've not done for too long. I inject. I cry, I cry a lot and and I vow to look for new ways to beat this. I am going to talk about it, scream about it, get mad, cry even more and probably screw up but I am at least going to try.

This Week:

I am angry. I have tried to reach out, to speak to other suffers. Apparently no one wants to talk about this eating disorder. I have emailed all the big forums to see if they would set up a Diabetic ED board and all of them have said no, 'We can not provide that due to the medical nature of your ED' apart from one that wasn't accepting new members. I have been berated by sufferers of other EDs. It reminds me of the last time I was hospitalised and begged my doctor not to discharge me because I couldn't be trusted, his response, 'I'm sorry but we just don't have anywhere to put you.''Well, I see this as an illness , just like any other ED and I think that I and others like me deserve a community where we can support each other in a bid to try an overcome this most serious combination of diseases

Oh JA…you poor thing. Are you well, now? Your picture has you beautiful and healthy. How did you get there? It must have been an horrendous struggle.

Yeah I am really well now thanks I have started a charity that represents T1’s with eating disorders. It’s going really well, I’m getting great support from other organisations and I am training people in how to spot it and what to do about it. I’m also really pushing the agenda in the NHS and stuff so I’m really pleased. I have always had ed’s before I was t1 I was anorexic and then bulimic. This is the one I was sure was going to kill me and it very nearly did on several occasions. Then I found the support group on facebook and everything kind of went from there. I desperately wanted to get back to uni also and I knew that would be impossible. It just got to that point, live or die and trust me at that point it’s a roulette there is nothing special about me that meant I recovered. Just as many have died or gone blind, or developed crippling neuropathy, gastroparisis. It was pure dumb luck that I got through it but it is for this reason that I do what i do now :slight_smile: And I still don’t know what the long term consequences will be. I try not to think about that now though and just take everyday as it comes :slight_smile:

It sounds as though you are helping many through your work. Glad you are doing well.

It sounds like quite a journey. No doubt you are not the only one suffering from it but what makes you different is that you choose to help others with it. I have a good friend of mine that has some of the same problems as you menitoned and she told me similar things like no will talk about it or is very awkward. I asked what she see’s in the mirror and was saddened by the response. I’m glad that you blogged your experiences and made it public, it took courage which takes strength away from diseases. Lisa

A frightening blog. It makes me change my mind on the diabetes as an eating disorder issue. As a T1 who was diagnosed as a child, food and eating always had a negative connotation. That mindset is still in my head. I don’t mind it being there. It has made me disciplined. Where food had once been sacred, it became poison. As a child I would overeat. It had to do with burning keytones. I always felt hunger and thirst. This still is present. I also had poor education and was resistant to blood sticks. As an adult I don’t do those things anymore. Diabetes is such a complicated disease. I can’t imagine adding bulimia/anorexia or refusal of insulin into the mix.

I’m definitely not the only one. The facebook support group has nearly 400 members. Also stats from the Joslin Diabetes Center in the states (linked to Harvard) state that 40% of t1 females between the age of 15 - 30 regularly omit insulin for weight purposes. Of course this runs on a spectrum from those that ‘crash diet’ for an event through to those who end up like me. The issue is that DKA doesn’t care, you can try it once and die. That is why it is a medical emergency the second someone deliberately omits. This is the agenda I’m trying to push the NHS, once it gets a grip it can behave remarkably similarly to ana or mia, but it is important that we remember the root causes can be entirely different. For example hypo fear is common, moral judgements on food are nearly promoted by diabetes educators and the constant association between diabetes and obesity in the press and binging after a hypo can all be contributory factors. That is why it is desperately important to fully understand the individual with the ED.

Thank you for your kind words they’re appreciated :slight_smile:

Also Lisa,

Point your friend in my direction - I’d be more than happy to help :slight_smile:

Takes a lot of courage to go through what you struggled with to heal yourself.

An illness on top of another illness–I can’t even begin to imagine.

Thank you for sharing this & for sharing with the others you help.

Oh my goodness, I feel so proud of you!! True I don’t know you, but you are so brave and so wonderful to write of this in such detail so others can understand, and, to have begun the charity. I feel so sorry you have gone through the pain you have, but I feel honored to have read and seen your post here about this and your journey. You are really an inspiration to have come through it and to be training others about this and forming groups and charities around it. Really, you are inspiring – stay strong!!!

this is an incredible story - Jacq, what is the name of your organization? thank you for sharing all of this with us.

Hi All,

Just want to say a big thank you for all of your incredibly encouraging comments. My organisation is Diabetics with Eating Disorders www.dwed.org uk :slight_smile:

For what it’s worth I’m glad I went through it. I was anorexic/ bulimic as a teenager before T1 and I was amazed at the discrepancy in care between my anorexia and my deliberate ommission. I think that until it is in some way formally diagnosable then we are allowing all of these young t1’s to slip through the net. They are being seen by ED specialists who know nothing about diabetes and diabetes specialist that know nothing about ED’s. Just last week I had a girl finally admit to her DSN (after much support from our facebook group) that she wasn’t taking her insulin to lose weight, unfortunately for her she used the dreaded term ‘Diabulimia’ and as a result was told that what she had only existed on the internet and she should just take her insulin. This makes me sad and very angry. The health service had a chance to help and they didn’t due to semantics. The girls deserve better and that is why I’m glad it happened to me and I am old enough to be taken seriously. Sometimes the girls are just dismissed as stupid teenagers… I just thank god that this girl had our support group. I have already phoned the diabetes nurse in question and sent her a brief info sheet and some links to academic papers on eating disorders in T1, but what if this girl had no one? What if that was the first time she had told anyone? The amount of ignorance surround this in the UK is staggering.