Clare, 24
The first time I omitted my insulin was when I was 18 soon after starting university. I can even put a date on it… Weds 21st Jan 2004.
Why did I start omitting insulin?…I was beyond the point of caring. I was so depressed and so sick of my eating disorder, so trapped in a never ending cycle and I knew that skipping my insulin would give me the weight loss I so desperately desired. I had never heard of diabulimia but I knew all the science behind insulin and blood glucose control. I knew all about DKA and how my body would be unable to convert the food I ate into energy and would instead basically start digesting itself. And although misusing insulin was one thing I had promised myself I would never do I had sunk so low and fallen so far into the ED trap that I just didn’t care about the consequences and the possibility of death. All I cared about was the fact that I knew for a certainty that no insulin would mean drastic weight loss.
To anyone thinking of misusing their insulin I would say please don’t do it, it just isn’t worth it. It makes your life hell, it’s not living at all, it’s barely surviving. There is nothing glamorous about it, yeah you lose weight quickly but you also lose so much of your life.
I always promised myself that no matter how bad my eating disorder got I would NEVER EVER let it result in uncontrolled diabetes. I've been diabetic since I was tiny and have grown up knowing the importance of good control and knowing all the dangers and complications of uncontrolled diabetes. And it worked for a long while...from the age of 12 (when i first developed disordered eating habits) until 18 I had good control of my diabetes.
But then something changed and one day I skipped all my insulin...the next day I felt such a sense of elation when my weight was down, despite feeling ill from high blood sugar levels the desire to lose weight over rode all my instincts to control my diabetes.
And it progressed from there. I can tell you now it is absolute hell and not worth it at all. So why did I keep doing it? It was stupid I know but it's like the bulimia, once I started it, it just kind of got out of control and began controlling me rather than me controlling it. It seems so pathetic...all I needed to do is pick up that insulin pen and inject myself...not difficult huh? But the internal battle that goes on, takes everything out of me.
My mum was terrified that she would find me dead in my bed one day. My family was constantly treading on eggshells around me. My friends didn’t know how to deal with it. My consultant told me that I was walking on the edge and anything could tip me over, with my blood sugars and HbA1c being so high he was really surprised that I hadn't already been admitted to hospital in DKA.
One of the lowest and most scary points came one day whilst I was on placement at uni. My blood sugar levels had been dangerously high for weeks and I had been surviving on barely any insulin. That particular day I had taken no insulin for 5 days, I had spent the whole weekend alone in my room, bingeing and purging multiple times.
I went to my placement as usual (on a children’s ward, I was studying children’s nursing) but was feeling extremely unwell. By mid morning I could barely function, I felt so sick and thankfully managed to get to the bathroom before I involuntarily vomited extremely violently. I got sent home. I had such a raging thirst that nothing could quench, every muscle in my body ached and my heart was racing. On the way out of the hospital I bought two 2 litre bottles of coke and by the time I got off the bus 15 mins later I had drunk both bottles and was still so thirsty. I don’t know how I managed the 2 min walk from the bus stop to my room. I was fighting to breath, I could hardly stand up and I vomited in the bushes twice. On entering my room I threw up everywhere and fell onto my bed. I remember seeing my insulin pen so grabbed it and drew up the maximum dose it would allow me to and injected it. Then I literally collapsed and when I woke up I realised I had been out of it for almost 24 hrs. I tested my sugars and the metre flashed HI (above 33.3) so I dread to think what my reading was before I gave myself the insulin.
That was my closest call with death; I think I got that insulin in me just on time. That experience really frightened me and was a real wake up call to how sick I had become. I was so disgusted with myself for allowing myself to get in such a state and I desperately wanted to change but I couldn’t let myself get help because I was too scared to let go of the perceived control I felt I had.
In June 2004 I hit a really low point. One day I cried down the phone to my mum for 45 mins, she sent my dad to uni to bring me home and when I got home she was on the phone to my diabetes nurse telling him that I needed help because I had bulimia. From there I was referred onto a psychiatrist and then onto specialist eating disorder services.
At first I was having twice weekly therapy which was helpful in getting me to understand some of my ED behaviours but rather than my health improving it got worse as I was trading off one behaviour for another. For example I was eating more regularly but taking less insulin because I was terrified of the effects that regular eating would have on my body. The professionals treating me at this point were treating the ED as something completely separate from the diabetes which was really bad because for me they were totally linked into each other.
After it became clear that this programme wasn’t working I was referred to the ED unit and onto an intensive day patient programme. At first I felt like none of the therapists or nurses understood and that they thought I was just being stubborn and attention seeking by not taking my insulin. I knew far more than they did about diabetes and this created problems because at first they expected me to be responsible for controlling my blood sugars and taking my insulin, which pretty much amounted to the equivalent of asking the anorexics in the unit to make sure they ate their meals! After a while I was admitted as an inpatient and the nurses became responsible for my blood testing and injections. At first I really rebelled against this because I didn’t want them to have that kind of control, but I eventually accepted that in order to get better I had to comply fully with the professionals.
It was extremely difficult once I started to get regular insulin again because I was constantly having hypo symptoms when my sugars first started coming back down. I had spent so long with readings above 30 that it had almost become normal for me. Also my blood sugars fluctuated widely and did actually go low a lot partly I think because the psychiatric nurses didn’t really understand about carb counting and altering my insulin so had me on preset doses and didn’t trust me when I said I needed less or more insulin.
I spent a lot of time feeling very frustrated because although the professionals were able to support me from an ED perspective for some of them it was the first time they had to deal with a diabetic and the unit had never had a diabetic patient before…so that didn’t fill me confidence or hope that they knew what they were doing. No one understood my fear about insulin and weight gain, they all tried to fob me off and tell me I was imagining it and that it was all part of the my eating disordered mind lying to me. Even when I quoted the scientific facts at them they still tried to make me believe that taking insulin would in no way affect my weight. A lot of the time I felt that that they thought of me as a ‘naughty child’ refusing to take my medicine because I didn’t like it.
After being discharged from inpatient treatment I was still very much eating disordered and had the mindset of a person with an ED. But gradually over the past 2yrs I have moved away from that and remained solidly in recovery. I’m not saying that all my issues have gone and that everything is fine but it is certainly a lot easier. I still have days when I struggle to eat or have times when I have an urge to purge, I can’t look in a mirror and like what I see and some days I am really tempted not to take my insulin. But I know how hard I have fought and how much progress I have made, rationally I know I never want to be back where I was, it was an extremely dark and scary place. I don’t know if the thoughts and the mindset will ever completely disappear but I can keep them contained and not let them overwhelm me.
For anyone who is just starting down this route please, please get help now. I know I may sound hypocritical but it is so much better and easier to ask for help and admit you are struggling before this has taken a really deep hold over you. Once you begin down this path it very quickly grabs hold of every part of your life and it is a whole lot harder to get out of than to get into.
Why did I start omitting insulin?…I was beyond the point of caring. I was so depressed and so sick of my eating disorder, so trapped in a never ending cycle and I knew that skipping my insulin would give me the weight loss I so desperately desired. I had never heard of diabulimia but I knew all the science behind insulin and blood glucose control. I knew all about DKA and how my body would be unable to convert the food I ate into energy and would instead basically start digesting itself. And although misusing insulin was one thing I had promised myself I would never do I had sunk so low and fallen so far into the ED trap that I just didn’t care about the consequences and the possibility of death. All I cared about was the fact that I knew for a certainty that no insulin would mean drastic weight loss.
To anyone thinking of misusing their insulin I would say please don’t do it, it just isn’t worth it. It makes your life hell, it’s not living at all, it’s barely surviving. There is nothing glamorous about it, yeah you lose weight quickly but you also lose so much of your life.
I always promised myself that no matter how bad my eating disorder got I would NEVER EVER let it result in uncontrolled diabetes. I've been diabetic since I was tiny and have grown up knowing the importance of good control and knowing all the dangers and complications of uncontrolled diabetes. And it worked for a long while...from the age of 12 (when i first developed disordered eating habits) until 18 I had good control of my diabetes.
But then something changed and one day I skipped all my insulin...the next day I felt such a sense of elation when my weight was down, despite feeling ill from high blood sugar levels the desire to lose weight over rode all my instincts to control my diabetes.
And it progressed from there. I can tell you now it is absolute hell and not worth it at all. So why did I keep doing it? It was stupid I know but it's like the bulimia, once I started it, it just kind of got out of control and began controlling me rather than me controlling it. It seems so pathetic...all I needed to do is pick up that insulin pen and inject myself...not difficult huh? But the internal battle that goes on, takes everything out of me.
My mum was terrified that she would find me dead in my bed one day. My family was constantly treading on eggshells around me. My friends didn’t know how to deal with it. My consultant told me that I was walking on the edge and anything could tip me over, with my blood sugars and HbA1c being so high he was really surprised that I hadn't already been admitted to hospital in DKA.
One of the lowest and most scary points came one day whilst I was on placement at uni. My blood sugar levels had been dangerously high for weeks and I had been surviving on barely any insulin. That particular day I had taken no insulin for 5 days, I had spent the whole weekend alone in my room, bingeing and purging multiple times.
I went to my placement as usual (on a children’s ward, I was studying children’s nursing) but was feeling extremely unwell. By mid morning I could barely function, I felt so sick and thankfully managed to get to the bathroom before I involuntarily vomited extremely violently. I got sent home. I had such a raging thirst that nothing could quench, every muscle in my body ached and my heart was racing. On the way out of the hospital I bought two 2 litre bottles of coke and by the time I got off the bus 15 mins later I had drunk both bottles and was still so thirsty. I don’t know how I managed the 2 min walk from the bus stop to my room. I was fighting to breath, I could hardly stand up and I vomited in the bushes twice. On entering my room I threw up everywhere and fell onto my bed. I remember seeing my insulin pen so grabbed it and drew up the maximum dose it would allow me to and injected it. Then I literally collapsed and when I woke up I realised I had been out of it for almost 24 hrs. I tested my sugars and the metre flashed HI (above 33.3) so I dread to think what my reading was before I gave myself the insulin.
That was my closest call with death; I think I got that insulin in me just on time. That experience really frightened me and was a real wake up call to how sick I had become. I was so disgusted with myself for allowing myself to get in such a state and I desperately wanted to change but I couldn’t let myself get help because I was too scared to let go of the perceived control I felt I had.
In June 2004 I hit a really low point. One day I cried down the phone to my mum for 45 mins, she sent my dad to uni to bring me home and when I got home she was on the phone to my diabetes nurse telling him that I needed help because I had bulimia. From there I was referred onto a psychiatrist and then onto specialist eating disorder services.
At first I was having twice weekly therapy which was helpful in getting me to understand some of my ED behaviours but rather than my health improving it got worse as I was trading off one behaviour for another. For example I was eating more regularly but taking less insulin because I was terrified of the effects that regular eating would have on my body. The professionals treating me at this point were treating the ED as something completely separate from the diabetes which was really bad because for me they were totally linked into each other.
After it became clear that this programme wasn’t working I was referred to the ED unit and onto an intensive day patient programme. At first I felt like none of the therapists or nurses understood and that they thought I was just being stubborn and attention seeking by not taking my insulin. I knew far more than they did about diabetes and this created problems because at first they expected me to be responsible for controlling my blood sugars and taking my insulin, which pretty much amounted to the equivalent of asking the anorexics in the unit to make sure they ate their meals! After a while I was admitted as an inpatient and the nurses became responsible for my blood testing and injections. At first I really rebelled against this because I didn’t want them to have that kind of control, but I eventually accepted that in order to get better I had to comply fully with the professionals.
It was extremely difficult once I started to get regular insulin again because I was constantly having hypo symptoms when my sugars first started coming back down. I had spent so long with readings above 30 that it had almost become normal for me. Also my blood sugars fluctuated widely and did actually go low a lot partly I think because the psychiatric nurses didn’t really understand about carb counting and altering my insulin so had me on preset doses and didn’t trust me when I said I needed less or more insulin.
I spent a lot of time feeling very frustrated because although the professionals were able to support me from an ED perspective for some of them it was the first time they had to deal with a diabetic and the unit had never had a diabetic patient before…so that didn’t fill me confidence or hope that they knew what they were doing. No one understood my fear about insulin and weight gain, they all tried to fob me off and tell me I was imagining it and that it was all part of the my eating disordered mind lying to me. Even when I quoted the scientific facts at them they still tried to make me believe that taking insulin would in no way affect my weight. A lot of the time I felt that that they thought of me as a ‘naughty child’ refusing to take my medicine because I didn’t like it.
After being discharged from inpatient treatment I was still very much eating disordered and had the mindset of a person with an ED. But gradually over the past 2yrs I have moved away from that and remained solidly in recovery. I’m not saying that all my issues have gone and that everything is fine but it is certainly a lot easier. I still have days when I struggle to eat or have times when I have an urge to purge, I can’t look in a mirror and like what I see and some days I am really tempted not to take my insulin. But I know how hard I have fought and how much progress I have made, rationally I know I never want to be back where I was, it was an extremely dark and scary place. I don’t know if the thoughts and the mindset will ever completely disappear but I can keep them contained and not let them overwhelm me.
For anyone who is just starting down this route please, please get help now. I know I may sound hypocritical but it is so much better and easier to ask for help and admit you are struggling before this has taken a really deep hold over you. Once you begin down this path it very quickly grabs hold of every part of your life and it is a whole lot harder to get out of than to get into.