So glad to see a dedicated section of the forum for this! I just want to say I'm so sorry about how many people are suffering with this, and to add to the number of people who are fighting it alongside you.
I was diagnosed type one aged 12, and am now 27. Suffered with diabulimia from pretty early on but wasn't really aware of it, just thought I was a bad person who couldn't do what she knew she had to. It was probaby about 12 years before I even heard the term diabulimia and learned that it wasn't just me. Jacqueline Allen and DWED are fantastic and the work they do sounds challenging, and it's great to see you've started there too Sarah
What I find frustrating, is that when I learned that it was essentially an eating disorder, I spent months trying to build up the courage to tell my doctor or nurse. When I finally did it, they were absolutely useless. They had no idea how to help, and although they offered to recommend psychological help, they couldn't refer me for it themselves so a recommendation was sent through to my GP, who then sent it to the local mental health services and they wouldn't see me because I'd already had therapy in the past (unrelated) and they didn't have the funding for me. A big part of this, is because most of the mental health services people are not knowledgeable about diabetes and do not understand how dangerous it is. So the diabetes team didn't do the psychological support and the psychological team didn't understand the diabetes part (luckily they're making progress here now). Anyway, I fought and fought (with the help of my family, thank god) and finally got therapy. I've had a few different types and only just found one that's working for me (It's only been a few weeks that I've been doing well but keeping my fingers crossed that I can keep it up), but in the meantime the last diabetes consultant I saw literally said "well it looks like there's nothing we can do to help so should we just discharge you?" (bearing in mind I've had a HbA1c of over 10 consistently for around 13 years and now have maculopathy). The only thing the diabetes team ever did in terms of trying to 'help' me with the eating problems was to constantly remind me of how I would die or go blind or lose limbs if I carried on doing what I was doing. And that fear was exactly the reason I had the eating disorder in the first place (that and my fear of hypos), misuse of my insulin was the only way I ever felt in control. When I try to do things properly, I never know what's going on, I go from low to high and back again like a yoyo and feel helpless and like nothing I do makes a difference. What I was doing with my insulin might sound stupid (and was definitely illogical) but at least I KNEW I wouldn't go low. It was the only time I could guarantee it.
Anyway the three key things I have learned over the years are:
1. Fear doesn't work. I thought the beginnings of background retinopathy would surely be the kick I needed to sort my life out. It wasn't. I needed help, and the fact that I wasn't getting it did not mean it was my fault I wasn't managing better.
2. For me, I HAVE to be on a reasonably low carb diet for the recovery to work. Trying to 'limit', 'cut down' or 'eat in moderation' did not work for me- eating sugary food made me feel high (good high not hyper) and settled my anxiety. If I had a tiny amount I couldn't stop. After the worst part (the first week) of cutting out sugar completely the compulsion to eat almost disappeared. I do crave sugar if I eat a carby meal, but it's much more manageable. But low carb avoids that trigger.
3. You have to persevere to get the therapy you need, and if/when you do, be prepared for it to not be a quick fix. I spent a long time desperately trying to reach the end goal (i.e. managing my condition) and getting frustrated that it was taking so long. In the end, thinking more about who I wanted to be rather than who I thought I was or what I wanted to achieve was much more effective. (For me, hypnotherapy and acceptance and commitment therapy have been the successful types).
Love to all
<3
Keep fighting and never be afraid to have a good cry/rant! xXx