Strength in loss: eating disorders and diabetes

People living with diabetes are up to two and a half times more likely to develop an eating disorder. Research suggests that up to 40% of young people living with Type 1 diabetes are also experiencing disordered eating or engaging in disordered behaviours to maintain their weight. For some, it can lead to an eating disorder. Sienna is one of them.

Trigger warning: Hospital admission, eating disorder behaviours, medical complications

 

My name is Sienna Harmony Wiltshire, and I am an eating disorder survivor currently awaiting a kidney transplant.

A friend of mine once said to me before he passed, “you’re protected” and I never really gave a second thought to what he meant by it. “Whatever life throws at you, you can handle I already know that. You ain’t built to be broken, you’re protected”, he said.

This was still in my early recovery stage but my illness had already cost me greatly by then.

I’d had my gallbladder removed from rapid weight loss, two heart attacks, almost lost my leg to third degree burns I couldn’t feel because of nerve damage, had a couple toes amputated and spent six months in hospital trying to save my leg. When my kidneys started failing, I started to think more about life and how I got to be where I am. Of course it was a low point for me, but when I went blind in my left eye finally I questioned out of frustration… How the hell am I protected?

I’m a kid who came from nothing, my mum scraped together some money to buy me a toy and threw me a little party to commend me for being so brave when I first got out of hospital after being diagnosed with type 1 diabetes. My older sister Tawny was excited to have me home; the three of us were so close. Back then I couldn’t even imagine what I was going to put them through, I had no idea how many times my health would break our hearts.

I was thirteen when I worked out I could make myself look a certain way by the way I used my insulin, I was fourteen the first time I was hospitalised for it. I was sixteen the first time I ended up in the intensive care unit, sixteen when I had to quit dancing because my body was too weak.  I became so obsessed with the weight loss that I ignored what it was doing to me, and had to drop out of school because I was too unwell to go. I was seventeen when I swapped out the skipping of injections and started purging.

I was eighteen when I let it completely consume me. Hiding my Diabulimia, Anorexia and Bulimia from my friends, my boyfriend and everyone surrounding was the loneliest time of my life, something I didn’t think I was going to get through.

I lied and lied, my family and doctors couldn’t do anything to stop me, I was troubled.

I got better, time and time again. Sometimes it would last a couple weeks, sometimes a couple hours. The point is I was trying, I tried to get better.

At one stage in my journey, I sat in a small room in the mental health ward of the hospital I was first diagnosed in, counting the tiles on the roof over and over, frustrated. Asking myself why I made the choice to do the things I was doing, why I couldn’t just stop. I knew I was going to regret it; I knew I was sick. But I would get out of the hospital and less than a month later I’d be back with the same issues, and even having my second heart attack at 21 years old didn’t scare me enough to stop.

But I was lucky; yes I had gotten sick and I had suffered complications but nothing too serious. Even when I had surgery after burning my leg and not feeling it because of a diabetes related issue, I still considered myself lucky because I kept my leg. Everything changed when I sat in a Los Angeles hospital on my own at 23 years old and had a surgeon tell me I was going to lose my foot. Thank the heavens it only ended up being two toes, but that was the first time I had damaged myself beyond repair. It was only to lose a bit of weight, it wasn’t meant to go this far, I was going to stop eventually. Everything was messed up.

Fourteen months later, I came into the hospital with a broken leg and no idea how it got that way. Doctors told me they often saw this in people living with Anorexia due to weakening bone density. I spent a long time in intensive care, trying to save the leg. I had a total of 20 surgeries on it, and I spent six months not being able to walk, terrified that I was going to have another amputation, which I knew mentally I couldn’t handle.

But when I got up and walked out of there with only scars and swelling, I knew I wouldn’t ever look back and I didn’t. I was good to myself, my diabetes was perfect, I was eating but it didn’t matter because the damage was already done. What I had done to myself ten years prior would never just disappear, I thought the worst of it was over though and for that I was grateful. This is when my friend told me that I’m protected, but I skimmed past it when he said it and just continued with life. Happy to be walking.

I was 25 years old when my kidney function dropped to a dangerously low percentage because of high blood sugars. They told me it wasn’t too bad yet so I would still be able to last about ten years before needing a transplant. But by December my function was so low that they started preparing me for dialysis. I was scared but mostly I was disappointed that I did this to myself. I was 26 when I woke up blind in one eye. The health professionals said it was either from my unmanaged diabetes after all those years, or my blood pressure sitting extremely high, at all times, because of my failing organs. But whatever it was, it happened and there wasn’t anything I could do to change it.

I’m hoping I’ll be 27 when I get my kidney/pancreas transplant, but I don’t know who I’ll be without diabetes; without having to come to the renal unit three days a week for dialysis like I have been now for almost six months. I’m hoping this surgery is my last for a while and with my new kidney and diabetes free life I can make some kind of difference.

I can’t ask my friend what he meant by me being “protected”, but I can tell you I have thought a lot about it, and this is what I think.

People have accidentally skipped one injection and died in their sleep. Woken up completely blind in both eyes. Stepped on a rock and lost their whole leg. Had high blood sugar for a week and never made it out of the hospital. But in my situation, for eleven years I intentionally did those things to myself and it hurt my body in ways I can’t tell you. But it also taught me more than anything or anyone else ever has.

Now I realise it wasn’t my fault, it was never a choice I was making, my actions were caused by mental illness, just like the diabetes wasn’t my choice. Going through this taught me to forgive myself.

I get to wake up every day and look out of one eye, step out of bed onto two legs, go to dialysis and sit connected to a machine that has given me the ability to stay alive without working organs, and I get to have a future. I get to make more memories, I get to watch my niece grow up. I get to be as close with my mum and sister as I was when I was first diagnosed and love them with everything I have inside me. I get another chance to make my life worthwhile.

All those times I thought I couldn’t, I couldn’t go on, I couldn’t get through something, I couldn’t survive. But I did, I got back up, I kept fighting, and I came out of it happier and stronger than I ever thought I would be.

I am protected because I now know that everything in life happens for a reason, good and bad. Everything is teaching you something. Things happen in divine timing and you have to believe it’s all leading you to exactly where you’re meant to be.

I believe that I survived for a reason, I think that my purpose might be sharing what I survived and making somebody else question what it is they’re doing today, that might affect them later on down the track. To inspire and motivate, show people that things do get better, you can get through it. When it comes to bettering yourself, trying is succeeding.

My biggest accomplishment is always standing back up.

My advice is to speak up, be honest. Talk to health professionals, your family, other people. My support came from social media groups; thousands of people living with the same issues and when I found them I no longer felt so alone in my situation.

Search for groups and organisations, listen to advice and tips and know that most processes are never easy, but the first step is often the hardest. I have an army of strangers who know my story, who care for me and every day that motivates me to keep going. I learnt that diabetes is a blessing, it is not something that will hurt you if you don’t let it, your life can still be so beautiful.

I know now that whatever happens I will prosper, be happy and be grateful. Nothing will stop me. That’s why I have the word “protected” tattooed down my back, I know I always have been and I know I always will be.

 

Get Support

If you need support for an eating disorder or body image concern, The Butterfly National Helpline is available 7 days a week, 8am-midnight (AEST).

1800 ED HOPE (1800 33 4673), via webchat or email support@butterfly.org.au

Further information

• More about eating disorders and diabetes (often called ‘Diabulimia’)
• Signs and symptoms of Diabulimia 
• NDSS Factsheet – Diabetes and disordered eating
• Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope, by Ann Goebel-Fabbri 
• Diabetes Australia
• Butterfly’s Let’s Talk podcast: Eating disorders and other health conditions – featuring Sienna’s story.