Living with undiagnosed Autism Spectrum Disorder and mental health issues led Lucinda to binge eat. She was diagnosed with Type 2 diabetes a year after her dad’s same diagnosis, and by supporting each other they've been changing their approach to food together.
Has lived with Type 2 diabetes since 2015
“My diabetes diagnosis made it a little easier to understand my relationship with food, but it still felt like there were still key pieces of the puzzle missing. Later being diagnosed with Autism Spectrum Disorder really helped me gain a better understanding of why I eat the way I do.”
Lucinda’s journey with diabetes
- Battled with depression and anxiety due to undiagnosed Autism Spectrum Disorder (ASD), which also led to her developing binge eating disorder.
- Was diagnosed with Polycystic Ovarian Syndrome in 2014, putting her at increased risk of developing Type 2 diabetes.
- Was diagnosed with Type 2 diabetes a year later.
- Says that diagnoses of Type 2 diabetes and Autism Spectrum Disorder have helped her to understand her disordered relationship with food.
- Is taking steps to address her eating disorder and better manage her diabetes.
I was diagnosed with Type 2 diabetes in 2015 when I was seeking mental health support for my binge eating disorder. I’d been sent to the hospital’s bariatrics unit, hoping that I could speak to a psychologist there, but ended up feeling pressured to consider surgery.
I wasn’t keen as I didn't think it would fix my relationship with food, but part of the process was having a blood test.
"After that, I found out I was indeed diabetic and was being put on to metformin. I was given no other information than that. I was scared, confused, and had no idea what to do."
Friends and family
My dad had been diagnosed with Type 2 diabetes the year before, so he and my step-mum talked me through it all, taught me what I needed to know, such as when to get my HbA1c, and dealt with the emotional fallout of my diagnosis.
Looking back, I had some symptoms, such as excessive thirst and dizzy spells, but I've always liked drinking water and have suffered from dizzy spells all my life.
My understanding of diabetes back then was next to nothing apart from watching my dad reduce his carb intake after his own diagnosis.
"My dad and step-mum have supported me so much since I was diagnosed with diabetes. We regularly talk about it and share books on the subject."
I have ASD and dyslexia, which means I struggle to retain the information that I need, such as remembering what levels of sugar I should be checking for on food items, and they're always more than happy to remind me what to look for, and go around the supermarket with me again. My sister is always happy to help me try new recipes and never judges my limited palate – which is a feature of my ASD – or how much I struggle with portion size.
Because my dad has diabetes, we talk about our increasing understanding of how we approach food, but also things like the best blood glucose meters, where to get the cheapest testing strips, any good diabetic-friendly new food we find. We always offer each other support, although I feel he supports me far more than I support him.
Diet, nutrition and active living
My unhealthy habits with food came from years of trauma, depression, anxiety, suppression, grief, self-comfort, self-hatred, and undiagnosed disabilities. It’s no surprise those developed into an eating disorder and consequently diabetes, and it’s also no surprise that it’s something I’m not going to get over quickly.
When it comes to my eating disorder, it can be really hard on the bad days, or weeks, or even months, to say to myself, ‘It's okay. This is what you needed right now. I forgive you.’ But when I can say that I find I'm more likely to naturally go back to forming healthier habits without guilt dragging me down because I feel like I’ve failed.
"My diabetes diagnosis made it a little easier to understand my relationship with food and how that impacted on my diet, but it still felt like there were still key pieces of the puzzle missing. Being diagnosed with Autism Spectrum Disorder (ASD) in 2018 really helped me gain a better understanding of why I eat the way I do."
I now have more clarity when approaching food in a way that’s conscious of my diabetes, but also works with my ASD. It's still early days though, and I still often find myself overwhelmed as I try to figure it all out.
I used to be incredibly active. I did swimming, Tae Kwon Do, tennis, running. I’d go to the gym five days a week. But in 2008, I got glandular fever just before I started university. It made me very weak and my university course was so intense that I didn't have the time or energy to really get back into exercise the way I had done before. Weight started to pile on and I began to suffer from more and more mental health issues.
"In 2013, just after scraping through my Master's degree, I had a nervous breakdown and could barely leave my home. I couldn't work and finances became very, very tight so doing something like joining the gym wasn't an option for me."
People kept telling me that walking was free, but most days I couldn't leave my home, or if I went out I would become what I now recognise as overstimulated and would have a meltdown. I still struggle to leave my home and my financial situation hasn't changed, so at the moment I'm stuck and it doesn't feel good.
When my mental health issues were at their worst, it was very difficult to find consistent work I could mainly do from home. Fortunately, I managed to get some writing work and am just finishing my training as a counsellor so I can work with clients over Skype.
"I'm really hoping that getting to a point where I can consistently support myself despite being disabled is going to be a huge step forward for me that will have a positive impact on my eating."
It's hard to care for yourself when all you can do all day every day is worry about money and have to cut most enjoyable things out of your life because you can't afford them.
Really having to look at my relationship with food and break down where so much of the negativity around it all has come from, so I can start breaking the cycle. It's a frustratingly slow process as it's been decades in the making, but with my families help, the psychologist I'm seeing, and studying ‘intuitive eating’, I can see that I'm making progress.
What has helped me most
Ironically, I’ve found that having diabetes means I’m able to say no to certain foods and people don’t try to push me into having them anymore. As soon as I say I’m diabetic, people stop saying, ‘Oh go on, just a small piece!’
"If I’m struggling, usually the best thing for me to do is to talk to either my dad, step mum, or sister. They're all incredibly supportive."
Sometimes it helps me to read some books on intuitive eating, or listen to a podcast on it, like LoveFood. That makes me feel like I’m taking a proactive approach to my problems.
What I wish I knew before
I wish the higher risk of diabetes had been discussed with me when I was diagnosed with polycystic ovary syndrome (PCOS), instead of just being told about IVF options, as my weight had been steadily increasing for a while by then.
I had no idea having PCOS made my risk of developing Type 2 diabetes much higher until I looked it up for myself after my diabetes diagnosis. Given that I was steadily increasing in weight and had PCOS, along with my dad having Type 2 diabetes, I don't know why this conversation never came up with any of the doctors I saw.
"I realise that I should have perhaps joined the dots myself, but I was never told I was pre-diabetic. Also, my dad only developed Type 2 diabetes in his late 50s after being overweight all his life, whereas I hadn't been. Diabetes just never occurred to me."
Diabetes UK and me
I’ve found the recipes on the Diabetes UK website, and the fact that you can download free recipe books, really helpful. I go through them with my sister and find recipes that we can try together.