Growing up in a big household, every day was a feast for Shivali Modha. Her identity was bound up with her love of food, until a struggle with diabetes gave her a new appetite for life.
Living with Type 2 diabetes since 2008, now in remission
"For years I carried on, battling with food, battling with life, being diabetic, working full-time."
Shivali's journey with diabetes:
- Was in the early stages of pregnancy when diagnosed with Type 2 diabetes, aged 26, in 2008
- Suffered a miscarriage shortly after her diagnosis
- Spent years battling with feelings of shame and stigma associated with diabetes as a South Asian woman, combined with unhealthy eating habits and a lack of physical activity
- Gradually increased her diabetes medication, leading to unpleasant side-effects
- Started running and joined Slimming World, eventually losing 5.5 stone
- Was told in September 2018 that her diabetes is now in remission
- Now wants to help others in a similar situation to face up to their condition and adopt healthy lifestyle changes
Diagnosis was a real low point. I had just found out I was pregnant and was really excited.
At a routine check-up at eight weeks, the nurse did a pin-prick test of my blood and my sugars were 19mmol/l. My dad, Harish, had Type 2 diabetes, so I knew that was high. I was referred to Barnet General Hospital and saw a doctor who specialised in diabetic pregnancies. I was put on Metformin and insulin injections straight away. It was a huge shock.
Emotionally, I was broken. I thought life was over.
Things got worse when I suffered a miscarriage at 12 weeks. The day we announced my pregnancy to the world was the day I lost my baby. I conceived again within six months, but was terrified of having another miscarriage the whole time. I spent a lot of time hungry in my pregnancy, because I was so scared to eat. I was petrified to eat anything because it would make my blood sugars soar.
In my culture, there’s this idea that if you are sick, disabled or impaired in some way, then it’s your fault. So, you’re under pressure to deal with it yourself, quietly, behind closed doors. If you talk about your health problems, it would be shameful for your family for everyone to know and to pity you.
So for years I carried on, battling with food, battling with life, being diabetic, working full-time.
Friends and family
When I was diagnosed with diabetes, I only told my immediate family – my husband, sisters, parents and in-laws – about my condition.
My dad’s brothers, who I was really close to and who were also diabetic, would come to our house and I’d look after them, but they didn’t know I was also affected.
I isolated myself to protect my sanity, because telling people would have meant explaining that while I’d thought ‘big was beautiful,’ maybe everyone was right. Maybe it was my fault and it was all because of my overindulgence.
Diabetes impacted my marriage too. I completely lost my self-esteem and any feelings of attractiveness. Everything became so medicinal - the injecting, the hypos. My husband was my carer and it did not feel like a sexual or romantic relationship. Diabetes became the third person in our relationship.
When I was growing up, my parents ran a post office, and my siblings and I didn’t ever go out of the house. There was no physical activity. There were no ballet or gymnastics classes. Mum didn’t drive, so we’d go to school and come back. Eating was the highlight of the day.
At school and college, I was always the ‘fat girl’. But I was also the fun girl. People loved spending time with me. I was huge, but had no problem finding friends or romantic interests.. Life was great. I didn’t feel any need to lose weight.
My auntie, Yogini, whose father had diabetes (my grandfather), used to do 5k and 10k runs to raise money for Diabetes UK and many other charities. She asked if I’d like to join her. She’d encourage me to be active and invite me out for runs, but I’d only do it occasionally. I didn’t really like running, but then three years ago, my niece was badly burnt by a cup of tea. I was so angry about it, I started running and I didn’t stop.
My weight went down to 11 stone and my blood sugar control was good. Then, in 2017, I broke my toe and couldn’t run. I began to put weight back on.
This time, when I got to 12 stone, my body objected and I needed to start taking insulin again. Within months I was on Bydureon (a weekly injectable medication for Type 2 diabetes), and maximum oral medication including Metformin.
The Bydureon injections controlled my blood sugars, but they hurt and made me sick. I had welts on my tummy that were incredibly sore.
At that time my father-in-law, Shanker, decided to lose weight to raise money for charity. I decided I wanted to join him. I knew I couldn’t run, but I thought if I could improve my diet, I could possibly shift a little weight.
Diet and nutrition
For years, I flitted between following diets by WeightWatchers, which I did as a teenager, and Slimming World, but I just couldn’t lose weight. I’d hear people say they’d followed the Slimming World diet and their sugars had got better or they’d put their diabetes into remission and I’d think, ‘really?!’ I was convinced diabetes was not that easy to manage or beat. I thought it might work for someone who’d just been diagnosed, but not for someone like me, who’d had diabetes for 10 years. But lo and behold, it did.
I adopted the basic rule of having half a plate of salad, a quarter plate of protein and a quarter plate of complex carbs at every meal.
By eating the right foods and losing weight, I have reversed my diabetes.
You can cook some of my healthy recipes, these helped me discover new ways to prepare my favourite foods, such as:
My biggest challenge has been thinking about my daughters and how diabetes might affect them. I never want this for them, not the stigma and not the diabetes. But I have to be practical and prepare them, just in case diabetes comes into their lives in the future. Teaching them and guiding them through my journey and being honest and transparent with them hasn’t always been easy. Children always ask questions – and expect answers, so I’ve had to educate myself before I can them. They challenge your perceptions and the hope for a bright future for them, makes me want to persevere and try harder to improve my own prognosis, and health.
What has helped me most?
I used to read about diabetes, but I didn’t have the energy to reach out to talk to anyone. I felt ashamed of my condition.
When my diabetes was bad, I told my mum, Daxa, that I wanted to tell my wider family that I was really ill. She tried to discourage me, because she didn’t want people to pity us.
That was the point when I realised it was important not to suffer in silence any longer. If you have diabetes, you have to talk about it. If you’re not talking about it, nothing's changing… not the outcomes and not the mentality.
It doesn’t matter what culture you’re from, or what gender you are. If you cannot accept you have a medical condition, you cannot deal with it. Being more open means a lot to me and I feel strongly about it.
Losing weight and putting my diabetes into remission gave me a new confidence to speak out about my condition. With any other condition or illness, there is sympathy and people are supportive. I wish the same could be said for diabetes, that there was more compassion and less blame.
In 2018, I wrote a blog about my journey to remission and afterwards, hundreds of people messaged me, thanking me for telling them how to eat healthier, and encouraging them helped them to make similar changes
Despite everything my family have always been my go-to people. They have lifted me from the ashes.
Now, I have a renewed joy for living, for food. All the things I’d given up slowly.
The NHS BMI chart is a really good tool. It takes into account your ethnicity and ideal weight for protecting yourself against diabetes. I also use apps like MySugr, which is great for monitoring and recording your meals and blood sugar readings. When I’m exercising, I use Runkeeper to track my times, distances and calories burned and 7 Min Workout.
What I wished I knew when I was first diagnosed?
If you have Type 2 diabetes, if it’s in your family, take caution, take care and be proactive about it. If you have lifestyle-related diabetes, you can do something about it.
“Putting my diabetes in remission required a massive lifestyle and mindset change. I had to remind myself that I mattered, that my health mattered, that my body mattered.”