Sister Stories: Navigating Life, the struggles of growing up Asian with Type 1 Diabetes
Welcome to the third installment of our Sister Stories Series. This series explores unique stories, diving into the challenges Asian women have experienced, the triumphs they’ve celebrated, and the wisdom they’ve gained along the way. Get ready to be uplifted, enlightened, and inspired by the resilience and strength of our community!
In this instalment we hear from someone who was diagnosed with type 1 diabetes as a child, and now as her parent herself she is ready to share her story here with the AMBER community. If this story does resonate with you, do contact AMBER at support@ambercommunity.net and share your story too.
Silent Struggles: Surviving the Early Days of Undiagnosed Type 1 Diabetes
My journey with Type 1 diabetes began when I was just 11 years old. Before I was diagnosed, my health deteriorated quickly, and even basic tasks like eating and sleeping became incredibly difficult. For months, I kept my symptoms hidden, a habit I developed growing up in a busy household with overworked parents. To cope, I began taking small amounts of money from my parents to buy fizzy drinks from the local shop. I kept these hidden in my room because they helped alleviate my thirst and gave me enough energy to get through the day. At points when I was so drained, I started wearing my school uniform to bed, just to save what little energy I had in the mornings, this was another survival strategy.
After school, I would get to the local shop as fast as I could to buy more drinks, desperate for temporary relief. Reflecting on this now, it reminds me of addiction—the cravings, the single focus on immediate comfort, and the fleeting sense of relief. In some ways, undiagnosed diabetes and addiction share common ground in how they affect energy, behaviour, and the body’s response to imbalances. For me, the craving for drinks and sugar felt like a physical and emotional survival mechanism.
As my condition worsened, the changes in my body became harder to ignore. Over two weeks, I lost so much weight that I was misdiagnosed with anorexia. I was too weak to explain what was happening, responding to my GP’s questions with simple "yes" or "no" answers. By then, I was hypersensitive to light and sound and could only manage short, unsupported walks.
At school, I was determined to appear “normal,” but my efforts didn’t help. When classmates asked why I moved so slowly, I pretended not to care about school or being on time, hiding my struggles behind a rebellious attitude.
Hospital Walls and Heavy Words: The Early Struggles of Living with Type 1 Diabetes.
The memory of being admitted to the hospital is still vivid. I remember the flurry of activity as doctors and nurses surrounded me, inserting cannulas and running tests. Despite the fear, I felt a sense of relief knowing I was finally in a place where I could get the help I needed.
After my diagnosis, I overheard a comment that deeply affected me: “How will you get her married now?” Even at a young age, I understood the weight of those words. Growing up in an Asian household, societal expectations loomed large, and I quickly realised how my condition would be viewed through that lens.
Although I left the hospital with a plan to manage my diabetes, it wasn’t easy to stick to it. Over time, the habits I developed during my stay fell apart. My family didn’t fully understand the complexities of my condition, and I mistakenly believed that avoiding sweets and chocolates was enough. Managing diabetes, I came to learn, required a much more comprehensive approach to every aspect of my lifestyle.
As a teenager, balancing diabetes with a desire to fit in was particularly difficult. My condition wasn’t obvious to others, so I tried to act as though I was just like everyone else. This mindset made me downplay my diagnosis, ignoring the responsibilities of monitoring my blood sugar, taking insulin, and planning my meals.
Neglecting my condition took a toll. I often felt sick, weak, and exhausted, sometimes struggling to even get out of bed. My unstable health affected my mood, compounded by the natural hormone fluctuations of adolescence. It also disrupted my education, preventing me from engaging with my studies and missing out on key opportunities like my GCSEs. Watching my friends move forward while I remained unwell was isolating.
Raising Healthy Lives: Parenting Through My Diabetes Experience
Now, as a parent, I’m grateful that these experiences have shaped how I raise my children. My son recently completed his GCSEs and is applying to study chemical engineering at university, inspired by our journey with my diabetes. Seeing him thrive is a proud achievement, and I’ve always prioritised giving my children the foundation for a healthy life.
From an early age, I was intentional about their diets and habits. Even though my children are not diabetic, I wanted to instilled the importance of health and balance. My experiences have shown me how crucial it is for parents to create a supportive environment and to equip themselves with the knowledge to help their children.
For parents navigating Type 1 diabetes, my advice is simple: learn as much as you can and foster a home environment where health is a priority. There are countless resources available—articles, videos, podcasts, and forums, many of which can be accessed in multiple languages. By educating ourselves, we can provide the guidance and encouragement our children need to manage their condition with confidence.
As an AMBER member , I am proud to share my story for World Diabetes Day. Every child with diabetes deserves the chance to reach their full potential, and as parents, we have a vital role in making that happen. By supporting our children every step of the way, we empower them to face their challenges with resilience, strength, and hope.
Support Services:
Diabetes UK
Website: www.diabetes.org.uk
Offers a wide range of resources for families, including information about managing Type 1 diabetes, peer support, and events like Family Camps.
Helpline: 0345 123 2399
Local Groups: Connect with other families through local Diabetes UK support groups.
JDRF UK (Juvenile Diabetes Research Foundation)
Website: www.jdrf.org.uk
Focuses on Type 1 diabetes. Provides educational resources, fundraising events, and networking opportunities for parents and children.
Runs family days, workshops, and peer-support schemes.
NHS Diabetes Services
Check with your local NHS Trust for paediatric diabetes services. They often provide specialised nurses, dietitians, and clinics for families.
T1 Resources
Website: www.t1resources.uk
Curated by healthcare professionals, this site offers advice and resources, including apps and tech for managing Type 1 diabetes.
Contact
Website: www.contact.org.uk
A charity for families with disabled children, including those with long-term health conditions like diabetes. Offers advice and peer support.
Social Media Platforms and Groups - Facebook Groups:
Parents of Type 1 Diabetics UK - A private group for parents to share experiences and advice.
Type 1 Diabetes Support for Families UK - Offers support for families navigating diabetes care.
Instagram Accounts:
@JDRF_UK - Shares stories, tips, and updates on research and events.
@DiabetesUK - Provides insights and support for families and individuals with diabetes.
Diabetes Online Community (#DOC): Twitter and Instagram have active hashtags like #Type1Diabetes and #T1D where parents and children can connect globally.
YouTube Channels:
Diabetes UK regularly posts videos on managing Type 1 diabetes.
Personal vlogs by families sharing their journeys with diabetes can be a source of community and advice.
Peer Support Apps:
mySugr - A popular app to help children and families track blood sugar levels, food, and insulin. Offers fun gamification for kids.
Beyond Type 1 - A global diabetes app with a UK presence, offering community forums for kids and parents.
Carbs & Cals App - Helps families calculate carb content for better meal planning and diabetes management.