Robert's story: giving a voice to daily life with diabetes

I'm an expert by experience in one of Diabetes UK's Diabetes Research Steering Groups (DRSGs) and the Diabetes Inclusion Community Engagement (DICE) group. 

I have been a member of DRSG1 (which focuses on causes of diabetes) for over two years. I have learned so much since being diagnosed with diabetes - especially about the different types of diabetes, and the need to develop preventative medicine and make life better for people living with diabetes. 

I am also part of DICE. I am really fortunate to have great access to diabetes care and support from my local team of consultants and practitioners. But I am aware that so many in the UK don't have the same. Being part of DICE allows us to reach out to different communities, especially those with language barriers, to share our knowledge and experiences. 

I feel really grateful that I can be part of Diabetes UK's volunteering team and can try to help others where possible, give a voice to day-to-day life with diabetes, and be part of change. I have also shared my diabetes diagnosis story in Diabetes UK's Balance magazine and been part of the charity's campaigns. 

My father passed away in October 2021 during COVID. This was already a stressful time in my life. I went for a routine eye test a few weeks after my dad passed away, and that started my diabetes journey. I was told I had to go straight to A&E and I was on the verge of diabetic ketoacidosis (DKA). 

I was initially diagnosed with type 2 diabetes. Then I was admitted back to A&E and told I have type 1 - all within a couple of weeks since my father's passing. 

My twin brother was living with type 2 diabetes, so I thought that it was strange that I was being diagnosed with type 1 diabetes at this time. Six months after I started on insulin, my twin brother tragically passed away. He'd been a missing person for three weeks, which was incredibly scary for me and my family. During that time, I had a lot of hypos. My healthcare team put me on metformin and linagliptin, type 2 diabetes medications. This treatment stabilised my blood sugars, and I've been using the medications ever since. 

I'm still not officially diagnosed. The consultant I saw most recently said I definitely have type 1 - but I'm type 1 'negative'. Or, I could be in the 'lean' type 2 diabetes category. 

My journey is still evolving. I am focusing on my health, walking between 10,000 and 20,000 steps a day and eating healthily. I feel that it is perhaps hard for others to understand the intensity of living with an uncertain diagnosis. 

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Reach out for support

If you are affected by the topics highlighted within this story or other stories on our website, you can access support from our helpline team on 0345 122 2399, Mon- Fri, 9am- 6pm, or email helpline@diabetes.org.uk.

You can join our free forum – to connect with others affected by diabetes (minimum age 13). For more information, see our forum FAQs.

For those aged 11-25 living with type 1 diabetes, check out our youth programme Together Type 1 for a supportive community of people who understand what it’s really like juggling the ups and downs of life with diabetes.