Khadija's story: Challenges of living with diabetes from a young age

• Had 90% of her pancreas removed when she was four months old
• Started insulin injections at the age of nine and often hid her diabetes from her school friends as she was anxious and embarrassed.
• Struggles with the unpredictability of the condition and how it affects her work and school life
• Has found support and advice by talking to others with diabetes on social media groups

My mum, who is now a qualified nurse, would always research anything to do with diabetes. She wanted to know more so she could help me. I was monitored in a diabetes clinic and had to check my blood glucose levels daily. I started on insulin at the age of nine. When I was little my mum would do all my insulin injections, as I was too afraid to do them.

I think it’s important for charities like Diabetes UK to develop stronger connections with different communities. The thing about people from minority ethnic backgrounds is that we can feel excluded from society. We have our own culture, which others may not understand. The differences also show up in diabetes healthcare. 

I always remember getting excited for Black History Month back in school, and it means a lot to me even now. I think it’s important for everyone to continue learning and being aware. Hopefully, that can eradicate ignorance.

Speaking about living with diabetes on social media has helped me to connect with Black people and people of ethnic minorities living with the condition. It’s been really eye-opening and inspiring after having grown up not knowing anyone like me.

The reason I continue to talk about diabetes on my platform is to show young Black people what is possible. 

Tech inequality

Inequality is everywhere. Some of the people who live with diabetes that I speak to on social media, for example, are having to fight for access to diabetes technology.

I was very lucky in that I’ve been using the Freestyle Libre since I was included on a trial in 2017. It’s made life so much better. Before, that, I wasn't' noticing when I was going into hypo, but now but now I know what direction my blood sugars are going in. I’ve got the app on my phone and can check my blood sugar on there. I don’t have to worry as much, and I think that should be available to everyone. 

I now have a law degree and a Masters in Human Rights Law, where I wrote my dissertation on the Windrush Scandal. My grandparents came to the UK from Jamaica in the 60s, so it resonated with me. It’s really opened my eyes. 

The medical teams that have looked after me have always been wonderful. While I don’t think I have been negatively impacted by racism in healthcare, I know it does go on. I’m lucky that my diabetes nurses have been so good. 

My diabetes has had a big impact on my work and study life. 

Stress gives me low blood sugars and then I have difficulty concentrating. When I was at university taking exams I would worry the alarm on my pump would go off, or if my blood sugars went too low then I would have to stop the exam.

In terms of support, I lean on my family. My mum and my cousins (who are the same age as me) have been around for a long time, so they understand what I’m going through.

One of the hardest things about living with diabetes is keeping it in control and the unpredictable nature of the condition. For example, if I have a cheat day (like having some chocolate), it’s then a case of making sure my blood sugars don’t go out of line. I also struggle to maintain a normal life and a social life – being able to go out is difficult.

"I often get the feeling that I’m failing."

There was a period of time where I had really high blood sugars and when I checked them and they weren’t going down, I felt like I wasn’t doing anything right. I would go to my clinic and they’d say my HbA1c was high and I’d feel like I hadn’t done the right thing, which would get me down. 

The clinic I go to is busy, so I don’t always see my consultant, and tend to see various doctors that I don’t have a rapport with.

In the past I haven’t always been able to get emotional support. Some people might assume that the reason behind a diabetic person not looking after themselves properly is because they are being lazy, rather than think that that person is emotionally detached from their condition, or requires emotional support.

I definitely think having a counsellor would help me. I’ve never asked my doctors or nurses for support. I’ve always felt embarrassed that they would look at me in a certain way if I said what I was going through.

I’d like to see something like a drop-in service as part of the diabetes clinic. You would go and see your nurse, consultant and then have someone there you could pop in and chat to about your emotional wellbeing. 

My family and friends know I’ve been living with diabetes for a long time and see me coping, so they don’t always realise how tough it is.