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“I definitely feel that emotional support should be a part of people's diabetes care."

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Khadija was born five weeks early (hence the name Khadija, which means early baby girl). Her pancreas overproduced insulin, which meant she was having a lot of hypos. At the time the only way the doctors could combat this was to remove 90% of her pancreas, which they did when she was just four months old.

Khadija Brown
Aged 25
Living with type 1 diabetes since 2004

Khadija's journey with diabetes 

  • 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.

"When I started at secondary school I was anxious to do it myself, but also embarrassed. So sometimes I wouldn’t take my insulin, especially during school hours."

I hadn’t really told my school friends much about my diabetes.

When I was 16 I went onto the Animas pump, which I’m still on. I trialled the Freestyle Libre in 2017, and last year I was offered it on prescription. It’s made a big difference to my life – before Flash I wasn’t noticing when I was going into hypo, but now I know what direction my blood sugars are going in.
 

Stress and support

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’m at the age where I would be going out, but at the same time it’s making sure I’m not going to end up in hospital.

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 sees various doctors that I don’t have a rapport with. They say things like, "This is high, what have you been doing? You need to make sure you do this". And I would think, "I really am trying".

Emotional wellbeing

"I think there needs to be emotional support available – especially for young people. Someone like a counsellor, who you can confide in."

I don’t think you can really speak to your consultant as they only care about the medical side of things, as opposed to your emotional wellbeing. 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 didn’t know there was emotional support available until I completed the feedback form at the children and young people’s clinic. Had I known about a service then I would’ve wanted to use it. When I was 16 I wasn’t really managing blood sugars very well, and I feel they could’ve hinted that an emotional support service was available to help me manage in a different way.

"In terms of the support I would like to see, I think something like a drop in service as part of the diabetes clinic would work well."

You would go and see your nurse, consultant and then have someone there you could pop in and chat to about your emotional wellbeing. 

In the past I haven’t always been able to get the emotional support I needed from family and friends. I feel that some family and friends would 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. 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.
 

Diabetes UK and me

The Diabetes UK forum and Facebook pages are good to find things out I wouldn’t get to know when in clinic, like handy tips on how to reduce hypos. It’s also nice to read other people’s stories and know I’m not alone. Social media forums give me confidence and I can get the information I would be too embarrassed to ask my doctor for.

Khadija features in our It’s Missing campaign, which aims to make emotional and mental health support a part of everyone’s diabetes care. 

Currently, not everyone is getting the emotional support they need. This has to change. If you agree, please join our campaign today.

 

 

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