2 women share their stories and the challenges they face living with diabetes

Most of us know someone who has diabetes. 

In fact, 4.9 million have diabetes, that’s 1 in 14 people.* 

For people with diabetes, particularly type 1 diabetes, managing the glucose (sugar) in their blood becomes like walking a tightrope, with constant vigilance needed to carefully balance the numbers. 

What is diabetes? 

Diabetes is where either your body’s own immune system attacks the insulin cells (type 1), or when your body does not produce enough insulin or develops resistance to insulin (type 2). Both types mean that the glucose (broken down from your food), cannot get into the cells properly to be used up as energy and ends up building up in the blood.

Diabetes Types 1 and 2! What’s the difference?

There are two main types of diabetes, but both occur when the glucose (broken down from the food we eat) can’t get into the cells of the body properly to be used up as energy.

Instead, it ends up building up in the blood which can be dangerous.

Type 1: Your body’s own immune system attacks the insulin-making cells, so you can’t make insulin anymore. Type 1 affects about 8% of everyone with diabetes.

Type 2: Either your body doesn’t make enough insulin, or your insulin doesn’t work properly. Type 2 affects about 90% of those with diabetes.

The causes may be different but whichever type of diabetes you are diagnosed with will require appropriate management on a daily basis, as well as changes to your lifestyle.

If people with diabetes consistently have too much glucose in their blood, they’re at risk of serious long-term complications.

And if they overload with insulin, they’re at risk of slipping into a condition called hypoglycaemia, where their blood sugar levels drop too low. 

Managing diabetes 

People living with diabetes have to learn a whole new way of life and must become experts in their glucose levels.

Someone with type 2 diabetes might have to make changes to their lifestyle, breaking some habits they’ve had for decades. 

Some may be faced with a complication immediately after diagnosis as they may have had the condition years before diagnosis.

Most people with type 1 diabetes have to learn how to get their insulin right at every single meal. 

They have to be constantly on guard, adjusting it for exercise as well as when they’re feeling unwell, or even just because of the weather.

Getting this right all the time can be difficult, especially when compounded by the complex management of different therapies.

In 2019 the pharmaceutical company Sanofi commissioned a survey to understand the impact that diabetes has on peoples’ lives.**

Despite understanding the potential consequences, 41% of people with type 1 diabetes said they intentionally leave their blood sugar levels to ‘run high’ when they are planning to do physical exercise, with 38% stating that they do so before going to bed.

They ‘run high’ out of fear (77%) of experiencing or having to deal with a hypoglycaemic episode, known as a ‘hypo’ (62%).

Dr Thomas M Barber, Associate Professor and Consultant Endocrinologist, University of Warwick and University Hospitals Coventry and Warwickshire.

Fewer people with type 2 intentionally run their blood sugar levels high, with a quarter (25%) saying they intentionally leave their blood sugar levels to ‘run high’ when they are planning to do physical exercise or before going to bed.

32% of people with type 2 diabetes ‘run high’ because they are afraid of potentially experiencing a hypo, with 35% stating they do so as they do not want to have to worry about dealing with a hypo.

“Anxiety related to hypoglycaemia does exist and it is a real phenomenon,” says Dr Thomas M Barber, Associate Professor and Consultant Endocrinologist, University of Warwick and University Hospitals Coventry and Warwickshire. 

“It is clearly way up there when you look at patient fears. And one that is potentially very serious and ultimately could be fatal.”       

The mental toll of living with diabetes 

Living with diabetes is tough. It never stops and can be all consuming.

The responsibility for managing it, for the most part, falls on the person living with it, which can really take a toll on their mental health.

People with diabetes are twice as likely to suffer from depression, with a Diabetes UK survey revealing that around 40% of people with diabetes struggle with their psychological wellbeing, often because of the demands of diabetes.*** 

Khadija’s story: “I was often anxious and embarrassed and hid the diabetes from my friends.” 

Khadija says: “Diabetes is part of my life, something that is always with me, something that I cannot ignore.”

“My relationship with insulin began the moment I was born. At just four months, 90% of my pancreas was removed, as it started to overproduce insulin.

“At nine, I was diagnosed with type 1 diabetes, as this time, the insulin produced by my body was just not enough for me to grow and function.

“Starting insulin injections at a young age wasn’t easy, I was often anxious and embarrassed and hid the diabetes from my friends. However, as I started to grow, I learnt more about my condition, how to manage my own clinical appointments, how to use the right technology and take control of my condition.

“Diabetes is part of my life, something that is always with me, something that I cannot ignore.

“Even a little bit of insulin can shoot my blood sugar right down and then add in the stress of daily life, it is quite difficult finding that balance and to stay positive all the time.

“With every single decision, either what to eat or what to do, affecting my blood sugar, it was really hard and difficult to be positive all the time.

“When you are feeling down, or having something known as ‘diabetes burnout’, having support in place can prevent this happening so often.

“Amidst the concerns and uncertainty of the COVID-19 pandemic, the lockdown has provided me the opportunity to slow down, to get to know my body more and see how I can manage my condition better.

“In the last two years, I took to social media and started writing about my anxiety, my highs, my lows, my worries, and my emotions living with diabetes. This allowed me to make strong connections with others just like me, who now support me with mental health and empower me to take each day as it comes.

“Whenever I tell somebody new that I have diabetes, they’re like, ‘Oh, I’m sorry to hear that.’ I can understand they’re being sympathetic, but I’d say it’s not all bad, as it has helped me to be healthier.”

The impact of the Covid-19 pandemic on those living with diabetes

The advent of Covid-19 created practical and emotional difficulties for those living with diabetes 

The arrival of Covid-19 was difficult to say the least.

Not only did lockdown create barriers to receiving their usual treatment, but there was understandably a fear about the potential effects on their health should they come into contact with Covid-19.

“Early on in the lockdown there was a lot of misinformation for people with various conditions. Patients were confused and didn’t know what to do,” said Dr Thomas M Barber. “Without having regular interaction with your healthcare professionals and not knowing what’s happening with the diabetes clinic, it has been incredibly difficult and stressful for many people.”

The lockdown led to concerns about getting the right food, insulin, accessing diabetes services and uncertainties around receiving care at home. 

Healthcare professionals began to use remote technology to stay in touch with their patients during the pandemic 

As the months went on and with more information in hand, healthcare professionals started to reach out to their patients in novel ways, making use of remote technologies. There was a focus on improved and optimised glycaemic control, in the hope that this strategy will reduce the likelihood of future infection with Covid-19 and the severity of any such infection.

People are slowly becoming more aware of diabetes and its implications as well as the huge mental burden that comes with it. But Dr Thomas M Barber says there is still a way to go: “What is needed is access to diabetes technologies, structured education and making sure that holistic care is considered, not just a focus on the numbers.

“It is, of course, difficult to generalise, but I think if you can achieve glycaemic stability in a patient, then effectively you’re giving them their life back.”

People with diabetes are twice as likely to suffer from depression, with a Diabetes UK survey revealing that around 40% of people with diabetes struggle with their psychological wellbeing

In addition to this, the Sanofi survey highlighted that 71% of the people questioned with type 1 diabetes, and 67% of people questioned with type 2 diabetes, can feel a bit depressed about the long-term health impact of their condition.**

“One of the things I’ve learnt over the years is a key contributor to diabetes distress is actually loss of control or perceived loss of control,” says Dr Thomas M Barber.

“For example, when you take your car for an MOT or to get it serviced, it’s probably obvious to the mechanic what to do and what is wrong, but if you don’t know a thing about engines, you won’t have a clue. You wouldn’t know where to start. So, I think that sometimes it’s worth reminding ourselves that what might seem obvious to us as healthcare professionals, isn’t necessarily as clear to the person with diabetes we are talking to.”

Nicki’s story: “Diabetes has had a massive impact on my life. I’ve experienced lows and found it hard to do my job.” 

Nicki says: “I have experienced quite a bit of stigma in association to my diabetes as I believe people wrongly type-cast a particular profile of a person with type 2 diabetes.”

“I had no prior symptoms before I was diagnosed with type 2 diabetes back in 2015. I was a fit and healthy mother of three, with an active job and a dog that kept me on my feet all the time.

“I’d been feeling a bit low and was experiencing tiredness and weakness but had none of the classic symptoms. So, when I was given this diagnosis at the age of 46, I felt shocked, worried, and frustrated. I couldn’t understand it, and back then it felt like somebody had pressed the pause button on my life.

“I have experienced quite a bit of stigma in association to my diabetes as I believe people wrongly type-cast a particular profile of a person with type 2 diabetes.

“For example, I remember once seeing a healthcare provider who assumed I must have lost a lot of weight, which I had to explain I hadn’t – I’ve always been a healthy weight and very active. Some people even question whether I really do have type 2 diabetes as they think you’ve got to be obese and have a really unhealthy lifestyle to have it.

“Diabetes has had a massive impact on my life. I’ve experienced lows, found it hard to do my job, and with the constant changes in my medication, my blood sugar levels would drop overnight making me feel really horrible the next day.

“It has been challenging to have to adapt to a constant awareness of how I feel, forcing me to question every ‘wobble’, am I having a hypo, or am I too high?

“My Diabetes Nurse has been great and a real support. She will ask how I am and she’s not just referring to my levels but to me. I think it is so important that people with diabetes have access to emotional support wherever possible, so care can be centred around not just treating it as a condition but treating the emotional background to it as well.

“Diabetes has not only affected me, but also my family. My 15-year-old daughter has had to learn how to help whenever I have hypoglycaemia. She feels responsible for me and carries a lot of burden, which is hard for a teenager.

“When the pandemic set-in, I found my anxiety and worry levels increasing day by day. Having type 2 diabetes, you are more prone to severe symptoms and complications, when affected by any virus. So being a key worker in schools, I feel extremely nervous about going in every day.

“I think there needs to be much more awareness about the different types of diabetes and knowledge that not everyone fits under the same umbrella.” 

For more information on diabetes and support services visit diabetes.org.uk 

This article is written and funded by Sanofi. MAT-GB-2101320 V1.0 May 2021

*Diabetes UK. Available at https://www.diabetes.org.uk/professionals/position-statements-reports/statistics. Accessed May 2021

**Sanofi Data on File. Self-management of blood glucose levels in Type 1 & Type 2 diabetes patients survey, 2019. MAT-GB-2002921

***Diabetes UK. Available at: https://www.diabetes.org.uk/guide-to-diabetes/emotions/depression Accessed May 2021