Causes of Loneliness in T1D

Why Do We Feel Alone?

Managing T1D is tough. For those of us who are T1D, specific factors can contribute to our loneliness. For some, it’s the social stigma of living with our chronic illness.

For many, our daily regime can be isolating. It needs care and attention day in day out:

1.     Monitoring our blood sugar levels
2.     Taking insulin
3.     Having to constantly remember to adjust our lifestyle choices.

All of which can take a huge emotional toll on us; an emotional isolation often made worse by a lack of social support or proper healthcare.

Finally, there’s an emotional burden that we can’t share - or those who aren’t T1D just can’t easily understand: many of us are grateful for support from friends and family but we don’t want to be a burden, a bother or an inconvenience. This drives us to distance ourselves from those closest to us, leading to increased loneliness.

T1D: An Isolating Diagnosis

Loneliness can often be linked to a significant (even shocking) change in circumstances. A diagnosis of T1D clearly counts as such a change.

We know from personal experience just how isolating it can be getting the diagnosis. Everything we thought we knew about our body is changed. There’s a super-steep learning curve as we have to quickly learn how to manage our condition. Sadly, sometimes the support isn’t there, leaving us to navigate it alone. We’re suddenly plunged into a new reality of continuous self-management: relentless blood checks, constant carbohydrate counting, insulin injections, and learning to use insulin pumps and CGMs. Plus, in the early days, we have to be vigilant 24/7, when everyone else can just carry on as before – which can feel so isolating.

Widening the empathy gap, our family, friends and colleagues probably have no idea how complex managing T1D is and how much mental energy is required. Or the gravity of it, for example suddenly having to drop everything (and everyone) to check our blood sugar. It’s an emotional burden which can – in extreme cases – lead to diabetes burnout. (Diabetes burnout is the term given to when the mental energy required to manage our T1D becomes overwhelming.) It’s common to feel that our friends and family don’t appreciate what a toll T1D is taking on us mentally. Such feelings distance us even further from them.

Unlike other conditions, there are no ‘time outs’ or days off. This is it. Every day can feel like yet another test as we adjust to the new reality of our body, with its unique needs and limitations. Many (quite naturally) grieve our pre-T1D body. And many of us feel frustrated, “other”, “different” … and lonely. Loneliness can be a vicious circle: being lonely can make us long for human contact but this state of mind makes forming meaningful connections more difficult.

Physical Isolation Due to Health Risks with T1D

There are many potential health complications associated with diabetes. Your healthcare team will help you navigate them. But the reality is that we are more vulnerable as a result of T1D and do face a lifetime of uncertainty and healthcare appointments. 

Let’s be frank: this is a stressful prospect and, for many of us, it will feel like a lonely one.

It means we have to be stricter regarding prevention – often physically isolating ourselves: avoiding some social circumstances, isolating from social networks and interactions – and everything in between. If you’re naturally cautious, you may self-impose isolation for lower risks, increasing your loneliness further.

When we become emotionally exhausted, many of us naturally react by withdrawing from social activities and interaction, relationships, appointments - even healthcare.

Navigating a World Where People Mix Up T1D and T2D

T1D is substantially rarer than Type 2. This means that you’re less likely to know other people who are T1D. Many of the online resources cater for Type 2, so don’t provide the support you need. This can be frustrating and alienating. 

T1D is an autoimmune disorder unrelated to lifestyle factors. But if you’re not living it, it’s easy to confuse it with Type 2. This can lead to being judged or blamed: you’re paying for the poor lifestyle choices, which can lead to Type 2. We’ve had people telling us to try natural remedies or just eat less sugar. Fear of this stigma, being misunderstood or judged, can prevent us from being open about our T1D. Not being able to be freely open increases feelings of isolation.

Despite all their knowledge and training, many healthcare professionals unfortunately don’t understand the unique challenges we face with T1D, or just how mentally or emotionally draining it is. This means that:

1. Stereotypes are perpetuated and T1D is confused with Type 2 Diabetes.
2. Assumptions are made about what causes T1D, so advice/support is not useful – or worse, inappropriate. An example: we’ve heard of healthcare professionals offering dietary or exercise advice because they’ve confused it with Type 2 Diabetes.

We rely on the people providing our healthcare to understand what we’re going through, including the stress of constant monitoring, adjusting insulin and managing blood sugar swings. If they don’t, we feel disappointed or misunderstood or unfairly judged or dismissed … or all of the above.

More worrying is if their confusion prevents us from getting the insulin therapy we need. Even here at Type One Style, we’ve had our Insulin prescriptions cancelled by a new pharmacist that didn’t understand the difference between T1D and T2D – that was very scary.

One solution is for us to research and find specialists whose expertise includes treating patients managing T1D; and – where the opportunity arises - help educate/raise awareness within the healthcare community.

Support and Strategies for Overcoming Loneliness

Can the Diabetes Community Help Alleviate Loneliness?

1. Creating a Supportive Culture

   We can all be part of the solution! We can help set up, or actively contribute to local ‘in person’ T1D support groups and networks, or online groups or forums. However isolated we may be feeling, in these spaces we know that we belong and that we are understood. Above all, we don’t feel so isolated. We can ensure that these are welcoming to new members, helpful and easily accessible to find and connect.

   These groups offer a ‘triple benefit’. Above all, they offer a safe space for anyone to share their experience of loneliness with others who understand exactly what we are going through, whether it’s managing new complications or helping a partner appreciate our new normal. For some, it’s a respite from misunderstandings (and misplaced judgement) around T1D.

   In these groups, everyone understands our daily reality of living with T1D. It’s a great opportunity to share strategies and tips, support anyone who needs a little extra help, and celebrate each other’s breakthroughs and little wins. This emotional support is an invaluable tool for those battling loneliness. Many of us benefitted from connecting with T1D ‘mentors’ through groups like these to help us through the early days and trickier phases.

   As well as helping us make meaningful, loneliness-busting social connections, these networks also inspire advocacy both at local and national level. It’s really important that we campaign on T1D-specific issues and raise awareness of T1D ourselves. Together, we are empowered, and raise awareness of what T1D means and reduce common misunderstandings. Finally, they often provide access to educational tools and resources which help us get to grips with T1D ourselves.

   There are some excellent advocacy forums offering support and resources. Here are a couple which may be useful: 

   Breakthrough T1D (previously the Juvenile Diabetes Research Foundation)

   Beyond Type 1
   
   
   

2. T1D Education, Education, Education!
   The best way to increase empathy, and bust myths and social stigmas around T1D, is by raising awareness. 
   •       Public education campaigns informing people about the differences between T1D and Type 2, and showcasing the challenges of managing T1D.
   •       Target schools, social spaces and organisations, and workspaces.
   •       Ensure employers and teachers are better informed about T1D and diabetes management.

   The better informed the wider public are, the less isolated and more supported we’ll feel. We’ll face fewer judgemental comments, be less stigmatised and get less unsolicited misguided advice (eg about food choices).

3. Better, more open communication in relationships 

   Loneliness can often result from being less open with those you are closest to about your feelings. Try opening up more to your family, friends and/or partner about how you’re feeling. Open communication can often be key to feeling less isolated.
   
   Need help navigating the social challenges of T1D? Read our blog on How T1D Shapes Social Life: Challenges and Opportunities for advice on balancing relationships while managing your condition.

   Once you can see how those closest to you can truly support you, you’ll be more comfortable sharing your concerns about T1D. In educating those around you, you’ll feel less lonely. Maybe consider family/relationship therapy as a way of creating the space for more open conversations.

4. Increased Mental Health support

   Access to mental health services is essential. Many healthcare providers take a multidisciplinary approach to T1D care, treating both our bodies and our minds. Mental health professionals (psychotherapists or psychologists) specialising in diabetes or chronic illness are frequently included in your mental health team. They will provide you with support regarding the emotional aspects of managing T1D. This has been found to reduce feelings of emotional distress, as well as loneliness.

   If there's not a psychologist on your diabetes team, you can get support locally.

   Ask your GP about what's available or refer yourself (if you can). Alternatively, search for support in your area: Find an NHS talking therapies service

Looking to explore the world of online communities for T1Ds? Check out our Guide to Online Communities for T1Ds: Find Support and Thrive for tips on connecting with people who understand exactly what you're going through.

Diabetes technology is revolutionising how we manage T1D. Continuous glucose monitors (CGMs), like the Dexcom One, and insulin pumps like Omnipod, reduce the burden of diabetes management.

It’s therefore easier to be more social and active. There are fewer interruptions to check our blood sugar checks or inject insulin. All of which means less mental energy spent on managing it – and less isolation.

Smartphone apps and online platforms help us share our data in real time with our healthcare team or our personal support network. The mere act of sharing this data makes us feel more connected and less alone.

6. Finding Support in the Diabetes Online Community

T1D communities are proving great at helping us overcome – or avoid – loneliness. Social media groups, online forums, and specialised apps empower us to connect, share our experiences, and swap advice with other people managing T1D all around the world. 

If someone’s feeling isolated or overwhelmed, then these groups could be sources of really useful tips for you. Reassuring support in a safe non-judgemental space can not only reduce your emotional burden - they can also lead to lasting friendships and networks.

Here are some useful platforms and communities where you can connect for advice, emotional support, and shared experiences:

Facebook groups

Many Facebook groups are dedicated to T1D and provide a space for us to ask questions, share experiences, and receive support:

1. Type 1 Diabetes Support
2. Beyond Type 1
3. T1D Athletes
4. Beyond Type 1: Global online community with website, active social media channels and an app, enabling you to connect and chat. There are also articles, resources, and personal stories.
5. Diabetes Daily: Online forum and blog site for T1D and Type 2. There’s a forum for asking questions and getting advice.
6. Tudiabetes.org: Part of Diabetes Hands Foundation. An online community for T1D and Type 2 with a forum for asking questions and discussing diabetes management.
7. Reddit – r/diabetes and r/type1diabetes: active and supportive communities hosted by Reddit for sharing advice.
8. Children with Diabetes (CWD): Forums and online communities for families and caregivers of children who are T1D. The focus is to help support children, parents, and teens managing diabetes.

Support might be closer than you think…

Benefits of Local Type 1 Community Groups

Local T1D community groups offer a wide range of benefits, such as providing emotional support, practical knowledge about T1D management, and a sense of community - all of which help us lead healthier, more connected, less isolated lives.

Meeting up with other people who innately understand the emotional aspects of living with T1D, is often a huge release. It’s an opportunity to share your concerns in a truly supportive environment and can help reduce stress you may be feeling.

Diabetes UK has regular in person/face-to-face meet-ups. Ask your T1D healthcare team if they know of any local groups, or search here: Find a Diabetes UK support group near you

Find local T1D peer support and make local T1D connections

You’ll meet other people experiencing the same T1D journey as you. By sharing your challenges (and solutions) you’ll feel less isolated. These connections can often develop into a network which will support you through rougher times and share your triumphs and wins in the better times.

They often organise social events or fitness classes, where you can have fun and be healthier – and not have to explain T1D to others! Local groups are also great for local campaigning or awareness raising.

Sharing local T1D tips and advice

Local groups can help you access local services, educational resources and solutions, helping you find ways to improve your T1D care. They often host events on topics which will be important and relevant – including dealing with loneliness, and the latest improvements in T1D care.

Local support for your family or caregiver

Local T1D groups are often also a good source of support, reassurance and guidance for your family and/or caregiver.

How can Diabetes UK help us overcome loneliness?

Diabetes UK supports us to effectively manage T1D by providing information, advice and peer support. Their services are also available to our family members, friends and carers so they can support us.

Face-to-face support groups

Diabetes UK has regular meet-ups.

Find a Diabetes UK support group near you

It's also worth asking your diabetes team if they know of any local groups.

Diabetes helpline

The Diabetes UK Helpline is the only dedicated diabetes helpline in the UK. Staffed by trained advisors with counselling skills, it helps with any diabetes related question or problem about day-to-day T1D management by phone or by email.

1. Call: 0345 123 2399 Monday to Friday, 9am to 6pm
2. Email: helpline@diabetes.org.uk

Diabetes UK also provides opportunities to meet up and contact other people managing T1D in more than 300 local diabetes groups across the UK.

They also run a programme of support events for T1d children and their families to get together, share experiences and receive advice from volunteer healthcare professionals.

 For more information, please follow these links:

• Diabetes UK
• Helpline
• Advocacy service
• Local diabetes support groups
• Care events

Personal Stories and Real-Life Experiences 

1. Alison* - Lonely despite community support

Health coach and T1D campaigner, Alison, was diagnosed as a child. She remembers feeling different from her friends, especially during sleepovers and events. She would have to check her blood sugar, while all her friends were carefree, which made her feel isolated. Her family were supportive family, but Alison felt a particular type of loneliness, because no one understood the burden of managing T1D every single day. She felt like she was fighting her battle alone. Alison joined online diabetes communities, but even then, the day-to-day management of her condition could feel isolating. Despite the growing sense of community, struggles with blood sugar fluctuations, burnout, the emotional toll still made her feel lonely at times. 

2. David* - Loneliness managing diabetes at work

Diabetes campaigner and author, David, has written about his struggles with T1D in his professional life. One of the most isolating parts of diabetes was managing it in the workplace. He felt uncomfortable having to check his blood sugar in front of colleagues or excusing himself to deal with low or high blood sugars during meetings. Self-consciousness led to emotional isolation, even though he worked in diabetes campaigns. David found diabetes management a personal burden sometimes made him feel very alone. 

3. Audrey* – The loneliness of T1D kids

Audrey’s daughter has T1D. Audrey describes the feelings of loneliness her daughter experienced. After diagnosis, her daughter struggled with feeling different from other kids at school. She felt excluded from activities like birthday parties, where she couldn’t eat the same food as her friends. While other kids ate pizza or cake, Audrey’s daughter would have to sit out, which led to her feeling left out and isolated. She also felt a unique loneliness when it came to managing her diabetes at school. Teachers and peers didn’t fully understand the complexity of her condition, and while the school was supportive, her daughter often felt like no one truly "got it." This left her daughter feeling alone, even in a classroom full of people. 

4. Hugo* – Loneliness on the stage

Actor Hugo, who has found success both in Hollywood blockbusters and global TV hit series, found managing T1D during his acting career often led to feelings of loneliness. On stage, he would sometimes experience blood sugar fluctuations but had to keep going. Others in the cast couldn’t fully comprehend the fear and discomfort he was experiencing, creating a sense of isolation. During the early years of his career, Hugo wasn’t open about being T1D, which made him feel even more alone. The constant self-management and his fear of judgment created a sense of emotional isolation, despite his success and public presence. 

5. Mel* – Loneliness as a campaigner and advocate

Diabetes activist and campaigner, Mel, felt lonely despite being deeply involved in the diabetes community. While online communities for people with diabetes are incredibly valuable, Mel found that they didn’t eliminate the sense of loneliness that came with managing T1D day-to-day. Even though she could connect with other people who "got it," the personal burden of blood sugar checks, injections, and the unpredictability of diabetes made her feel alone at times. T1D is “invisible” by nature: we can look healthy on the outside but struggle internally with both the physical and emotional aspects of the disease. This means that others didn’t fully grasp the psychological and emotional burden that comes with constantly managing T1D. 

6. Emily* – Loneliness in teens

Writer and diabetes activist, emily, was diagnosed with T1D as a child. She felt lonely as an adolescent, because of her condition. While friends were managing the typical teen challenges, Emily was managing a chronic illness. Her friends didn’t understand why she couldn’t just forget about T1D or why she couldn’t be as spontaneous as them. T1D management made her feel "different" in high school, a time when all we want to do is fit in! She felt isolated because she couldn’t fully participate in activities like sleepovers or hanging out with friends, without worrying about her blood sugar. Her friends cared about her, but they could never fully appreciate what she was dealing with – which made her feel lonely..

Practical Tips to Overcome Loneliness in T1D

If you’re already preoccupied with managing T1D, it’s hard to find the energy to deal with loneliness. 

Here are some of the simple and stress-free strategies which help us feel less isolated. Try some of these small but meaningful steps for yourself and discover that T1D needn’t be lonely. It can also be the driver that helps you open doors to whole new exciting and supportive communities…

Start with self-care

Start with you. We’ve experienced for ourselves the benefit of incorporating self-care routines; trying mental health wellbeing practices (including mindfulness); seeking therapy; or finding and joining T1D or wellbeing support groups. Start today! Make self-care your first step.

Focus on what you love doing and the things you really enjoy: your hobbies or interests. Get involved in local or online hobby groups (art classes, sewing workshops, Dungeons & Dragons meets, book groups, whatever you like). These are all excellent opportunities to make connections with like-minded people – helping you feel less isolated or lonely.

If you need help, get help: speak to a reputable therapist to explore what’s causing these feelings and discuss solutions. (We suggest researching therapists who are specialists in diabetes or chronic illness.) 

Find your tribe and build your support system. Be open with your friends, your family and your healthcare team if you’re struggling with loneliness. By letting them know about it, you’re actively reducing the emotional distance that can create or heighten loneliness. This will help you start building the strong support system you need to get the emotional and practical support you need to make that journey less lonely.

Create an environment in which you feel safe and supported. If you are socialising (or in any social situation) then let people know that you are T1D - and flag up any specific requirements. It will begin to help you feel less “other”.

Stronger together – discover your wider T1D community

Whether local, national or global, there is an active and supportive T1D community out there – either in person or online. Technology makes it even easier to find your T1D community: social media groups and online forums are a great place to share your story, provide and get support, and ask questions. You can connect with other T1Ds worldwide using Beyond Type 1 or Diabetes Daily. The more you engage, the less alone you’ll be.

1. T1D support groups (local or online): a safe space to share, learn, encourage and be supported, and meet people who understand exactly what you are going through.
2. Get a T1D mentor: a great source of emotional support is someone who’s lived exactly what you are going through right now. They can offer you valuable guidance and super-practical advice. (Look into mentorship programs such as those run by Juvenile Diabetes Research Foundation.)
   
   Building meaningful friendships in the T1D community can be life-changing. Discover how in our Guide to Building Meaningful Friendships in the T1D Community.
   
   
3. T1D camps/retreats: a fun and relaxed way to meet others in the same T1D boat as you. You’ll learn tried and tested strategies, and great new ways to manage T1D – and maybe even make lasting new friendships.
4. Get moving: exercise is great for your mental health. Sign up to a local fitness class or sports group. You should be able to find local groups which are T1D-friendly. Try T1D Athletes to start.
5. Be part of something bigger: Get involved in T1D/diabetes advocacy or volunteering within the T1D/diabetes community. By helping others, you will gain a stronger sense of belonging and a greater purpose. Help with awareness raising campaigns, raising money for research, or helping organise local T1D events.

Loneliness and feeling isolated is an incredibly common challenge when we’re managing T1D. If you are feeling lonely, or have periods of feeling lonely, then you’re definitely not alone.

Help and support is available – you just need to know where to look. Start with being more open with those nearest to you, speak to your family, friends and partner about what’s challenging you and how you are feeling.

If you need professional help, seek out healthcare professionals specialising in diabetes and chronic illnesses to ensure your psychological and mental health needs are being met in addition to your physical needs.

Finally, get involved in some of the many local or global in person or online communities which are safe spaces where you can talk openly and seek strategies and tips, free from judgement, ignorance and misunderstanding.

What you can do next

Please join the conversation. We’d love to hear in the comments about your own coping mechanisms – they will be super-useful to our community.

If you’re suffering from loneliness right now and want to speak to somebody, then contact The Diabetes UK Helpline - 0345 123 2399. This dedicated diabetes helpline is open Monday to Fridays, 9am to 6pm, for anyone managing diabetes, or your family or friends.