Aruna's story: importance of emotional support from family and community

• Aruna lost her motivation to manage her type 1 diabetes a year into her diagnosis and suffered diabetes burnout.
• The emotional support from her family, GP and diabetic nurse helped her to get through this.
• Aruna believes being open about needing emotional support is very important. 
• She likes to stay active and loved learning more about healthy eating with a DAFNE course.
• She’s also found support through the Diabetes UK helpline.

My constant worry is the risk of developing diabetic complications - this is always on my mind and being around for my husband and family. I worry that if I have a bad day I am increasing my risk of developing serious complications. 

I think I am really hard on myself which is something I am working on, because if I have a bad day I really beat myself up. Also diabetes is always on your mind, it’s something you have to take into consideration when you are planning your day to day life. 

For example, I can’t spontaneously go to the gym without thinking about what I will need to eat before to avoid a hypo or do to reduce my insulin. I miss the days I used to have before I was diagnosed where I didn’t have this huge condition on my shoulders. 

We never switch off from managing diabetes, we don’t get any holidays from it and that is really hard to accept at times. 

One of my biggest frustrations is the lack of education surrounding diabetes. I never realised until I got this condition how offensive it can be to ask someone ‘is that the bad type’ or ‘you aren’t fat though’. We all really need to do more to educate people on this.

Support from family and friends

Support from family and friends makes it so much easier to live with diabetes. For me, ideal support is someone just listening to me rant and rave about the condition, in particular if I am having a bad day I will call my mum and just cry down the phone. This helps me so much. 

My mum doesn’t tell me what to do, she just listens and I feel so much better. She empathises with me and allows me to essentially feel sorry for myself for those few minutes whilst I am on the phone.

For me it’s just about having a person to turn to and be able to just off load all the thoughts and stresses of diabetes. One time I came out of my six-month review with my diabetic consultant and rang my mum. I just cried about having diabetes and how it’s not fair. 

My mum listened, didn’t tell me ‘that there are people worse’ or that I should ‘exercise more or try a new remedy’ or offer any solutions. She just allowed me to offload. 

I felt so much better after that phone call and the next day felt much more able to manage my condition.

As diabetics, we are constantly thinking about our condition. When we wake up when we go to sleep, when I step into a meeting, it’s always on the back of my mind. Once in a while I like to just let off some steam and for me that’s just calling my mum or chatting to my husband. 

I really like the fact that my friends and family don’t judge me. This makes it so much easier to approach them for support. Managing diabetes is a full time job and we are always going to have phases where we slip, but it’s how we get back on track that matters. 

"I like to think of myself as a positive person but even I have days where emotional support is so important. Without it I don’t think I’d be able to cope with diabetes." 

A couple of years ago I suffered really badly with diabetes burnout, but had the most supportive family who got me through this. 

I had my diabetes burnout during my second year into managing diabetes and I really just lost any motivation. For the first year, with it being so new I was committed to managing my sugars, checking them regularly and changing my diet. Once I entered my second year I lost all motivation. 

I would stop checking my sugars and avoid talking about the condition. I think a part of me was in denial about having diabetes. I tried to just forget I had it.

I would still take insulin but wouldn’t care to check to see if I was having enough throughout the day. I remember speaking to family, friends and even my consultant who warned me on the diabetes complications, but even that didn’t motivate me to fix up. 

I often describe managing diabetes as a 24/7 diet that you try to maintain. Usually people stick to a diet for a couple of weeks or months, but this is for life so it can be really hard to stay motivated.

I think it impacted my family quite a bit. I remember it also impacted my husband quite a lot to watch me not care or check my sugars. I remember really pushing him away and feeling quite isolated. I also remember just having no emotion when someone would tell me that I’m destroying my health or likely to develop complications if I carry on. 

The biggest wake up call for me was my really high HbA1c, which was the turning point for me to overcome diabetes burnout. It really hit me hard when I found out my HbA1c and I had an urge from within to fix up. I think seeing the number on a piece of paper made it feel so much more real. 

What helped me the most was my care from the NHS. My GP set me up with a really helpful diabetic nurse, they enrolled me onto DAFNE and were keeping in regular contact with me. Having their support and backing was critical for me in overcoming the burnout. 

They were so patient. They referred me to a counsellor, I had a dedicated nurse and a new diabetic consultant and this really changed things for me. It was the change I needed and really helped me to get back on track.

Emotional support

I think we need to be much more open about the emotional support we need as diabetics. It’s not just the physical support of getting insulin, and the regular doctor appointments but also the mental aspect of listening to someone when they are having a bad day. 

If we don’t talk about the support we need, people won’t think we need it and also diabetics will think there is something wrong with them for wanting it. 

We need to make it really clear that it is perfectly normal to need emotional support.

I think as well as seeing your consultant we should also see a psychologist or counsellor yearly for a check-up. 

In addition, being there for an individual when they are going through diabetes burnout is so crucial it can be the turning point they need to get them back on track. It happens way too much and people need to be aware of how much diabetes does impact your mental health. 

Emotional support will mean different things to everyone but for me it’s having someone who is there to listen and offer advice (if I ask for it). I like to know that there is a ‘safety net’ to fall back on if times get rough. 

My advice

My advice to people with diabetes to avoid diabetes burnout is to not be too hard on yourself, every little step you take or achievement you have with the condition is a huge deal and we should be proud of how we manage this condition. It takes strength, resilience and hard work to manage and I don’t think we give ourselves enough credit. 

To avoid getting overwhelmed I suggest speaking out to your family or friends when you feel as though it’s all getting too much.

Ask for help through your consultant or GP. Reward yourself - when you have a good week, month or year, treat yourself to some time away, a holiday, a shopping trip, a meal out anything that makes you feel good. 

When my HBA1c came down I remember treating myself as it was a huge achievement for me. 

Don’t be afraid to admit that you are going through a burnout, it’s completely normal and there are people who want to help you, don’t push them away. If it happened now, I’d call the Diabetes UK helpline.

I work within an office environment and try to get to the gym 2-3 times a week. I find that it really helps with my insulin sensitivity and also makes me feel so much better. I always find that if I go to the gym my sugars are really good for the day after. 

I do need to be really careful though that I reduce my insulin before a workout and also watch it afterwards as I can sometimes get hypos. Having diabetes has made me think more about eating healthy. 

I personally feel that there needs to be more education on healthy eating. DAFNE was a brilliant course and taught me so much. 

Don’t get me wrong though, I have a sweet tooth and I love a treat but I do like to think about my food options a lot more and try to maintain a healthy diet.

I always find that if I have a big meal a short walk after makes me feel much better.

I remember I called the Diabetes UK helpline when I was first diagnosed. The support they offered me was second to none. 

They listened, they were patient, answered all my questions and really were able to empathise with this new situation I found myself in. 

I love the work that Diabetes UK does to raise awareness of different types of diabetes, how difficult it can be to manage and also the education it provides the general public who don’t realise how much this affects the person living with it. I love the social media presence Diabetes UK has created and that I can really resonate with them.

Did you know that 7 out of 10 people have felt overwhelmed by the demands of living with diabetes? But most people can't get the emotional and mental health support they need. Aruna was one of the lucky ones.

This has to change. If you agree, please join our campaign today.