Sara's story: my experience with diabetes burnout and how I manage it

• Diagnosed with type 2 diabetes in January 2015.
• At diagnosis, Sara was overwhelmed and confused by the amount of information she initially received about managing her type 2 diabetes.
• Sara was told that she should go on metformin, but chose to control her diabetes with diet and increased physical activity. She sees her GP about her diabetes every six months.
• She subsequently found managing every aspect of her diabetes was taking over her life – with so many appointments. And she still finds the day-to-day planning of life with diabetes hard to juggle with all of her other commitments.
• Her HbA1c levels are low now – which makes her wonder if she’s in remission. 
• Sara would like to have more psychological support for her diabetes, and feels that – at times – she ‘hits a wall’ and doesn’t care about her diabetes any more. She’d like to have been given more information about the emotional impact of diabetes, so that she could have prepared herself better for it. 
• At times, Sara feels the stigma of having type 2 diabetes affects her mental health. She feels embarrassed about telling people she has type 2.
• Sara has an identical twin, who hasn’t been diagnosed with type 2 diabetes and worries that she may develop the condition at some point.

When I was diagnosed with type 2 diabetes in January 2015, I remember spending four hours being told by the diabetes specialist nurse (DSN) about what food I should be eating to manage the condition, which just left me feeling confused and frightened. High GI diet, low GI diet – I was also totally confused about what sort of diet I should be following. 

The DSN wanted to give me metformin, but I wanted to try to manage my diabetes with diet alone. So, I was told to diet, lose weight and do more exercise. I was sent on a diabetes education course. After that, I was just left to get on with it, thinking that one day I’ll be on metformin. I know diabetes can progress, and I worry about that.

My children are really strict with me about my diabetes. They don’t want me to be overweight. They keep nagging me, but I just want them to leave me alone. 

You need someone different – outside the family – to talk to about it. And I think that someone else with diabetes would be good for me. I haven’t explored local support groups, but I could see the benefit of doing so. I’d like to meet more people with diabetes, and invite them round for a cup of tea and a chat.

I have an identical twin sister. She doesn’t have type 2 at the moment, but she has the same eating habits as me and weighs the same as me, so she’s worried about getting it.

I do talk to my husband and kids, though. They’re really supportive, but some days are better than others. I don’t want to burden them with my innermost thoughts. They share my lows and highs – they’re down with me and they’re up with me.

Diabetes care 

The letters I receive about my diabetes are like the ones in Harry Potter – flying through the door. You get diagnosed and asked to go for an eye test, foot check, blood pressure, cholesterol… the list goes on.

At times, I feel like diabetes is taking over my life because of all the medical side of things, which I have to think about – it’s hard to understand them. 

The day-to-day planning when it comes to having type 2 diabetes is exhausting. Dinner, food shopping, swimming – fitting everything in. Nobody tells you what you need to do. So there’s a lack of information. Sometimes, I feel that I can’t live like this – there has to be some flexibility. 

The treatment I get from my GPs is so inconsistent when it comes to my diabetes – one seems to care, and the other doesn’t.

Sometimes, you just need some comfort. Some motivating words saying you’ve done well – to let you know that it’s not an easy ride, you can do it. If you fall off the wagon, you can pick yourself up.

The doctors are all busy, everyone’s busy. But I need some support. 

If you hear someone official saying that you can talk about your emotions or ask you if you’re OK – it’s more official, believable – you can do it. So if they asked me about how I was feeling, I’d talk.

I question the public’s understanding of diabetes and mental health – people are still very embarrassed about mental health. If you talk about having anxiety, people look at you and think it’s stupid. 

But it isn’t just people who eat too much fast food who get type 2 diabetes. You could be slightly overweight, or it could be you’re genetically disposed to it. 

Diabetes burnout

Sometimes, I feel like I’ve hit a wall and I don’t care about my diabetes any more. It feels like my body shuts down. It’s such a strange sensation – I can’t really explain it. 

When I feel like this, I think, ‘Why don’t I care about my diabetes?’ I do care about it, but – at the same time – I don’t. If someone had warned me about it beforehand, I might have recognised the feeling and felt more prepared.

My GP has specialised in diabetes, but he doesn’t care about my emotions. He does all the physical checks, like my feet and blood pressure that say I’m OK, but doesn’t ask me how I am – how I’m feeling. Something’s missing – I don’t get an explanation. 

So I went on Google – looking for ‘diabetic wall’. If someone had prepared me when I was diagnosed with diabetes, by saying, ‘This is what you might feel emotionally’, that would’ve helped. Sometimes, I’m just so tired of it all.

Stigma and diabetes

I think that the media spreads the stigma about diabetes – referring to it as a deadly disease is very negative and it makes me feel despondent. People think I’m just a pig who deserves having this condition. The stigma of diabetes affects my mental health. 

At work, I say I have to stop at certain times and have a cracker. It’s mortifying telling people I’ve got type 2, ‘the fatty one’.

I want the messaging to be, ‘You can have fun still, you can live still. Diabetes can be in the background, not always at the forefront’. It’s normal to think frivolously about smoking, eating chocolate and drinking alcohol sometimes – we all do things that we shouldn’t do. You’re made to feel like you’re putting all this strain on the NHS. 

When I say that I’m diabetic, straight away people ask which type I have. It’s embarrassing to have type 2 diabetes. I’m fed up with this label. I want to help spread awareness of type 2 diabetes.

I don’t have a DSN now – I only saw her the once when I was diagnosed. But, that said, I haven’t necessarily asked for a DSN. I usually go to my GP about instead. 

I’m still controlling my diabetes with diet and I go to my GP every six months for my checks. 

My HbA1c levels are low now – in fact, they’re really good, which makes me wonder… am I in remission? I don’t know the answer to that – I could test myself, but I don’t. 

I lost 6st, then put it on again, and then went on a SlimFast diet. I did well on this. My doctor said this was good. I’m also very active – I swim a lot.

I check my feet a lot, too, for in-growing toenails, say, and go to my podiatrist. And I’m constantly watching for complications, but am not always totally sure what I should be doing and whether I should be calling my doctor or not.

Test strips

I feel that having access to test strips is another issue – we’d save the NHS more, overall, if we were able to physically see changes in our blood sugar levels. I’ve not been offered test strips, but I have no idea if I should be using them or can get them on prescription in my area. This is something I’m not well informed about. 

But if you don’t test, you can’t see what’s going on and you can almost ignore it – but I know the risks with this leading to complications. 

My day job is working in hospitals and, as you can imagine, there are so many biscuits and cakes around, which people bring in. 

When you have diabetes, the message seems to be: ‘You can’t eat that – do this, instead. Do this or you’ll lose a leg or die’. It’s so negative. And it makes me feel like I’ve got to live on veg and pulses, and if I don’t, I’m going to lose a leg or die. 

But I have headaches, feel tired and run down – and I’m tired of looking at the labels. I’ve almost become food obsessed. Low sugar or low fat? Can I eat this? How much activity should I do? 

We’ll also have brown bread for sandwiches and salad, and fruit snacks. And if we’re having mash as part of a meal, we use half potato, half sweet potato. I also have SlimFast – I sometimes do that for breakfast and lunch.

I was told that it’s important to keep physically active and to move around more. I have a Fitbit and I’m obsessed with how many steps I can notch up in a day. But I wonder what I’ll do when I’m older and I can’t move around as much any more, which is a sobering thought. Maybe I’ll have to do armchair exercises then.

I want to concentrate on myself and swim more – but I’m too busy and feel tired at the moment. So I’m planning to take a week off. Then, I’ll have time to go swimming every morning. 

Back in 2016, I rang Diabetes UK when my blood sugar levels were really low – my HbA1c was around 36 to 38mmol/mol. My sister kept saying that I was in remission, but I was really confused. 

Even then, when and if that happens, I still need support as I’m not sure whether remission is permanent. 

I also got Balance magazine and dietary advice, so they’ve been really helpful. That’s another reason I want to help them raise awareness of emotions when it comes to diabetes.