Nicki's story: removing the stigma around type 2 diabetes

• Diagnosed with type 2 diabetes at the age of 46.
• Had no prior symptoms and was very surprised when she received the diagnosis.
• Feels frustrated that she can’t pinpoint a reason for her condition, and because of the impact it’s had on her life.
• Feeling worried about going back to work during the coronavirus pandemic.

Unexpected diagnosis

I visited my GP because I’d been feeling really tired, weepy and moody. I thought it could be early menopause as I’d had a hysterectomy a few years before. The doctor agreed this could be the case and did a blood test, and told me to come back in a week’s time for the results. However, the surgery phoned the next day and said I needed to come in. I assumed they were just going to tell me I needed HRT and so I waited the week before I went in. 

The doctor couldn’t believe it either. It hadn’t even been bandied about as a possibility - because I hadn’t shown any of the other symptoms it just wasn’t on anyone’s radar. 

At the time of my diagnosis I had a really healthy BMI and was fit and healthy. I had an active job, three kids to run around after, and a dog I walked every day. I had kept active over the years and had always had a healthy diet. My dad has Type 1, but the doctors said this was triggered by an operation that went badly wrong many years ago.

I was immediately put on metformin and had to go back for another blood test after three months. However the metformin but it wasn’t effective enough. They had to add in Gliclazide fairly soon because it wasn’t bringing my levels down as quickly as the doctors would’ve liked. 

Beyond medication my doctor didn’t suggest anything else. I’ve made modifications, such as being aware of what sugars I eat, although I never had a huge amount of sugar in my diet in the first place. 

I was sent on a Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND) course. I didn’t find it beneficial but looking back I felt really angry at the time and probably went into it with the wrong mind-set. 

I already felt pretty rubbish about everything and this didn’t help. Diabetes has had a massive impact on my life. Even now I experience low times and I’ve only just really started to come to terms with it. It impacted my work.

Part of my job is social, emotional and mental health coaching, which I then found really hard to do. It was hard to be around other people’s problems. Also, while they’ve been balancing my medication I’ve had a few hypos overnight, which have left me feeling really horrible the next day. 

My family and friends were really shocked by my diagnosis. I think they find it hard because they have this idea of what a type 2 diabetic should look like. In fact, they always assume I’m type 1 and when I explain it’s type 2 they look at me like ‘how?’ or ‘why?’ For a lot of people I don’t fit the stereotypical idea that everybody has of a type 2 diabetic. 

I think that my low mood and feelings of frustration come from the unfairness of my diabetes diagnosis. I feel I have to justify the condition to other people, including health professionals. 

I remember visiting the nurse practitioner who noticed from my notes that I had type 2 diabetes. She said, ‘Oh you’re a type 2 diabetic, have you lost a lot of weight?’

I still go for my HbA1c tests every three months. I went to see a professor at the endocrinology centre in Exeter, because my GP was really struggling to get my diabetes under control. They did genetic testing which came back as negative. But the specialist thinks I fits the Maturity onset diabetes of the young (MODY) model as I’m really sensitive to the Gliclazide. That’s the drug they’re struggling to balance – the metformin is fine. 

This all makes me feel constantly frustrated. With diabetes being such a common condition, I don’t understand why they can’t get it sorted and why four years later I still need to have blood tests every three months. I feel frustrated that I’ve got to live with this and I want to get it under control, so it doesn’t feel so prominent in my life. 

Generalisations in the media also make me feel down. I think there’s is a lack of understanding about diabetes. 

I feel for my 13-year-old daughter, who has had to learn enough to be able to help if I have a hypo. My daughter very much feels that responsibility and worries about me. If I’m late home from work my daughter panics that I’ve collapsed. So she carries a lot of the burden, which is hard. 

Worries about going back to work during the coronavirus (Covid-19) pandemic

I’ve gone back to work one day a week, which I was extremely nervous about. It’s actually been OK as there are currently only three children, which means distancing and cleaning is pretty straightforward. However, it's the little things that I find tricky, such as if one of the children falls over or gets really upset. Normal primary school is pretty tactile, so that’s been hard to get my head around.

My school are great at the basics (distancing, hand washing, wiping services down, having your own stationery) but how this will work when we have the potential of three year groups in is very much up in the air. The buildings aren't very big and primary is such a hands-on environment.

The more push there is for schools to reopen, the more nervous and worried I get about my own health, and that of my family. I just can't see how we are going to be able to keep it as a safe environment for the children and adults, and the thought of a 'second wave' terrifies me, especially with the added complication of diabetes. I am even considering whether or not I would be able to work depending on the numbers of children we have back. 

The headteacher leaves the decisions to each individual person. It's fine at the moment for us to say 'no', but I don't know if that will be the same when we start to return to a more normal school day. Like everyone else, I am just waiting to see what announcements are made about the way forward, but I know that my anxiety levels are increasing as time goes on and I worry very much about how I'm going to manage that, as we start to return to a more normal way of life.

I’ve got information from the Diabetes UK website and read the real life stories, which have helped. If I get a symptom and wonder if it’s to do with my diabetes, I’ll have a look to see if anyone else has experienced the same.

I think that the DESMOND course is good but emotional support is massive, particularly if it’s not a diagnosis you were expecting. I think getting emotional support should be an automatic thing.

The hardest part of living with diabetes for me is the stigma – the assumptions that people have about type 2 diabetes. I find that they’re judging me, rather than thinking it’s still me.