Stigma awareness

I first became aware of diabetes stigma from Instagram posts and people talking about type 1 diabetes and type 2 diabetes and making a distinction between the two types – although over time I experienced it on a more personal level.

When I told people that I had diabetes there always seem to be that intrusive question of ‘what type?’ almost in a judgmental sort of way. Or I might be out with friends and be eating something and someone would say ‘are you sure you should be eating that?’

With my friends I know it always came from a good and well-meaning place, but it felt like they didn’t fully understand my situation and realise that I was capable of deciding what I can and can’t eat. So those were the first instances of stigma that I experienced. 

Stigma is that sort of discrimination that the more you become aware of it, the more you notice it. When my mum was explaining that I have diabetes to her friends – their reactions varied, but some would say ‘oh is that because she ate too much sugar?’ or they would say ‘but she’s young and so healthy, so how could she have diabetes?

Impact of stigma

Diabetes stigma began to impact me in a gradual way and then built up over time, which made me recognise that stigma was having an impact on me. With my friends I would defend myself but also worry, ‘am I doing something wrong?’

Stigma makes you question yourself and despite knowing the facts about diabetes, it does make me wonder at times if I did do something wrong. I often talk about external stigma, which usually comes from people I’m not close to or don’t know very well, so I’m more readily able to brush off what they say, because they don’t know me well enough anyway. Stigma does feed into how I feel, but I’m a lot better at ignoring it with people I don’t know well’.

However, with people closer to me like my friends or people who I’ve known for awhile, comments can feed into the internal stigma and how I feel about my diabetes - even if they don’t mean to be judgmental or add to the stigma. I feel as if I’m continually trying to prove what I know to myself, as well as feeling that I have to prove it to other people too. Diabetes stigma is very complex and there’s a lot more to it than how you look and what you eat, its also about how it makes you feel.

Generally, I’m quite a confident person but growing up I did have an anxious predisposition - so constant stigma eventually weighs on my confidence. I’m happy to share information and facts about diabetes, but when it feels I’m only doing that to prove a point to people that their misconceptions are wrong, then it becomes very tiring.

Challenging authority

One aspect of stigma that I experienced with my diabetes journey was at university. One tutor in particular (and this has all been dealt with by the university) would always move the conversation onto talking about my food and carbs, and what things were good or bad for me, whenever I spoke about my diabetes. She would also make comments about losing weight, which having lost a significant amount of weight when I was diagnosed is quite a difficult subject.

Those sorts of conversations felt very uncomfortable and made me realise that some people don’t know a lot about type 1 diabetes and are so entrenched in the stigma and their belief that they know more than you, that they’re not willing to understand your perspective.

The message I got from her was I shouldn’t eat carbs and I needed to lose weight, and it didn’t really matter what I said. I did try to challenge her, but I’m not very confrontational so for me that was difficult. It was a very tricky situation because as much as I wanted to fight the stigma and make my point there was also a power imbalance as she was my tutor, and I was the student – so there was that boundary and knowing how far I could go with ‘calling her out’. And I’m guessing people may struggle with similar situations in the workplace.

I’m happy mainly because of love. I love and I’m loved. I’ve had a very interesting life and done lots of different things, it’s been absolutely wonderful.

I can talk, I can walk, I can sing. I was doing Irish step dancing for 20 years but I stopped because I had a stroke. It’s an appalling burden on you to have diabetes. But I feel I’ve got off nearly scot-free. It’s not easy, you can’t prepare for all the things that happen. 

I’ve been a member of Diabetes UK since 1956. I like the magazine. I read about research and then I do the crossword first.

"But the thing that helps me the most, which I discovered about five years ago, is the forum. It’s full of absolutely brilliant people, who are helpful in ways they don’t even know." 

I wrote in about the difficulty of controlling blood sugar – and very carefully thought-out replies came back immediately – and they’ve got diabetes of different sorts. They give you moral support and the fact they’re willing to give you advice warms your heart. It’s fantastic.

I like to encourage the people on the forum who have just been diagnosed. I say: Well, I’ve had it 60 odd years, and it’s like this and these are the problems. I let them know that you can survive, but you need to pay attention to your diabetes every day.”

Then you lose your money as well - I'm a self-employed bookkeeper. I've been employed before in various accountancy firms but with my illness, with my surgery, I've had to give up work at the moment which is really tough. 

And then there's the day-to-day stresses. For the past 40 years I have been a very loyal supporter of Plymouth Argyle Football Club, going to all the home matches and quite a few of the away matches.

But since the surgery I haven't been able to go and I'm missing it big style, and with that lack of of social contact and immobility because I feel homebound, it really has affected my mental health.

It's the simplest little things that can be taken away from you or the simple things that you can miss when you're housebound. I really miss just walking down past the river and listening to birdsong, or walking down to town and going to have a coffee somewhere. The impact of diabetes, it touches so much of that.

Thanks to the programme I’ve lost two and a half stone, lowered my blood pressure and I’ve now been told I’m on my way to remission. I can’t believe I’m on track to put my type 2 diabetes into remission and feel so proud of myself. My self-esteem and mental wellbeing have also improved, and I’ve got so much more energy.   

For anyone out there who is struggling with a type 2 diagnosis, I’d encourage them to find out more about type 2 diabetes remission and the benefits this can have for your health. For me, finding out about type 2 diabetes remission has been truly lifechanging. 

“We’re so pleased that the NHS England Type 2 Diabetes Path to Remission programme exists and Tim’s story shows that losing weight can bring about many benefits. I’d encourage people living with the condition to speak to their GP about the programme.

We recognise that people have been asking for more help and support to understand type 2 diabetes remission and how to achieve it. In response we’ve launched type 2 remission area on our website, where people can find a range of advice and guidance. We also have our local support groups that are a great place to meet other people who can share their experience of managing type 2.” 

- Phaedra Perry, Head of Diabetes UK – south west and south central

You have to be motivated and I had to find the right way for myself. I think clinicians are great at the job they do, but they were unable to give me all the information I personally wanted. I felt I needed to do my own research into nutrition, to give me confidence and find a way forward that's right for me. If that means experimenting and trying different things, then so be it, and if it doesn’t work then I’ll try something else.  
 
At the moment I’m just so happy that this is working for me. In about three months I’ll go for a blood test and see my doctor to check if I’m in remission. I’ll take it from there and continue with my reviews, such as my annual diabetes review and retinal eye screening, which are still so important.   
 
I don’t think you need to do extreme exercise; I’ve just started back with walking our dogs with my husband, I go to the gym and enjoy aqua aerobics and light yoga, which both protect my ankle. I find that’s enough for now.