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

I was diagnosed with type 2 diabetes in 2015 at the age of 47. I didn’t have any of the typical symptoms like being thirsty or going to the toilet more than usual.

I had lost a bit of weight, and at the time I thought I might be experiencing early menopause, so it was very much a surprise when the surgery got in touch asking me back to do a repeat blood test, and then confirming I had type 2 diabetes.

The biggest misconception about diabetes for me is that people assume you’ve caused your diabetes by not looking after yourself, through drinking and eating too much sugar, and that isn’t necessarily the case. That certainly that wasn’t the case for me and I’m not alone in that.

Even now I still get people saying in surprise, "What, you’ve got type 2 diabetes? You can’t possibly have type 2 diabetes". And that’s not just friends or family but its also healthcare professionals saying that, so for me that is the biggest stigma.

We need to move away from that stereotypical vision of what someone with type 2 diabetes looks like, and while some people are able to put their type 2 diabetes into remission with the right support, this is not the case for everyone, and it's not just a case of simply changing your diet.

Also, people make assumptions about the condition and for example when you’re having a hypo – people often mistake that for being drunk and so you can easily be misjudged.

My response to negative experiences has become a bit more forthright and I won’t just say, "I’ve got type 2 diabetes", instead I strongly say, "Yes, I’ve got type 2 diabetes despite eating a healthy diet and being active, and I’ve never been overweight nor is there type 2 diabetes in my family."

I now explain more about my situation and in my own small way I’m trying to educate people that if it can happen to me it could happen to anybody.

As time has gone on, I’ve become more confident in my knowledge about diabetes, because my diagnosis was so out of the blue and it was a steep learning curve for me. So I do feel justified in challenging people when they don’t have the right understanding about the condition.

I feel most impacted by the way people look at me. I’m 5ft 4 and weigh 58 Kilos, and I can see them looking at me and trying to process that I have type 2 diabetes, and that’s quite hurtful.

Mentally it really infuriates me because diabetes is serious whether it's type 1 diabetes or type 2 diabetes. I never wanted this condition, but I’ve got to live with it and I do find it really difficult to come to terms with other people’s attitudes about diabetes, especially type 2, as if this is something I wished upon myself.

Coming to terms with my diabetes is an ongoing process that I’m still going through, I’m no longer as angry as I was, which was my overriding emotion for many years.

Angry about the diagnosis, angry about the unfairness of it, I still do get resentful about it, but I’m getting better at that. However, I do get cross when people judge, and I don’t think that will ever go away.

Tackling stigma

There needs to be a broader campaign about all the different types of diabetes, not just type 2 diabetes. We need to educate people more and make sure there’s a better understanding of diabetes and it doesn’t follow that you have to be overweight to have type 2 diabetes.

There also needs to be more awareness of all the different types of diabetes, although they may be very rare, we mostly hear about type 1 and type 2, and there’s an assumption that you fall into one camp or the other.

What if we removed pressure to justify your type of diabetes, or what factors were involved in developing it - rather than saying type 1 or type 2 - which can pigeonhole people at that early stage, and then only you know what type you have, and your specific treatment path is private to you. I do wonder if diabetes is not being taken seriously enough and we’ve become too blasé about it.

What people need to know

People need to know not to make assumptions based on what they think they know about diabetes, as it’s probably incorrect and not as straightforward as some publicity would have them believe.