Bethany's story: A misdiagnosis and living with stigma

“I was originally diagnosed as having type 2 diabetes and that was based largely on the fact that I was overweight. It was basically assumed by my GP that I had type 2," said Bethany. 

Not everyone with type 2 diabetes is living with overweight, and the causes of type 2 diabetes are complex. Read more about the causes of type 2 diabetes here.  

“I was fortunate that I found out without ending up in hospital, but it was purely by accident. I’d been to see my GP for something else and they told me they couldn’t make a referral until they’d tested me for two things. They told me not to worry because I definitely didn’t have either of them, but they had to do the tests anyway. When the results came back, they were positive for both things, including type 1 diabetes.” 

Bethany started her job around the time she was diagnosed with diabetes, and so her employer has been with her from the very start, and has been supportive throughout. 

“Back in the early days when they thought I had type 2 diabetes, so I was sent on a DESMOND education course and started on metformin. Unfortunately metformin did not agree with me, and when I told my GP they were happy to take me off it, but I just assumed that the people running the DESMOND course would give me a prescription for something else. I ended up without any diabetes medication for three months while I waited for the course to start. 

“At the DESMOND course we all had to mark our HbA1c on a chart, and because I actually had type 1 diabetes and no medication, mine was off the chart. At least that meant I was finally given an urgent referral to the right place.” 

Experience with the healthcare system 

Bethany’s diagnosis story doesn’t end there as her hospital referral lead to genetic testing to determine whether she had MODY or type 1 diabetes. Her first set of results got lost, leading to further delays and uncertainty about what her diagnosis was for another six months. 

“It was about a year from first being diagnosed with type 2 before they confirmed I actually had type 1. I suppose the upside to all of that is that I feel like I’ve got so much knowledge about type 1 and type 2 diabetes.” 

Bethany says she’s experienced stigma from the very beginning of her life with diabetes as her doctor assumed her weight meant she must have type 2 diabetes. Not everyone with type 2 diabetes is living with overweight, and in Bethany’s case she had an undiagnosed underactive thyroid, where common symptoms do include weight gain.  

Type 2 diabetes is a complex condition that is often mistakenly linked only to a person’s weight. While we're still uncovering the exact reasons behind it, we know that it results from a combination of factors, including our surroundings, our genes, and social influences, such as stress, mental health and access to support systems. 

“I feel like there’s a lot of stigma about how people look when it comes to diabetes. Everyone expects people with type 1 diabetes to be skinny and people witth type 2 diabetes to be overweight, and because I didn’t look like anyone’s idea of someone with type 1, I didn’t get the right diagnosis. People tend to get put in boxes or labelled with things that really aren’t true at all.” 

It’s not just in healthcare where Bethany has experienced stigma – she’s felt it from other people living with diabetes too. 

“I have quite a high insulin sensitivity, so when I take insulin, I need to take quite a lot each time. When I’ve tried using online forums and websites in the past, people have judged me or felt the need to comment on it. The people who you think are supposed to be there to help and support you can end up doing the opposite.” 

The impact of stigma can be wide-ranging and Bethany herself says she’s had a bad time of it.

“I’ve felt a lot of stigma around injecting – either feeling like I need to do it somewhere in private, or people round the table asking me not to do it in front of them. 

“I got to the point where the lumps and injecting all the time basically gave me a fear of needles and I had a period of around six months where I had high blood sugar all the time because I didn’t want to inject.” 

Stigma also has an impact on socialising. Bethany says that a lot of the time she has to really decide if she can be bothered to go out for a meal with friends as the questions about why she’s spending time working out carb content wear her down.

One of the most common things we know people with diabetes hear is ‘can you really eat that?’ and Bethany says this impacts her a lot. “I don’t want to just go out and have a salad, but it’s usually the easiest option to avoid a lot of questions, but it isn’t really what I want.” 

Bethany says that there’s a perception that diabetes is just “inject and get on with everything” but it’s so much more than that.

“It’s so much more complicated than anyone really understands. ‘How much insulin do I need to inject for this meal’, ‘have I actually remembered to inject?’ – those things are constantly in your mind. So much of what people with diabetes have to do is hidden. Even my husband who’s around me all the time doesn’t really see it and I think you can only truly ever understand it if you have it yourself.” 

The biggest misconception Bethany comes across and wishes people understood the truth about was the relationship between diabetes and food.

“I think the thing probably everyone would say is that question about ‘should you be eating that?’ or ‘why don’t you swap that for something lower carb?’ In our work chat we were talking about some fundraising work we’re doing for Diabetes UK and a presentation I’m giving. Someone just responded with ‘eat less sugar’ and while that’s obviously why we’re doing the presentation in the first place, it’s so frustrating to hear all the time. 

“I wish people understood how complicated and difficult it is, and how much it impacts on all aspects of your life. It’s not just about medication, it’s all the little things that are constantly on your mind. If my foot suddenly feels sore, should I go and get it checked just in case? Or if I’ve had a headache for a few days, do I need to get that checked?"

When it comes to helping other people understand what it’s like living with diabetes, Bethany is happy to be open about her experiences to those who are genuinely curious.

“I don’t think you can ever stop people being inquisitive and if people ask me about what I’m doing, for example if they see me injecting, I’m happy to talk to them. But when people are judging before they’ve even tried to understand – that’s a lot harder to deal with. I always say ‘ask me about it, don’t tell me about it.’

“Diabetes is different for everyone – if I have type 1 and you have type 1 it doesn’t mean our experiences will be the same and I think people forget that, even people who have diabetes.” 

Bethany’s final reflections are on how we can help more people to understand diabetes.

“A lot of what I read is either so simple that it’s made for people who have never heard of diabetes, or it’s so complicated that only people with diabetes will really understand it. That middle ground where you can give friends or family or people you work with something that tells what they really need to know to understand would be so helpful. They don’t need to know everything, but I think they need to know more than they do now.”