A senior HR manager whose school days involved him secretly taking 'insulin injections under his desk' in an effort to keep his type 1 diabetes hidden from classmates is now on a mission to “change the conversation”. Daniel Newman, 36, who lives in London, was diagnosed with type 1 diabetes, an autoimmune condition which causes the level of glucose in the blood to become too high.
Following his diagnosis at the age of 10 years old, Daniel had to inject himself with insulin twice a day in order to manage his glucose levels. He tried to hide this from his friends and classmates because he just wanted to 'fit in and be accepted'.
Due to the way his peers treated him and fears of being “judged”, Daniel did not manage his condition well as a teenager. This later contributed to other health complications, including chronic kidney disease.
This was a period in his life that caused him 'to carry a lot of guilt' around for many years. However, after “learning to forgive (himself) for what has happened”, Daniel now wants to draw on his own experiences to educate others.
He joined awareness groups such as The Diabetes Football Community (TDFC) and hosts his own podcast. He uses his platforms to share information about the condition which affects approximately 400,000 people in the UK, including 29,000 children.
He said: “My aims for the future are just to continue to challenge and to talk about diabetes stigma. There will be people living with diabetes, probably going through the same thing that I went through, and just worried about the stigma, worried about the acceptance.
"These things do stay with people, but it’s important to change the conversation. You might see that diabetes is the punchline in somebody’s joke when, actually, no health condition should be a punchline in a joke.”
According to the NHS, those who have type 1 diabetes need to inject themselves with insulin every day to manage their blood glucose levels. Daniel remembers his first injection vividly, describing it as “terrifying” because he “didn’t like needles”, but he had to continue injecting himself with insulin twice a day following his diagnosis.
As none of Daniel’s friends at school had diabetes, he said he feared “being judged” and did his utmost to conceal his condition. He said he would inject himself with insulin under the table in class, go to the toilet “so people wouldn’t see”, or he would avoid injecting himself altogether because he could not find the right time, or the privacy, to do it.
“It was just that fear of being judged, that fear of standing out and being different to everyone else,” Daniel explained. Reflecting on his formative years during which he hid his condition, Daniel added: “Regardless of that period of time, I think all teenagers just want to fit in, because you want some level of acceptance.
"But when you add diabetes into the mix, then that comes with its own baggage and its own stigma.” According to a survey commissioned by global healthcare company Abbott, which had 1,500 participants from the UK including 500 people with diabetes, nearly 75% of Britons living with diabetes have viewed negative commentary towards their condition on social media, television and online.
In Daniel’s case, he said he was called “sugar boy” and was told that type 1 diabetes is “the easy one” while he was at school. He said he just “wanted to fit in with (his) friends”, but “the embarrassment and shame” he felt, along with the name-calling, had a detrimental effect.
“You do feel a level of – particularly the ‘sugar boy’ – embarrassment and shame… and the stigma links to isolation as well,” he said.
“You don’t just see them as harmless words. Those are words that carry weight and have meaning and they can be quite damaging.”
At the age of 16, Daniel said he hit his lowest point and he started experiencing what he described as “diabetes distress” and “diabetes burnout”. He said he felt “frustrated, defeated and overwhelmed by diabetes”, and started to withdraw from managing his condition in an appropriate manner.
Speaking about the constant monitoring of diabetes, Daniel said: “I just felt like I had had enough with managing the condition because it’s relentless. It just keeps going and going and going.
"So I said to myself, ‘Do you know what? You need insulin to stay alive’, so I’ll just take insulin to stay alive.
“I won’t check my levels. I won’t do any of that, I’ll just take insulin to stay alive.
“At the time, as a teenager, that logic is great. But obviously, being older and looking back, you realise that logic doesn’t work at all.”
Due to complications with his diabetes, Daniel was diagnosed with chronic kidney disease in 2013. He was the recipient of a live kidney transplant in 2018 and is now managing this with immunosuppressants and anti-rejection medication.
He was also diagnosed with diabetic retinopathy – caused by high blood sugar levels damaging the back of the eye – and has had multiple laser treatments in each eye, along with a vitrectomy operation, to help improve his vision. Daniel said he felt “deflated” as these diagnoses were most likely linked to the management of his diabetes in his younger years.
He said he felt “so alone” and that he had “failed a test over a condition that (he) didn’t ask for”. “I carried a lot of guilt around, which I think many people who are diagnosed with complications whilst living with diabetes do,” he said.
“It’s always the ‘If only I did this, if only I did that, if only’, and the reason why you think ‘if only’ is because you can get messages from your healthcare professionals, saying ‘If you don’t look after yourself, then this will happen’. But what it doesn’t take into account is the mental and emotional side.
"And that’s the part which is really big when you are diagnosed with complications… (it’s about) learning to forgive yourself for what has happened in the past. It's about understanding that you can’t change it.”
Daniel explained that changing his mindset and focusing on personal development and self-improvement, by reading, researching, and listening to podcasts, has been fundamental in helping him to accept his conditions and educate others. He feels that people need to have more open and honest discussions about diabetes to take away the stigma and, he hopes that, by drawing on his own diagnoses and by not “glamorising” them, he can “use (his) voice and (his) experience to help others”.
Daniel set up an Instagram account, @t1d_dan to share updates on his diabetes. He was also a member of the NICE Diabetes Update Guideline Committee until September 2022, and he has even set up his own podcast, The Talking Type 1 Podcast, to talk to guests who have diabetes and other health conditions.
He has joined TDFC which is a network of people who all have diabetes and who play football, praising the organisation that has “no judgment there”. Daniel said he will continue to engage in conversations, and his advice to anyone who has been diagnosed with diabetes is: “Try not to panic and try not to be overwhelmed.
"There will be good days and bad days, but just try to do your best every single day. Remember that you can do it and never, ever lose hope.
“You aren’t the only one because there are other people who have experienced what you have experienced, who are going through what you are going through, and you can see some of their experiences and draw inspiration from them. Just having that conversation takes away the stigma of living with diabetes and changes the perspective.”
To find out more about Abbott’s Let’s Change Perspective campaign, visit the website here.
