Instagram and insulin: How social media helps and hinders parents of children with Type 1 diabetes
“I felt fear and terror and very frightened of what was to come followed by a shocked numbness”
Heather Jackson
When Heather Jackson’s eldest son Joseph was diagnosed with Type 1 diabetes in May 2019, a month after his third birthday, her whole world was turned upside down.
Heather, who lives in Saltburn-by-the-Sea, North Yorkshire, thinks it may have been chickenpox that triggered the auto-immune response and began the rapid decline to diagnosis.
Following four trips to the GP, mum-of two-Heather knew something wasn’t right and demanded Joseph’s blood glucose was tested. His reading showed 32. A ‘normal’ person’s is between four and seven two hours after eating.
Joseph was immediately sent to hospital where he was diagnosed with Type 1 diabetes; an auto-immune condition that can happen at any time of life when the pancreas stops producing insulin.
Heather said: "I felt fear and terror and very frightened of what was to come followed by a shocked numbness where I was like 'tell me how to do this and we'll just deal with it, everything's going to be fine'."
Around 29,000 children in the UK are living with Type 1 diabetes and according to Diabetes UK the number of new diagnoses is increasing by 4% every year.
Parents of children diagnosed with Type 1 suddenly become responsible for helping their child adjust to a completely new way of life, following a complex care plan to manage both the short and long-term impacts of the condition.
This can create a huge physical and emotional burden for those caring for children diagnosed and research shows parents report feeling overwhelmed as well as being prone to suffering from stress, anxiety and depression.
The unexpected nature of a diagnosis is challenging and during the pandemic many families were unable to access face to face support due to lockdowns so instead sought help and advice online using social media.
Heather's story
Heather, who runs a property management company with husband James, first accessed online support around six months after son Joseph’s Type 1 diagnosis.
The 39-year-old said she found blogs by women who described their experiences of what it meant to parent a child who lives with chronic condition.
She would often comment and thank the author because she felt like she was reading something which really resonated.
As well as the obvious physical burden, Type 1 diabetes adds a massive mental impact to people living with or caring for someone with the condition.
According to research by Stanford University, people with diabetes have to make an extra 180 decisions per day compared with people without it, therefore it’s no surprise people feel overwhelmed by the relentlessness of managing the condition.
“One of the things I definitely remember was feeling overwhelmed by the idea that everyone else’s life was trundling along and mine had completely changed. I felt very alone and isolated,” said Heather.
Heather, who is also mum to five-year-old Noah, said that after three weeks of joining the private Facebook group ‘Parents of children with Type 1 diabetes in the UK’, she left it.
“Although, I can completely understand the benefits of this type of group for some people, I found it generally quite aggressive and negative.
“I found the culture seemed to be more around telling others what to do and how to do it and I was very conscious of people seeking medical advice and that didn’t sit well with me. It felt very unsafe.”
Heather said what she wanted to garner from social media was emotional support for the grief and sadness she felt at the loss of her son’s health.
She joined Instagram in 2019 not long after Joseph’s diagnosis and began following accounts of parents of children with Type 1 who documented their journeys using the platform and in 2022 she set up a specific account @hkjacks84 to talk about her own experience.
“On Instagram, I felt like the culture seemed to be more supportive and understanding of people’s positions,” said Heather.
“I definitely feel part of a group of people who are all connected because they are in the same struggles and also the same triumphs.
“The people who comment on my posts probably say similar things to what people in my social circles say but because I know these people are living it, it’s like I can accept it more.”
An Instagram post from Heather's account showing her with a group of mums of other Type 1 children who she met through the platform
An Instagram post from Heather's account showing her with a group of mums of other Type 1 children who she met through the platform
Heather revealed how she met a small group of people through the platform who now talk regularly through Whatsapp and have even met up a couple of times.
“When we met for the first time it was very cathartic as we all got chance to tell our own stories and were able to relate to each other’s experiences,” she said.
“Although we connected initially as parents of children with Type 1 it has now moved into that space where there’s 50/50 chat in terms of diabetes and normal everyday life chat.”
Heather, who has suffered trolling as a result of her account, believes that on social media “you have to be the master of your own destiny”.
“If you find yourself scrolling and you are feeling upset by what you see or feel like you are spiralling into negativity, then ultimately you are in control of that and must decide to take a break,” she said.
“There are times when I am very active on Instagram but likewise I know my limits and when I need to just leave it.”
Despite initially trying to engage with the trolls she ended up blocking them.
“Some of the comments I received were around ableism and said my experience wasn’t valid because it’s my son who lives with the condition, not me.
“I don’t profess for a second to understand what it means to live with it but I am clear on my account that it talks about the experience of parenting a child with Type 1.”
Heather said the trolls appeared to be adults who live with Type 1 so she tried to engage with them and asked what she could be doing differently or why her experience as a parent wasn’t valid.
“I realise now that was futile as these people just wanted to express vitriol in way that is upsetting and impacts you.
“Now, I accept messages but if it’s negative I will just delete and block and that’s my way of managing it.”
Claire's story
Claire Ross has used social media to seek support as well as documenting her own journey as a parent of a child with Type 1. Claire’s daughter Sophie, now 13, was diagnosed three years ago in July, 2020, during the pandemic.
Mum-of-two Claire said she felt relieved that there were other people out there going through the same experience.
“I know that I can put a post on [social media] at 3am when I’m up sorting Sophie’s blood sugars out and that there’s somebody else up who is dealing with the same thing,” she said.
“It’s like we’re all in this same club together and it’s about feeling heard, I guess. You might have a medical professional who has spent years working in diabetes care but they aren’t living with it or learning about living with it.”
Although Claire, 40, highlights benefits to using Facebook groups as a support network she also acknowledges that it can be a trigger for feeling overwhelmed too saying that some people who use the group can come across judgemental.
“There shouldn’t be any judgement, just support. Some people can be so headstrong with their opinions. That’s where I feel I have to take a step back because I can’t be doing with that.”
Claire, who lives in Suffolk with Sophie, husband Craig, 41, and 11-year-old son Oliver, uses her Instagram account @mum.to.a.type1 to document her journey through life living with and caring for a child with Type 1.
“I was actually in a garden centre and Sophie was hypo [low blood glucose] and sat on a bench treating the low and I just posted a picture on Instagram and that’s how it started really. I started using hashtags and then realised there was this whole type one community out there on Instagram. I use it mostly to educate and also show that this is what our life is like now.”
Claire explains one of the impacts of using the platform to document her journey is anxiety and that she sometimes feels anxious if she posts a question in a story and it receives no response.
“I can’t cope with that and I often end up deleting the post. I feel like I would rather have not asked the question in the first place. That’s the difference between Instagram and Facebook. You know you will get a response on Facebook – even at 2am.”
A video slideshow of a typical day in Claire's life as mum to her Type 1 diabetic daughter Sophie
A video slideshow of a typical day in Claire's life as mum to her Type 1 diabetic daughter Sophie
Claire, who works as a senior employment retention adviser for Suffolk Wellbeing Service, said she also feels pressure at times to keep up with posting and that sometimes she will “disappear for a week or so” and take a break if it all gets a bit too much.
“If I’m feeling a bit fragile then I know when to take time out. Some accounts post multiple times every single day and I don’t know how they do it.”
The effects of using social media on mental health is widely documented with one study finding that reducing social media use to 30 minutes a day resulted in a significant reduction in levels of anxiety, depression, loneliness and sleep problems.
However, research also shows that online peer networks can actually be beneficial for people in terms of feeling less isolated, learning coping strategies and being able to share information or emotional support.
“My account is very honest,” said Claire. “I don’t think you could do it without showing the ups and the downs but I try where I can to show that life still can be lived and that Sophie still does all the fun stuff.
"Life doesn’t just stop because you have this diagnosis, it’s all about your mindset and for me that’s what this online community is about – trying to be positive and raising awareness.”
Claire and daughter Sophie
Claire and daughter Sophie
"Life doesn’t just stop because you have this diagnosis, it’s all about your mindset"
Sophie just days before she was diagnosed with Type 1 diabetes
Sophie just days before she was diagnosed with Type 1 diabetes
Ian's story
Ian Gaskell said he found the parent support groups on Facebook “invaluable” when it came to finding out information when his 17-year-old son Connor was diagnosed in June 2015 aged nine. In fact, he found it so helpful, he became an admin for the UK Diabetes Dads Facebook group.
“It was good to have so many people experiencing the same and a place to go to ask questions,” said Ian, 46. “Now Connor is older and more experienced we have adapted and use the T1 with Teens and the Uni Type 1 pages for support with the next part of his journey.
“I run a couple of dads Whatsapp groups and also the UK Diabetes Dads group on Facebook along with a few other dads and we find sometimes that dads need a different group to let off steam.”
Ian, who is a recruitment manager from West Bromwich, said he finds social media “a real support mechanism as there is always someone around no matter the time of day to offer support and advice”.
Ian said the support he has received on social media changed his mindset and approach to managing the condition.
“I would never had tried DIY looping if it wasn’t for the support on social media either from those in the dads group who had done it, such as Kev Winchcombe who was a massive early adopter and campaigner of DIY or from the more specialist pages for looping,” he said.
DIY looping is a process by which someone 'hacks' their insulin pump using a device which allows it to communicate with a continuous glucose monitor to make insulin adjustments automatically.
“Without those [support and specialist groups] we wouldn’t have the control or insight we have now. The Type 1 community is just amazing,” added Ian.
Tara's story
Seeking support on social media, however, is a personal choice. It can be quite daunting to join groups full of strangers to ask questions and give advice despite the fact they are going through a similar experience.
Tara Humphrey remembers searching for sites on social media in the hospital when her daughter Tahlia was diagnosed and didn’t really know what she was looking for but was just trying to find out what Type 1 diabetes was and what it meant for her daughter.
“I didn’t really use Facebook, it’s not my natural default. I found this support group and joined it but then I just felt like it wasn’t helpful,” she said.
“Understandably, people shared their fears and concerns on the platform. For me it was information overload and I remember looking at it and feeling quite stressed so I left and didn’t go back on it.”
Tahlia was diagnosed on Christmas Eve 2015 when she was five-years-old. Tara, founder of THC Primary Care which works to support and improve care in the community, said she felt “shocked and scared” when Tahlia was admitted to hospital with DKA.
DKA or Diabetic ketoacidosis is what happens when your body doesn’t have enough insulin to allow blood sugars into your cells for use as energy. It is a serious complication of Type 1 diabetes that can be life threatening.
Symptoms can include excessive thirst, frequent urination, nausea and vomiting, stomach pain, weakness or fatigue, shortness of breath, and confusion and can often happen when people first develop Type 1 and have not yet been diagnosed.
Tara, who lives in Whitstable, Kent, with husband Mark and has two other daughters Tia, 15 and 13-year-old Laila, said she can clearly see benefits to accessing support through social media, but it’s not something she personally has engaged with.
“Having dedicated social media support groups allows people to connect virtually with other people in the country that have similar experiences,” she said.
“Advice also comes fast which is good but the negative for me was many people went on social media when they were in a period of crisis, and with everybody’s situation being slightly unique to them, it was hard to take generic advice from people who do not know your child, or trust that their advice was going to work for me."
Tara, 42, said although she uses Instagram she has never previously seen it as a platform for support in parenting a child with Type 1.
“I’m actually addicted to Instagram though I saw it as more static and not a community as such but I’m sure there is a community there as I’ve stumbled across people like @missdiabetes who creates diabetes comics and advocacy art.”
Tara views social media as playing more of an educational support role, making her aware of things rather than connecting her to people sharing similar lived experiences. She highlights the app Digibete as a resource she finds supportive from a peer-led perspective and explains she has used Twitter to share part of Tahlia’s Type 1 journey including a video Tahlia produced for Digibete about her transition to secondary school.
“Sometimes I feel like I miss out as it’s interesting that other people reach out and form groups and the downside from me not using social media for support is that I miss out on the social element.
"I've had some lovely comments from sharing Tahlia's video. It's good to share experiences but I am very clear to say 'this is my experience' and I am not saying it will be the same for everyone.”
Tara Humphrey with husband Mark and daughters Laila, Tia and Tahlia (front)
Tara Humphrey with husband Mark and daughters Laila, Tia and Tahlia (front)
Simon's story
For Simon Hooper, otherwise known on Instagram as @father_of_daughters, his approach of using social media following his daughter Marnie’s diagnosis was very different to his wife’s.
Simon, 40, said whereas he tends to bury his head in books and get the information he needs from reading facts online, his wife Clemmie was the one who engaged in social media as the first port of call and found the support groups for parents on Facebook.
“While Clemmie takes information in from social media and digests it, my journey with diabetes on social media is more about outwardly pushing information,” said Simon.
“Once I’ve learned about something I’ll try to build encouragement or raise awareness and I think one of the things I’ve been able to do through educating myself over these last couple of years is to build awareness around Type 1.”
Simon said that when Clemmie first posted in the Parents of Children with Type1 Diabetes in the UK Facebook group, another mum posted that her daughter, who was the same age as Marnie, had also been diagnosed that day. As a result the pair made contact and the two girls are now close friends who meet up regularly.
Marnie was diagnosed in March 2021 aged 10 and it was midwife Clemmie who began to recognise the symptoms and realised something wasn’t quite right.
“The initial shock was pretty traumatic for all of us,” said Simon. “Her levels were extremely high and she wasn’t far off collapsing with DKA. When she went into hospital they were pretty surprised she was still standing to be honest.”
Simon, who has more than 800,000 followers on Instagram, described going through a “very rapid learning curve” as soon as they got the diagnosis and said a lot of it was about “feeling our way through stuff to start with”.
Simon using his Instagram account to raise awareness of fundraising for Diabetes UK
Simon using his Instagram account to raise awareness of fundraising for Diabetes UK
“The amazing thing is it must be more than one hundred people who have come to me and said 'I spotted the signs because of your post or story and we were able to get the help we needed' which is immensely gratifying and it also makes the effort that I put into raising awareness all worthwhile.”
For management consultant Simon, who is also dad to Anya, 16, and 7-year-old twins Ottilie and Delilah, the way he creates content on the subject is very matter of fact and has taken the approach, where possible, to make it a positive experience.
“I’ve tried to be honest and there are some low points that come with that. If they’re lying on the floor having a hypo where they’re slurring their words that’s really scary stuff," said Simon who has raised funds for Diabetes UK.
"I’ve talked about the honesty of the first three to six months where you’re really learning about the experience, where it is a challenge and to try help people understand the complexities involved in that.
“Trying to re-join the normal world after you’ve been diagnosed with Type 1 is hard but you can still go and do everything, you just need to plan a little bit more.
"Hopefully, that gives people a bit more courage to just go and live life, just be prepared but don’t feel like you have to hold back because we certainly know Marnie hasn’t. It’s just part of her life now.”
Professor Partha Kar, consultant and national diabetes advisor for NHS England
Professor Partha Kar, consultant and national diabetes advisor for NHS England
Claire Ross, mum of Sophie, 13, who has Type 1 diabetes
Claire Ross, mum of Sophie, 13, who has Type 1 diabetes
Becky Reeve, head of professional relations in Diabetes at Sanofi
Becky Reeve, head of professional relations in Diabetes at Sanofi
Diabetes experts and burnout
Diabetes advocate Professor Partha Kar, consultant and national diabetes advisor for NHS England, describes social media as a "double edged sword" when it comes to Type 1 diabetes.
He explains how it can be an important tool for opening up opportunities for people to connect as it “widens the breadth of interactions” but also highlights the risk of information overload which can potentially encourage ‘burnout’.
Diabetes burnout is when parents and carers feel overwhelmed or exhausted by the demands of supporting a child living with Type 1 diabetes.
The distress can manifest itself in a number of ways such as feeling so consumed by diabetes that it’s all you focus on, regularly feeling low, angry or numb, arguments about managing the condition and even potentially avoiding situations linked to your child’s diabetes such as avoiding clinic appointments.
Claire Ross, who like many other parents and carers, has suffered burnout and describes it as “something that tends to creep up on you, without much warning and can feel crippling”.
“As a carer to someone with type 1 diabetes, you get used to feeling tired and running on empty. I believe this is why burnout tends to hit us very hard and very quickly – because we don’t notice the usual warning signs as clearly,” added Claire.
“It makes you feel like the worst version of yourself. You are exhausted beyond anything you can ever imagine. The smallest of tasks feel like the biggest, your brain feels foggy and you lose all enthusiasm for life in general.
“On top of this you are still responsible for keeping your child alive and the realisation that a slight mistake can hold severe consequences is a lot of pressure for someone who can’t think straight.”
Professor Kar said that social media is changing the narrative of support being under-recognised and under-utilised.
“Every platform has its own nuanced way of how it’s used and what for and I think it’s about parents finding the platform which works best for them,” he said.
“People have different ways of using it, some just go to look and seek information, others document their own experiences; it has grown around peer support and has opened the door for people to see what can be done on a virtual platform.”
Professor Kar points out that despite the benefits there is the risk of parents becoming overwhelmed with access to so much information.
“Social media is not necessarily regulated so the risk is you may not end up getting the right information you need. Medical opinion is a very dangerous place.
“You need a degree of training before you can give medical advice but social media doesn’t have any restrictions for that so that’s what worries me as people could end up getting advice that could actually land them in harm. That’s how social media works right? Everybody believes they can be an expert.”
Becky Reeve, head of professional relations in Diabetes at Sanofi, one of the first companies in the UK to produce insulin agrees, saying it can be quite worrying when people post medical advice on social media as everyone who has diabetes is different and what works for one child could have disastrous consequences for another.
“It concerns me that some people may not use any sources of information from professional services and take the advice on social media as gospel and there’s no guarantee anyone will correct it or advise that person to seek advice from their medical team,” said Becky.
Research has shown that talking to other parents in a similar situation who really understand what you’re going through can help you normalise your feelings and reduce stress.
Professor Kar said it’s vital for parents to take advantage of that support but also have mechanisms in place to take that timeout if they feel they are approaching burnout.
“Type 1 diabetes is overbearing full stop; the concerns and worries that come with having a child who has the condition,” he said.
“It can be incredibly overwhelming so it’s important you know how to take a break. In your quest to learn more and more don’t burn yourself out because your child will need you.
“I don’t think people really understand what Type 1 diabetes is or its impact, including clinicians and this is where social media sits as the parents’ posts on these platforms should give an insight to the clinicians as where the challenges lie.”
Clinical psychologist Dr Vicky Elliott agrees that overuse of social media in this capacity can lead to increased anxiety, feeling overwhelmed and burnout.
She said it can often be difficult to filter relevant information which may lead to exhaustion and difficulty processing your own thoughts and feelings.
Dr Elliott explains that anxiety can be potentially triggered by parents using social media as a support method through comparing their child’s progress/prognosis to others or being exposed to health-related fears or other challenges they had perhaps not considered.
“Exposure to distressing stories or posts which may generate anxiety, particularly for parents who are already worried can be a result of seeking support through social media. It can be triggering for families who maybe struggling or close to burnout if they are exposed to ‘success’ stories and are comparing themselves to others, which parallels social media use in life generally.
“At the point of diagnosis, it can be unhelpful to be exposed to lots of conflicting information from families who are several years down the line. As humans, we naturally seek to make sense of things and like to have a ‘story’ to guide us and help us predict the future, however I would advise caution as not all children will have the same experience.”
Dr Elliott, who has worked in Paediatric Diabetes services in South Warwickshire, and has also been working as a senior Paediatric Psychologist in Leicestershire for over 10 years, recognises that social media offers a “natural and convenient way to connect with people in the smartphone age” as well as encouraging peer support through mentoring and education.
The Diabetes UK Clinical Champion added: “It can allow people to dip in and out of support in an easier way than traditional face to face support groups and is incredibly powerful in that it allows people to be in control of how much or how little they access support.”
"Sharing lived experiences, helping to normalise challenges and feeling connected to others are huge benefits in helping newly diagnosed families to connect emotionally with their own journey"
Dr Vicky Elliott
Dr Vicky Elliott
The issue of digital health exclusion
However, unfortunately not everybody has access to this kind of online support.
Research shows that people living in poverty are at risk of digital exclusion and that this has been exacerbated by Covid. People who fall into this sector are therefore those most at risk of exclusion from digital healthcare are often those already experiencing the biggest inequalities in access to healthcare.
Dr Tomas Griffin, a lecturer in medicine who specialises in Diabetes at University of Limerick’s School of Medicine, said there is the assumption that everyone has the access to technology required to use platforms such as Facebook and Instagram.
“We shouldn’t forget how you ensure inclusion,” he said. “You would assume there’s a social economic gradient in terms of access to technology and so those of lower socio-economic status probably don’t have easy access to this sort of support. We need to think about how they can join in peer support because everyone should have this opportunity and not be disadvantaged.
Dr Tomas Griffin
Dr Tomas Griffin
“The concept of using online technology to share experiences can be very helpful. I can’t imagine what it’s like to find out your child has Type 1 diabetes but being able to share your story with someone who knows exactly what you’re talking about, who has been there, done that, and can give reassurance that everything’s going to be absolutely fine is invaluable.”
Dr Griffin said that some parents will just go to their child’s three or four clinic appointments a year; and that is the only contact or support they have.
"They don’t know about the groups and so they don’t know what they are missing out on because they don’t know what exists," he added.
“How do you get more people to know about peer support? Through posting about it on social media and using these platforms as an educational tool.”
What is Diabetes UK doing to help?
Healthcare and research charity Diabetes UK is working to tackle those inequalities in diabetes outcomes experienced by those from deprived communities.
Diabetes UK Type 1 Lead Charlotte Austin said that around 50% of all children in the UK diagnosed with Type 1 live in the bottom quintiles of deprivation and that the parents of these children are unlikely to be those accessing social media for support.
“The only way a lot of families get support is from their clinic appointments as they don’t tend to seek information or support online,” said Charlotte.
She echoed Dr Griffin's comments, saying: “Most do have some access but it is limited. Perhaps they don’t have enough data to be able to use it to explore support online which could lead to them meeting up with other families going through the same experience. It’s digital inequality and a result of the society we live in.”
Charlotte said that Diabetes UK is working to bridge the gap between the support parents get during clinic appointments and the rest of the time and one aim is to create a peer support network in a bid to help dissect all the information available for newly diagnosed families.
“What I’ve seen is parents wanting all the information immediately which can easily lead to anxiety and burnout. There is a level of intensity with trying to find out everything at once which is impossible because it’s a never-ending change.”
Charlotte Austin, Type 1 Lead for Diabetes UK
Charlotte Austin, Type 1 Lead for Diabetes UK
Charlotte, who lives with the condition herself, describes what she refers to as the ‘cycle of grief’ and explains how social media has changed the way parents not only get support but also perceive Type 1 diabetes.
She talked about the initial shock before moving on to the stage where you want to feel some kind of hope that is then followed by a desire to focus on the practical nature of the diagnosis before moving through other transitions and coming back full circle where you end up then providing support to others.
Charlotte, who trains as a professional wrestler, said a peer support model “really needs a bit of everything”.
“Support on social media is great because it’s very responsive in a time of need but it can still feel like you’re alone because it’s just people on the other side of the screen,” she said. “People are often quite different in face to face environments and it’s interesting to see the difference in interaction.
“There’s a lot of pressure in the parent community and whether this is peer pressure or pressure from your healthcare professional saying your child needs a better ‘time in range’, there can be quite a lot of judgement which isn’t helpful.”
Alex's story
Alex Hunter described the pressure to navigate a new way of life as a “huge learning curve” and said the most difficult thing to process was the fact that she needed support.
Alex’s son Barney was diagnosed aged six on Valentine’s Day 2020 – just weeks before the country went into lockdown.
“I just wanted to find support wherever I could get it so I joined Parents of children with Type 1 diabetes in the UK and a couple of other groups but I quickly felt it became ‘too much’ said Alex, a graphic designer.
“In the early days I found it helpful because I had so many questions and it was incredibly supportive with so many messages saying ‘really sorry, hope you’re ok’ and that was lovely but very quickly I found I was spending too much time on there.
“I found it hard because I was just starting to get to grips with things and then seeing posts about things going wrong was just really worrying. I couldn’t handle the amount of difficulties people were having.”
After three months, Alex, who lives in north London with studio manager husband Simon, 41, stopped accessing the Facebook groups and as a result of seeing a therapist, realised that it wasn’t working for her because she wasn’t able to stop scrolling and switch off.
“You kind of have to draw a line of what’s healthy in terms of taking the information you need versus reading all the difficult stories people are sharing. Simon would often say to me ‘Alex, you need to put your phone down. Give your brain a rest, it’s not helpful’ and he was right.”
Alex said she always compared that first bit of the journey to grief and to begin with found scrolling a coping mechanism.
The 44-year-old follows some specific diabetes accounts on Instagram but said she finds she has more control over what she interacts with and can be more selective with the type of content she wants to engage with.
“I follow @diabe_tech and he posts about his own issues with Type 1 but the way that he spins things is quite positive and he does it in a way that appears genuinely helpful. He is constantly in touch with the latest technology and knows what is coming next and I find that positive and exciting in that there’s a bit of light at the end of the tunnel.
“At the beginning it really did feel that heavy and I just couldn’t see how life could be normal but now I know that’s absolutely not the case and we’re doing fine.”
Alex likes the level of control she has with Instagram in terms of what comes into her feed and has only had positive experiences in terms of reaching out to people on there.
“It’s nice to know there’s a community on there but at the same time I am very aware of what I can find triggering and how I need to react to that.”
Alex with husband Simon and son Barney
Alex with husband Simon and son Barney
"Unless you’re living it, you can’t possibly understand and it can be all encompassing. The people that know exactly how it is are other parents"
Alex with husband Simon and son Barney
Alex with husband Simon and son Barney
Amanda's story
Amanda Epps’ story is slightly more unusual than most. Now a lead nurse for diabetes and endocrinology at East Kent Hospitals Trust, Amanda started training as a diabetes specialist nurse (DSN) after her brother was diagnosed with Type 1 aged 28 in 2006.
Three years later the 42-year-old mum-of-three started working on a diabetes ward and her family went through a second diagnosis – Amanda’s sister, then aged 22, was found to have Type 1.
In 2015 when Amanda was nine months into her role as a DSN at Medway Maritime Hospital in Kent, her then 7-year-old son, was diagnosed with Type 1.
“I was absolutely devastated,” said Amanda. “He wasn’t in DKA, we had caught it early, but it was a shock. We had been at a children’s party and he doesn’t even like fizzy drinks but he had been downing lemonade and fizzy orange and I thought ‘what’s going on?’”
After testing his bloods on a meter Amanda had at home, his blood glucose levels read 27 and then just ‘HI’ after a second attempt which means the blood glucose is greater than 27.8 - the highest number the meter is able to display.
“My husband’s asking ‘what does that mean?’ and I said ‘It means we’ve got to get to the hospital’. His bloods on arrival were 33 with ketones of 3.3 and he was whisked off to A&E and they said ‘it’s Type 1’.”
When your body doesn't have enough insulin to allow blood sugar into your cells for use as energy, your liver breaks down fat for fuel, a process that produces acids called ketones. When too many ketones are produced too fast, it can be dangerous and cause DKA.
But Amanda’s story doesn’t stop there. In November 2020 while at work on World Diabetes Day and testing blood sugars as part of the ‘Find the missing millions - test one drop’ campaign, she did a finger prick test herself and it read 14.
“I freaked out a little bit and then I was like, ‘that’s not supposed to be like that’. I wouldn’t have even known, I probably wouldn’t even know now as I hardly need any insulin. The next day I did a finger prick HBA1C and it came back at 45 which is pre-diabetes.”
Amanda thought it could be Type 2 diabetes as she had put on some weight during lockdown but a blood test showed her antibodies were positive and revealed slow onset diabetes previously known as LADA.
“I’m still not needing hardly any insulin so it’s a weird place to be because how much is my pancreas still working and how much longer is this likely to go on? I just don’t know.”
Amanda, also mum to two daughters aged 20 and 23 said although she receives face-to-face support from people she works with, she has also found a lot of support on Twitter.
“There’s a hashtag GBdoc (Great Britain diabetes online community) that people were using at the time my son was diagnosed and I met a lot of people through that because I like to see what people are doing with exercise and things like that.”
Amanda joined the Facebook group for parents of Type 1 children but found herself answering people’s questions rather than asking them. “It wasn’t so much of a support to me,” she said “but I think it’s very useful for other parents.
“There’s definitely a role for social media support as there’s a national conference that is really good for parents and people living with Type 1 because it’s essentially a whole community of people. You only find out about it on social media though so if you don’t use Twitter or Facebook then you wouldn’t find out about it.”
Amanda was also part of a group of healthcare professionals who during lockdown when people didn’t have normal access to healthcare support, set up a Twitter account called Diabetes 101.
It was used to answer questions about things such as whether people with Type 1 should be shielding or information about how to manage your diabetes if you test positive for Covid.
“Because everyone was stuck at home social media became a godsend and we used it as both an educational and support tool to provide advice based on government recommendations.
"We made it fun though and did anything to try and get people engaged and offer some support because that's what people were missing out on at that time.”
The pandemic has clearly driven a move towards digital healthcare and encouraged more opportunities for people to seek information, education and support through social media.
Becky Reeve, who has worked in diabetes for 21 years and has vast experience observing and communicating with those living with Type 1, said social media offers what medical professionals can’t.
Becky Reeve, head of professional relations for diabetes at Sanofi
Becky Reeve, head of professional relations for diabetes at Sanofi
“Practical advice such as tips on changing your infusion set, what to do when you go on holiday or what to do if you’re wearing a ballgown and have an insulin pump – this is all information that medical professionals can’t give you because they don’t know and this kind of support from a community of people who have been there and done it, is invaluable,” said Becky, head of professional relations in diabetes at Sanofi.
“Unless these kind of groups exist where people are sharing new learnings, people tend to accept what they are told in their clinic and may not push for things like new technology. This means that we will never change the health inertia we have in the UK within the profession and it’s important to challenge the system."
Becky said not only is the support on social media important for that reason, but not many healthcare professionals have personal links with Type 1 and therefore can’t really understand what it’s like to live with a child who has diabetes.
“They don’t understand the guilt and the overwhelming anxiety that’s associated with normal day-to-day living so being able to communicate and listen to people who are going through exactly the same thing is incredibly beneficial,” she added.
“The emotional side of living and caring for someone with Type 1 diabetes is huge and never goes away.”
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