Is there anything healthcare professionals can do differently to help people with diabetes who are finding things tough? And what can people with diabetes themselves do? Esther shares her perspective as a diabetes specialist nurse with 18 years' experience.
Over the years I have had the privilege to hear many stories of the experience of living with diabetes from the people that know. Having diabetes from the people that know.
Many of these are heartening stories about overcoming a diabetes challenge in the face of adversity, and how people have drawn strength and support from others. But sadly, there have also been too many where people report the challenges can feel too hard to overcome, particularly when faced with stigma from the public or their healthcare professionals. This is very disheartening for someone who has spent nearly all their working life trying to help ease the burden for people living with the condition.
Diabetes is relentless, it’s part of you 24/7 and there is no opportunity to take the day off without potentially facing some consequences. Yet, there are so many myths surrounding diabetes and its treatment, which can lead to people living with diabetes being questioned and judged for the way they live their lives.
According to research conducted at Stanford university people with diabetes (particularly those using insulin to manage their condition) make 180 more decisions each day about their health than someone without diabetes. So, the frustration of someone asking if that means you have to eat loads of sweets or questioning your diagnosis because you are not fat, must at times be truly overwhelming.
Listening and hearing
These judgements can get boring, exhausting, and be hurtful, adding to the already large burden of living with diabetes and increasing the distress some people feel. And remind me that we still have so much to do to raise awareness of type 1 diabetes, clarify the differences between type 1 and 2, and ensure people have some understanding of the impact living with this condition can have on both physical and mental wellbeing. That is why it is so important for us all to both listen to and really ‘hear’ the stories of individual people.
When faced with distress of any kind, people may make less rational decisions or care less for themselves which may lead to thinking that ignoring diabetes might be the way forward. However, in my experience this is often the path with the most difficult terrain and is eventually more challenging to navigate for the person living with diabetes.
It is fair to say that healthcare professionals are all individuals with their own history, background, personal circumstances and ways of communicating, and whilst likely their intentions are good, they don’t always provide the service people living with long-term health conditions need.
I’ve lost count of the number of times people living with diabetes tell me they’ve been ‘told off’ by their diabetes professional for some aspect of their lives when their diabetes targets have not been met.
Setting achievable goals
But people with diabetes only spend approximately 3 hours per year with their diabetes healthcare professional. Perhaps this time could be spent listening and working with people to set individual achievable goals rather than criticising when and where things have gone awry.
The good news is that there is excellent work being done in healthcare and diabetes research to understand the needs of people living with diabetes and make advances that can make a difference. This includes development of wearable technology such as insulin pumps and continuous glucose monitors, immunotherapies for those newly diagnosed or at risk of type 1, islet cell transplantation and artificial pancreas systems.
Motivation without criticism
There is also growing awareness within healthcare settings of the need to ask people about the impact diabetes has on their life and how they are coping in general not just about their numbers. There are a variety of resources to help with setting short term goals to achieve long term aims and keep motivation without criticism. And it is my greatest hope that this becomes the reality in every diabetes clinic.
If you are finding your diabetes hard going, there are some practical things that might help you to ease the burden.
At your diabetes appointments, if you feel criticised or not listened to by your healthcare professional, then let them know. Healthcare professionals may not be aware of how they come across.
Spend some time before your appointment thinking about the things related to ‘your’ diabetes that are important to ‘you’ and ask for the help, advice, and support you need to achieve your aims.
There is often a whole team of people working within diabetes healthcare and you are entitled to request support from an individual with the appropriate expertise. So, if you have an issue with your diet ask to see a dietitian. If you are experiencing diabetes distress or burnout, ask to see a psychologist.
And if you are having practical issues such as problems with lipohypertrophy (lumpy injection sites) causing erratic swings in blood sugar levels or issues in the workplace, ask to see a diabetes specialist nurse. If you are not sure what type of professional can help you, explain your issue and ask – do you have a service/person that can help with this?
If all else fails and you are unable to develop a rapport with your main diabetes care provider or simply don’t feel supported, then request a new care provider.
At the end of the day, you are the person living with diabetes and are putting in the hard work, so you are entitled to feel like your healthcare professional is working with you and supports you.
Be kind to yourself
No one is perfect and managing diabetes is far from easy. If you have a difficult day try not to let it spill into the next one.
Don’t think of your blood sugars as ‘good’ or ‘bad’.
This infers judgement, instead use ‘high or low’ or ‘within target’. If every day is a constant battle with your sugar levels, revisit some of the basics – us humans are creatures of habit, so it’s easy for example, to head for the same injection site routinely without realising that these areas are becoming scarred and lumpy leading to erratic absorption of insulin.
Set yourself small achievable targets
You may want to eventually run a marathon but start with a short run twice a week and build up from there – this way you can retain motivation with small regular wins. For example, if you don’t ever test your blood sugars, its unlikely that you will be able to suddenly start and then maintain testing at least four times a day so don’t try. Start testing once a day for the whole week which is more realistic, and build it up to four times over a few weeks.
Help them understand how you are feeling and are affected. I hear many positive stories from people who’ve made that leap and now (sometimes for the first time) feel listened too, not judged and no longer alone.
And personally, I would like everyone everywhere to be mindful that whilst diabetes is a part of you that needs nurturing, it does not and should not define who you are.
Esther is one of our senior clinical advisors. Passionate about diabetes care, she joined Diabetes UK in 2021. She became a diabetes inpatient specialist nurse (DISN) in 2002. To help improve diabetes care in hospitals across the UK, she started the DISN UK Group in 2004, retiring as chair in 2021.