Voices from the community: First-hand testimonials about diabetes and mental well-being
Listening is the first step to understanding what others are going through. As part of our “Connecting what counts between diabetes and mental well-being” awareness campaign for World Diabetes Day, we reached out to members of the diabetes community to learn what it’s really like living with this condition that never takes a break.1
Here are six voices out of the half a billion of people living with diabetes2 describing, in their own words, just how much impact the condition has on mental well-being. These voices belong to six very unique people with vastly different upbringings and experiences, but who are equally intent on bravely and openly discussing life with diabetes on a variety of social media channels so that broader society can develop the empathy and understanding that people with diabetes so desperately need.
Phyllisa Deroze, USA, LADA (Latent autoimmune diabetes of adults)
Phyllisa is a passionate and active global diabetes advocate. She began blogging after being diagnosed with type 2 diabetes in 2011. Some years later, however, she found to have been originally misdiagnosed, being latent autoimmune diabetes in adults (LADA) her proper diagnosis. In 2012 Phyllisa founded Black Diabetic Info with the aim of increasing cultural-competent diabetes information. Phyllisa’s motto is "Diagnosed Not Defeated."
Diabetes is 24/7 and you don't get any days off. Until you're diagnosed, you might not understand how exhausting it is for us and, through awareness, people might be more compassionate. The moment that has the biggest impact on my mental well-being is when I check my blood sugar first thing in the morning. That number has the ability to change my mood. (...) I learned to start the day with a spirit of gratitude BEFORE checking my blood sugar and that helps tremendously. Sometimes I need a break. I need to go a few hours without thinking about diabetes. I've learned to take those small breaks and come back with a renewed thought process. I wish my break could be longer than a couple of hours, though.
Hanna Boëthius, Switzerland, type 1 diabetes
Hanna was diagnosed with type 1 diabetes 38 years ago at the age of 2. She is a patient leader, international speaker and action taker with a Master’s in Science in Diabetes and a background in nutrition and coaching. Hanna, who has Swedish and Finnish origins and currently lives in Switzerland. She is passionate to find motivational and inspiring ways to bring about a change in healthcare.
Diabetes is a relentless condition to live with, it’s there 24/7, 365 days a year and it never takes a second’s break. This is an unimaginably heavy burden to carry, and easily affects our mental health. After 38 years of living with T1D, diabetes burnout comes and goes in waves; sometimes living with T1D is easier, sometimes heavier. The teenage years were the worst! What helps me is making sure I keep an overall lifestyle as healthy as I can; eating nourishing foods, drinking plenty of water, moving my body daily, keeping up my meditation practice, and so on. If I feel healthier holistically, the mental health burden of diabetes eases, too.
The Diabetic Survivor, UK, type 1 diabetes
The social media presence of the Diabetic Survivor, is a visual designer who was diagnosed with type 1 diabetes 26 years ago, aims to raise discussion in order to connect with, raise questions, and empower the diabetes community. The idea behind his design and passion: bring some joy and happiness to the diabetes community touching certain aspects of the 'diabetes world'.
To open the conversation about it. Mental health carries a heavy social stigma that does not allow us to seek help when we must need it. I found out I had diabetes when I was almost 15. Adolescence and diabetes are not a great combo! Took me years to move on from self-stigma and stigma in general. I used to feel like I deserved to have diabetes, which made me feel down all the time. Nowadays (after 25+ years with #T1D) I just go for the basics: a short walk every day with a bit of discipline. If I can call a friend or loved one at the same time, much better! I also make sure to connect with others in the diabetes community. We all know that there are certain things that only another PWD can relate to.
Jamie Knight, UK, type 2 diabetes
Ever since Jamie was diagnosed with type 2 diabetes in 2018, taking regular walks and runs, including successfully finishing multiple marathons, became his passion. A big part of his motivation is to help himself and others to break the stigma of type 2 diabetes.
Diabetes is relentless, an ever-present voice whispering into your ear about blood sugars, medication, spikes, food & drink choices etc – it can be overwhelming when you are not 100% focused. Real-life events take over and you can so easily lose your focus and, before you know it, you have taken a few steps backwards. People with diabetes not only need well-being support but also the skills to recognise and accept when they are struggling. For the first time since being diagnosed in 2018, I have struggled this year. Diabetes itself and other life factors made my condition much more challenging to manage and I have felt very negative about my normal routines. That said, I have managed to keep going, even when my motivation and discipline have not been at their best. The most important thing is to recognise what is happening and find a way forward. Since diagnosis, exercise has been my way of not only controlling my diabetes, but also managing my mental health. I walk, I run and occasionally do some strength training. Being active helps me to clean the negative thoughts from my head and also is a massive part of my motivation, challenging myself to go further and faster, culminating so far in participating in the 2022 London Marathon.
Amber Clour, USA , type 1 diabetes
Amber was born and raised in Norman, Oklahoma. Twenty-one days after her eighth birthday, she was rushed to the children’s hospital where she spent two weeks learning how to live her new life with type 1 diabetes. Amber’s life has been filled pursuing her passion for art, advocacy, non-profit ventures and travel.
When diagnosed with type 1 diabetes, most of the attention is on how to manage your new life with this disease, but rarely is the mental health component addressed. I've described much of my younger T1D life as "suffering in silence" and sought out therapy and began my blog to help address the impact mental health has on my overall diabetes management. Diabetes affects mental wellbeing on a daily basis. For example – nighttime blood sugar battles can leave anyone anxious and cranky; packing for a trip and making sure to have plenty of supplies can cause anxiety; going on a first date and deciding whether or not to share having diabetes can be stressful; and carb counting and dosing adequate insulin is exhausting. I use meditation, deep breathing, journaling, exercise, and affirmations on a daily basis. During the really rough patches, I reach out to my friends in the T1D community. Sharing my situation with someone who "gets it" helps immensely because they have walked a day in my shoes.
Ana Rodrigues, Brazil, type 1 diabetes
Ana is sharing her life with type 1 diabetes on her social media channels advocating to raise awareness about living with the condition.
Receiving a diabetes diagnosis is difficult. The condition requires us to take a stand. In addition, mental health has a direct impact on blood glucose control. I already had diabetes burnout. I have had diabetes for 13 years and having to think about it all the time eventually exhausts the mind. What helps me the most is therapy. Having friends with diabetes also eases the burden of the diagnosis.
We want to thank everyone for sharing such personal insights. These first-hand experiences help to reinforce the profound link between diabetes and mental health. It’s important to raise awareness and talk not just about the physical side of diabetes but also the emotional challenges that people with the condition constantly face. By making the invisible visible we at Roche Diabetes Care would like to break down barriers and stand for people with diabetes so that they get the help and support everyone deserves.
1 The following views, thoughts, and opinions expressed herein are personal to the speaker and do not necessarily represent the views, thoughts, and opinions of Roche. This content is not, and is not intended to be, relied upon as medical or mental health advice nor is it intended to be relied upon for any medical/mental health diagnosis or treatment. Roche is not providing medical or mental health advice. Always seek the advice of a physician or other qualified healthcare professional regarding any medical/mental health questions you may have. Do not ignore medical/mental health symptoms, medical/mental health advice previously obtained from a physician or other qualified healthcare professional, or delay in obtaining medical/mental health advice based upon this content.