What it’s like to live with type 1 diabetes: Queenslander Jessica Masters shares her story
Wednesday 11 July 2018
Most 10-year-olds spend their time learning how to master multiplication and navigate pre-teen friendships. Queenslander Jessica Masters spent her 10th year learning how to measure her blood glucose level and give herself insulin injections.
Diagnosed with type 1 diabetes 23 years ago, Jessica has spent most of her life managing her condition, while doing her best to not let it hold her back.
Type 1 diabetes, or T1D, is an autoimmune condition that impacts those diagnosed for life. In people with the condition, the immune system attacks the cells in the pancreas responsible for producing insulin, a hormone that enables the body to move energy providing glucose from the bloodstream to body cells. If left untreated, high levels of glucose in the blood, or ‘hyperglycaemia’, cause damage to the body’s blood vessels, nerves and organs.
To manage their condition, people with T1D have to monitor their blood glucose levels throughout each day, and use needles or a pump to inject insulin into their bodies.
We spoke with Jessica about life with type 1 diabetes, how having T1D has changed her life, and what she wants people to know about the condition.
What was it like to have diabetes as a child and teen?
As a child, my mother always tried very hard to make sure I didn’t feel too different from other children. She sheltered me from a lot of fear and tried to make me feel special instead of different or alienated. That was really important to how I then grew with diabetes and accepted in into my life.
From day one, I was adamant that I wanted to do all my own injections and finger pricks, which back then was 2-3 needles and 2-3 blood sugar checks a day. When I got to go back to school after my diagnosis and hospital stay, we did a fun little presentation to my class to explain what Type 1 diabetes was (and that it wasn’t contagious!).
As I got older my insulin types changed and I wanted stronger control, so I would end up having around 5-8 needles a day and check my blood sugar around 7-10 times. I’m thankful now that with an insulin pump and a constant glucose monitor I don’t need to inject or prick anywhere near as much!
How does having diabetes affect your relationships with those close to you?
When a child is diagnosed with diabetes, really their whole family is as well. There can be many changes, choices to make and new information to be learnt which effects more than the individual.
This doesn’t necessarily change as an adult either. Diabetes effects so many of our everyday choices, from where to eat and when to exercise and rest, to where to live, the support we need and what to do in an emergency, that our close relationships inevitably are shaped in some way by diabetes too.
Living with diabetes, even on great days, can be exhausting, so it’s always been important to surround myself with family and friends who are understanding and supportive.
How does having diabetes affect your adult life?
In every way. There are no breaks from diabetes and whether I like it or not, it is a huge part of who I am and who I continue to grow to be.
My blood sugar and insulin levels are affected by everything from food and exercise to emotions and sleep levels. So, it ultimately effects nearly every little decision I make each and every day.
Luckily though, with advances in technology and choosing to make routine healthy eating and exercise choices, the condition can be very manageable and the burden can be made a little lighter.
How do you manage your condition now?
Today I have an insulin pump and a constant glucose monitor (cgm) which have enabled me to manage my condition the best in all my years of diagnosis. Currently in Australia, cgms are only subsidised for persons living with type 1 diabetes under the age of 21, so it is very expensive and I have to make sacrifices to keep using it. However, it provides a lot of safety and quality of life I wouldn’t get otherwise.
The cgm also has a phone app which enables my husband and family to track my blood sugars and receive an alarm if my blood sugar drops too low and I need assistance. This is particularly helpful during the night to avoid hypo induced comas, or worse.
Plenty of exercise, healthy eating and mindfulness are also a big part of my management approach to positive living with type 1 diabetes.
Is there anything that type 1 diabetes stops you from doing?
In the T1D community there is a saying: ‘Diabetes won’t stop me’. Those living with the condition post photos or write stories of events and moments that may be challenging but they didn’t give up just because they have diabetes - such as skydiving, sports careers, trail hiking, multi-day marathons, camping off the grid, and travelling the world. It’s important to still live your life, just make sure to prepare - pack your diabetes supplies, plenty of hypo food, some common sense and tell someone where you’re going!
Is there anything you don’t think you would have experienced if it weren’t for diabetes?
I think that any one effected with a chronic illness forms a special outlook on life, you have to really, and with this comes a unique sense of humour for coping with the tough moments, and a strong sense of understanding and empathy for others in similar situations. I think with type 1 diabetes comes resilience, strength, adaptability, compassion and a strong sense of community.
How is your diabetes expected to progress in the future?
Living with type 1 diabetes means constantly remaining hopeful despite the fear of what the future might hold. We’re all told that a cure is just around the corner, but some have been waiting decades as diabetes is such a complicated condition. In that time though, many advances have been made which can help us manage the condition in a way which should see us now live much longer, healthier lives with less likelihood of complications.
I feel very fortunate to be complication free after 23 years, not all of which were filled with perfect control.
What support systems do you find useful in helping you manage your condition?
I’ve found the type 1 diabetes community online to be a wonderful start. They have a very strong online presence, both nationally and internationally, for anyone dealing with type 1 diabetes in their lives. The networks are filled with others in similar situations, T1Ds and their carers/supporters, that can be connected with both for information or catch-ups/local events.
What do you wish other people knew about diabetes?
There is a strong push in our community for there to be a clearer distinction (perhaps in name) between type 1 and type 2 diabetes. It can be very difficult to hear about ‘diabetes’ in the media so much, both positive and negative stories, only to discover they are usually always only about type 2 diabetes.
From a personal level, I would like everyone effected by type 1 diabetes (and 2) to know they’re not alone. This condition, while sometimes tiring and testing, is manageable and shouldn’t stop you achieving your dreams. There are a lot of great support networks out there which can make living a healthy, positive life with type 1 diabetes very achievable.
Learn more about diabetes
Many thanks to Jessica Masters for sharing her story with us. You can follow Jessica's story about balancing life with type 1 diabetes on her Instagram @masteringme.