True Stories

Diabetes: Its Individual

09 July 2009

Rebecca Johnson was diagnosed with type 1 diabetes during her first semester of university, when she was 17 years old. Now 25, Rebecca has lived with the condition for less than a decade but has developed a deep understanding of diabetes management and comfortably pushes its boundaries. Rebecca scuba dives, travels and sails, all activities which people with diabetes often avoid.

Before Rebecca’s diabetes diagnosis was confirmed, she was very sick and was experiencing all the common symptoms of type 1 diabetes, but thought she might have glandular fever.

“I had all of the symptoms, every single one of them,“ she recalls, ”I was tired, had blurry vision, an incredible thirst that couldn’t be quenched and I was going to the toilet all the time. I would sit at the back of the lecture theatre and couldn’t read the white board. Everything was so blurry, I thought I needed glasses.”

Rebecca was experiencing these symptoms for about 6 weeks and lost 11kgs during this time. Just before she was diagnosed, her symptoms became more severe and impossible to ignore. “I got really sick,” she explains, “I couldn’t get out of bed. I would get up to brush my teeth and then go back to bed.”

Finally Rebecca was taken to the doctor by her mother, where it was quickly confirmed that she had type 1 diabetes. She was sent straight to Princess Margaret Hospital, where she spent a challenging five days in hospital sharing a ward with young children. Her doctor didn’t want her to go to an adult’s hospital because seeing people with complications such as amputations would be frightening for her. While in hospital, Rebecca received extensive diabetes management education. When she was released, the reality of her diagnosis sunk in and she felt a state of permanency for the first time in her life.

“Getting out of hospital I realised that I have to do this for the rest of my life,” she says, “Before being diagnosed with diabetes I had never experienced a sense of permanency - I mean when you’re sick you’re meant to get better, but I was told I would have this for ever.”

Rebecca believes that getting diagnosed with diabetes at 17 rather than as a child has both its benefits and its disadvantages. She feels fortunate that she didn’t miss out on some of the freedoms of being a kid, such as children’s parties and lollies. On the other hand, she found diabetes management challenging when all of her friends were experimenting with drinking and starting to going out clubbing.

In her first year of living with diabetes, Rebecca remembers feeling overwhelmed and being in denial about her condition. She didn’t really understand how it all worked and found management much too difficult. She stopped eating out at restaurants and she began to look at food completely differently. Suddenly, everything needed to be counted – how many carbohydrates, how much fat and is it low GI?

After about a year she shifted her attitude to the other extreme. She began reading every book and article she could find on diabetes and had all of her family members sending her any newspaper or magazine clippings they found about it. Rebecca thinks that she became obsessed with it but, at the same time, she learnt a lot. She began to realise that diabetes is a condition that needs to be managed by the individual. While doctors and health professionals provide vital support, it’s up to the person with diabetes to live with it.

“One of the hardest things about diabetes is that you don’t get a day off from it,” says Rebecca, ”It is there every morning when you wake up and every night when you go to sleep.”

These days Rebecca feels that she has a very sound understanding of her diabetes and knows her body extremely well. She goes scuba diving and travels overseas, not allowing her diabetes to restrict her interests. Diving in particular is a large part of her life and she has her Dive Masters, allowing her to lead dives. She is proud that she can dive successfully, despite being told that it wasn’t possible. She has to remain aware of her diabetes while underwater, taking glucoshots down with her and having established a signal that she uses to alert the other divers if her blood glucose levels are dropping.

Similarly, Rebecca does not let her diabetes stop her from pursuing her travel interests, instead just planning carefully. While travelling overseas for two years, Rebecca often relied on the kindness of strangers to help her get through difficult moments but she maintains that she never experienced any major problems. Every time she would arrive in a new city, a care package full of test strips would be waiting for her courtesy of her mum.

Now at 25 years of age, Rebecca is continuing with her studies and is half way through her Masters in Public Health. She worked at Diabetes WA for a number of months and is passionate about diabetes awareness, education and effective management.

Rebecca never turns down an opportunity to talk about her experiences and triumphs, as well as her desire for people in the community to better understand the condition. Rebecca pushes the boundaries but at the same time she takes her condition very seriously.

Her advice to other people with type 1 diabetes is to seek out advice, educate yourself and read everything you can about it. “Don't be afraid to experiment, be open minded, learn to read your body and what works for you. Push the limits, always and don't leave the house without jellybeans!”


Can Your Story Help Others?
Your story may inspire people newly diagnosed with diabetes, or help to increase community awareness about the condition. Contact Kate Bourne on 9325 7699 or via email kate.bourne@diabeteswa.com.au