The Women’s Centre for Health Matters, with the support from the AIDS Action Council, surveyed…
This National Diabetes Week, HerCanberra’s Erin Cross speaks to fellow type one diabetic Courtney Pitson about the reality of living with this often misunderstood condition.
Imagine making an extra 180 decisions every day, when one wrong choice could mean the difference between life and death. This is reality for 23-year old Courtney Pitson.
“Everyone talks about being at the stage where you accept a diagnosis… I’m never going to get to a point where I’m like, ‘I’m okay with this’ because I’m just not.” she says.
Although she was too young to remember, Courtney’s life changed dramatically when at two years old, she was diagnosed with type one diabetes.
She knows she was endlessly thirsty, drinking gallons of water a day and infinitely more moody than an average toddler. Most concerning of all, she had heard stories of how her family watched in horror and confusion as her small body lost vast amounts of weight.
“My dad is a type one diabetic and so he kind of knew the symptoms and signs. There was a little bit of denial but it was there…then it was when I was at childcare, as they caught me drinking out of the toilet, they were like ‘Alright, something is seriously wrong with this girl,’” Courtney says.
“Mum rushed me to the hospital and called dad…I was diagnosed, at that point I don’t remember any of it. My poor dad, I think was very, very emotional,”
“I’m just fortunate that I didn’t die.”
Courtney is just one of the 125,000 people in Australia diagnosed with the chronic autoimmune condition. Occurring when the pancreas stops making insulin in the body, the current causes of type one diabetes are still unknown and unlike type two or gestational diabetes, the disease is life-long, without cure and can be life-threatening.
After living with the disease for 21 years, Courtney admits that she still doesn’t like to think about the impact her diagnosis had on her family, because the guilt would be too much.
According to Diabetes Australia, blame, shame and guilt are commonly felt by type one diabetics as they try to navigate their day to day lives and ride the highs and lows of living with the disease.
This year, National Diabetes Week runs from 11-17 July and focuses on challenging diabetes-related stigma, giving voice to the real impact diabetes can have on a person’s mental and emotional wellbeing.
For Courtney, the emotional and physical drain is never-ending.
“There’s not a lot of awareness for how difficult a chronic illness really is. There’s a lot of sleepless nights and then exhausting days,” says Courtney.
“You grow up very very quickly and people say ‘Oh you’re so strong, you’re so resilient and as nice as that is, it’s actually really hard. I’d rather not be strong, I’d rather not be resilient, I’d rather not be that mature for a 12-year-old, that’s trauma and unfortunately with this disease it’s just trauma day in, day out, you never get a day off.”
Growing up, Courtney says there was never a moment where she felt normal. While her parents endlessly advocated for her and she advocated for herself as the face of the ACT Juvenile Diabetes Research Foundation (JDRF), the sense she was missing the fun and frivolity of her childhood was never far from her mind.
If she left her health unchecked she could suffer from nerve damage, kidney disease, eye disease, gangrene and other severe complications. If she had a bad day, she could suffer a seizure or slip into a coma. While her family tried to help her manage her diabetes, Courtney is unlucky enough to be one of the only type one diabetics in the world to suffer from small strokes when her blood sugar goes too low.
“I remember spending time in the hospital because I had a massive stroke. I remember spending the holidays in the hospital because, again, I’ve had a stroke,” she says.
“I distinctly remember one time, I woke up and we were meant to be going to Questacon, my sister, my dad and I, and I couldn’t sit up…that happened more than once where I would have strokes and I would feel so guilty because I would ruin the plan.”
Finally at the age of 11, after dealing with endless doctors and charities who ‘truly don’t understand’, Courtney decided she wanted to be normal and stopped caring for her diabetes altogether.
“I don’t think, certainly in my experience, that I got the help I needed with mental health. I went off the rails, it probably started in Year Six… I didn’t want to be a diabetic anymore and I wanted to be cute and I wanted to be fun and to be normal,” Courtney explains. “So I stopped doing finger pricks and I stopped using my insulin pump.”
“I finished school when I was 17, and I could count on my hands the amount of times my friends in my whole high school life saw me do a blood test, saw me do a needle. It was so minimal, I had absolutely no desire to look after myself.”
Emotionally exhausted and overwhelmed by the demands of her diabetes, Courtney sunk into a never-ending circle of rebellion and guilt as she tried to live a normal teenage life.
“I definitely wish I had more awareness of mental health services that I could have accessed at the time. The hospital certainly told my parents about free counselling but I didn’t want to go and nobody explained to me why it would be beneficial. And nobody explained to my parents why it would be beneficial,” she says.
Invisibility, mental health and emotional scars
Statistics show that type one diabetics are twice as likely to develop mental health issues such as depression or anxiety.
According to Diabetes Australia up to 50% of diagnosed diabetics are thought to have a mental illness which in turn increases the likelihood of developing long-term complications as they struggle to deal with the everyday tasks of managing the chronic illness.
The focus on control, the constant monitoring and the emotional and physical extremes of day to day life can take its toll. Courtney admits living with type one diabetes for 21 years has had an extreme impact on her mental health.
“I have so much unresolved trauma from this disease, in addition to everything else going on in my life. I don’t remember huge chunks of my childhood, which as I get older, makes me sad. But I think that comes down to being a diabetic and having memory loss from having strokes that they never picked up on,” says Courtney. “Now as an adult, I’m trying to process the trauma and deal with the trauma and deal with the fact that I’ve blocked out 95% of my childhood.”
“My mental health has taken a huge hit. I think anyone who’s a type one diabetic would have to admit that, because how could it not?”
Even while she tried to live her normal life, diabetes always sat at the back of Courtney’s mind. There was a constant promise to herself that she would do better, she would try, until her feelings of anger and sadness would rise again.
It wasn’t until she had an extreme hypoglycemic attack while travelling to Thailand for her 21st birthday, collapsing in Singapore during the layover, that Courtney decided to do something.
“Even though I’ve had mini-strokes and stuff before, I came to terms that this is the rest of my life and if I don’t do anything now, I’m going to die,” she says. “I still cannot explain how I feel about it. It’s so terrifying that it can happen at any point in time…I think it just shows how aggressive this disease can be sometimes.”
The emotional impact of her experiences and the lack of support she has felt as a type one diabetic in the Canberra community is something Courtney is incredibly passionate about. While she will never stop advocating, she says she is tired of always being the one to speak up.
This National Diabetes Week, Courtney says she wants the community to know that while the disease is invisible, the emotional scars it leaves are very real.
“It can happen to anyone,” she says. “I wish people were more aware of the symptoms and how dangerous they are and how rapidly your life will change.”
“There’s a projected idea that being a diabetic is okay, that it’s not that hard, but it’s actually really hard. I wish that people knew how hard it is and how it really does change your life forever.”