Mon 24, Sep 2018
Brisbane-born model Anja Christoffersen was only 17 when she first walked in Amsterdam Fashion Week. Three years later, she’s also focusing on another kind of modelling—being a role model for young people with chronic bladder and bowel conditions. Anja was born with VACTERL Association, a disorder that affects many body systems. While she’s been incontinent her entire life, she hasn’t let it get in the way of pursing her dreams. Anja speaks to Kasia Kosidlo about her challenges and ambition to help others.
Could you tell us a little bit about yourself?
To look at me you would think I am a normal, ambitious 20-year-old without a worry in the world. Behind the scenes, I have daily struggles with chronic health issues. I am affected by vertebral abnormalities, a single kidney and a ‘plumbing problem’. When I was born, I couldn’t get food into my body or get it out. At the top end, I had esophageal atresia, and a fistula with my trachea – meaning there was no join from my mouth to my stomach; food and water would be channelled directly into my lungs. This was repaired at birth. On the bottom end, I had cloaca where my intestine, urethra and duplicated reproductive organs came out in one channel. At birth, I first had a colostomy and vesicostomy, then a full reconstruction at seven months old where they created the three separate openings. In terms of bowel function, my diagnosis meant that I didn’t have an anal sphincter, muscles, rectum or nerves, so I’ve been incontinent my whole life.
What has this diagnosis meant for your day-to-day life?
When I was younger, I was in and out of hospital with chest and urinary infections, chronic constipation as I do not have natural bowel contractions, further medical imaging, treatment and surgeries. At one year of age, I began doing daily rectal washouts [enemas] to induce bowel contractions and give me social continence. Otherwise, my bowel was like a tap that was turned on and would flow constantly or totally off and blocked up. Even with these washouts I would still have accidents in day-to-day life. I also face some chronic pain and other ongoing issues related to my bowels, reproductive and urinary systems.
How do people react when you share your story?
Ever since I was very young, I’ve been open about my story with lots of my friends and family. Thankfully, people have been really understanding and I haven’t faced any bullying when I have been open about it.
I also believe it is important to help raise awareness, especially with the growth of social media where everyone seems so perfect. It creates an unrealistic expectation for young people. I think being open about my health challenges educates others about the silent battles young people like me face. It also provides a space where others do not feel so alone in the fact that they too have struggles.
Have you met other people with similar health issues as you?
When I was growing up, the survival rate of VACTERL wasn’t as high and incontinence was something that was considered a taboo subject. It wasn’t discussed as openly as it’s beginning to be now. I used to wish for a positive role model talking openly in the media.
Last year, I decided to reach out in some of the online Facebook communities and share a bit of my story. I received an overwhelming, positive response and I realised that my story was helpful to others with similar conditions. And there was a lot of people out there. Social media is a great communication tool for people all over the world, particularly those who live in countries that may not have access to the medical care we do in Australia or the support networks. Connecting online gives people hope and the knowledge that they are not alone.
How important is a positive and confident attitude?
I was lucky to have the support of my family and my friends, especially my mother and my godmother as I was growing up. They didn’t smother me in sympathy nor let me feel sorry for myself for long. When we would discuss my condition, they always said, “it doesn’t matter”, “it doesn’t have to define who you are” and “it doesn’t have to have an impact on your quality of life and the dreams that you can achieve”. I grew up with the belief that I could do whatever I set my mind to, despite my congenital condition.
Of your career so far, what has been a highlight?
My biggest highlight would be walking in Amsterdam Fashion Week the day before my 18th birthday. It was something that I really wanted to do. So I set it as my goal of 2016.
My goal now is to model more overseas and keep working in Australia. I am also focused on using that platform to become a role model for others who suffer from chronic health conditions such as VACTERL Association, imperforate anus, incontinence and many more.
What would you like to say to other young people growing up with incontinence issues?
I’d say to them that as difficult as it may at times seem, stay positive and be confident. If you feel comfortable, be open about your condition so other people are aware and can support you when needed. Don’t let incontinence define you. Don’t let it stop you from doing what you want to do. Don’t let it cause you to isolate yourself and not leave the house. Be brave. There is always a way to better manage incontinence. Seek help to find that way!
In the video, Anja discusses living with incontinence and how she has come to reshape her thinking around her condition:
“I made the decision to not be defined by my diagnosis but in fact redefine what it means to be disabled, chronically ill and incontinent.
In a world where we are sharing more than ever, we are still missing those important conversations that break the stigma and shame surrounding incontinence and certain disabilities.”
Get a copy of Anja’s new book ‘Behind the Smile’ https://www.vacterl.com.au/behind-the-smile