health

"I had to walk in my bikini with my scars": What it's like to be a model with incontinence.

Continence Foundation of Australia
Thanks to our brand partner, Continence Foundation of Australia

What do you see when you look at this photo of Anja Christoffersen?

Anja Christoffersen. Image: Supplied.

A beautiful 20-year-old Brisbane born model to start. But while they say a picture is worth a thousand words, there are things that Anja's photo doesn't tell you.

It doesn't tell you as a child, she wore plastic heels, princess dresses and sometimes a tiara.

It doesn't tell you during her teenage years, she loved science and maths and turned her sights towards becoming a doctor.

And it doesn't tell you that she was born with VACTERL association, a lifelong condition that caused her to lose bowel control and the ability to swallow, as well as breathe properly.

But at just five-hours-old and seven-months-old, Anja had two major surgeries, one on her air pipe and food pipe and the other a pelvic reconstruction, in order to maintain and manage her condition. Without the surgeries, she would not have survived.

As a result of these surgeries, Anja has difficulties swallowing, breathing and at times has problems with severe reflux. She further battles chronic pelvic pain and does not have natural muscles, nerves, rectum or anal sphincter, that has meant complete and untreatable bowel incontinence.

Watch Anja speaking about how the Continence Foundation has helped her. Post continues after video.

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"I have had to manage this with bowel ‘washouts’ (enemas) almost every day since I was one-year-old," Anja, who is a Youth Ambassador for the Continence Foundation of Australia and spokesperson for the Laugh Without Leaking awareness campaign, tells Mamamia. "I see multiple specialist teams for management of all my VACTERL issues, and still spend a chunk of my life in and out of hospital."

And while Anja didn't let VACTERL association get in the way of the simple things that most other kids don't even think about, like going to school, attending school camps, or having sleep overs, it undoubtedly presented barriers.

Anja (left) and her mum (right). Image: Supplied.

Anja says she managed her incontinence through her bowel management regime of daily enemas throughout school which were able to prevent most accidents, yet they still happened.

"Obviously this was incredibly embarrassing but I learnt to pick myself up and have the courage to go back to school the following day.

"I found that any exercise or sports created issues for my bowels. When I had an accident I often had to just go home to get cleaned up, and spend the remainder of the day trying to get a handle on the incontinence so I would be ready for the next day of school.

"As a female I found it to be easier in high school, as everyone was having periods so we would commonly ask each other to check the backs of skirts for any little ‘accidents’, and this gave me peace of mind."

Aside from impacting her education, Anja says VACTERL association definitely had an influence on her relationships too.

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"When you are sick and lying in a hospital bed, you find out who loves you and who has genuine care for you pretty quickly. The ones I hear from and check in are usually genuine, and those who disappear until I am better are usually fake," she tells Mamamia.

"When I returned after being sick for a few days, I felt like an outsider as there was so much I had missed out on. I always felt out of place as I had a better relationship with adults than my peers, as most of my interactions as a child were with doctors and medical staff rather than people my own age."

"When you are sick and lying in a hospital bed, you find out who loves you and who has genuine care for you pretty quickly." Image: Supplied.

"Dealing with so many medical things behind the scenes, and so much that is deemed ‘socially unacceptable’ or stigmatised – like someone over the age of five having bowel accidents, was very isolating, especially in my late teens.

"It was challenging to maintain friendships as when my health was bad, I found myself cancelling things last minute. One moment I can be well, and the next I can be bed ridden.

"It is difficult for people to understand that things can get so bad so quickly. So when they see me out and well, and I cancel on something a few hours later, it doesn’t make sense to them."

But when it came to her education in particular, Anja says it all came to a head when she was in Year 11.

"I became very unwell and the doctors struggled to diagnose one thing that was having such a detrimental affect on my health. I was unable to sit up for long periods of time as I was so overwhelmed with pain and exhaustion.

"The doctors could identify little issues going on – I had ovarian cysts, misplacement of my urethra as I grew after my reconstruction as a baby, viruses and Ross River fever – however nothing that could explain the bigger picture of what was going on.

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"By this stage, I had already missed almost a term of school at such a crucial time and had no proper diagnosis or time frame for recovery."

"I was unable to sit up for long periods of time as I was so overwhelmed with pain and exhaustion." Image: Supplied.

Anja was faced with the dilemma of how to continue, should she drop out, repeat the year, or do staggered subjects and graduate the year after her peers?

"I was heartbroken at the time, that missing such a small part of such a large academic journey would disadvantage me so greatly," she tells Mamamia.

"I made the decision to leave school as I wasn’t confident to continue without knowing when or if I would recover."

Anja says she was lucky enough to gain admission to Griffith College to study Certificate IV Tertiary Preparation Program (a Year 12 equivalent) at 16 years old.

Being able to do much of her course independently allowed her time to take care of her body and invest in getting healthier, which Anja says was crucial in allowing her to gain a modelling contract.

"If I had stayed in high school and done what I thought would be most socially appropriate, I never would have had the opportunity to excel in my modelling career so early.

"On completion of the Certificate IV Foundation program I was awarded DUX, and then decided not to take up my university offers and pursue my passion of modelling."

"I then decided not to take up my university offers and pursue my passion of modelling." Image: Supplied.
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It was after Anja was invited into an agency that she was asked about her scars.

"I lifted my shirt to expose the scars on my stomach - from my colostomy, vesicostomy and my pull through (pelvic reconstruction) surgery, as well as the one under my arm where they had reconstructed my food and air pipe at birth.

"I was told in a gentle and kind way that I would never be able to model at the level I wanted to because of the scars on my stomach."

Anja says this news was conflicting for her for two reasons.

"Firstly, I had never seen my scars as something ugly as they told my story, and I was grateful for them as they represented the surgeries that allowed me to survive.

"Secondly, I had seen in the media that the modelling industry was becoming more accepting of different bodies, scars and more - that diversity was the new beauty and the modelling industry wanted that.

"Unfortunately the stance of the industry at that time was not what was being portrayed so positively in the media."

Yet it wasn't long before Anja found a boutique modelling agency in Brisbane that was in its second year when she  courageously sent her photos in.

"I was invited to come to the casting and I had to walk in my bikini with my scars on full display and have some photos taken. Within 48 hours I was signing a three month development contract with the agency."

"Within 48 hours I was signing a three month development contract with the agency." Image: Supplied.
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"As soon as I had my foot in the door I took every single opportunity that came my way, and chased other opportunities. I was then invited to extend for 12 months, as they were so pleased with the work I was producing and the feedback they were getting from clients."

However as much as Anja loved modelling, her incontinence did cause her concern.

"For all shoots and runways, we needed to be in little nude g-strings so I had no protection against accidents or anywhere to hide," she tells Mamamia.

"I am missing bones in my sacrum that affect pelvic nerves as well as my lack of anal sphincter and muscles to control my bowels, so I would often only find out that I had an accident when it was running down my legs.

"As you can imagine, it was something that was always in the back of my mind. I just had to prepare with my bowel management before a shoot or show, and just hope that my body would cooperate.

"I was always very professional, and never wanted anyone to know that I had any illness as I did not want to be disadvantaged by it.

"I didn't want them to not book me again or to make any exceptions for me that the other models didn’t have. I was determined to get booked on my own merits, not as the token disabled model."

Anja's efforts eventually led her to Amsterdam where she spent eight weeks chasing her modelling dream and ended up on an international catwalk.

"It was this pinnacle moment for me where I knew I really could achieve whatever I set my mind to, and when I knew I had a valuable story to tell others about courageously following their dreams despite any setback in life."

"I didn't want them to not book me again or to make any exceptions for me that the other models didn’t have." Image: Supplied.
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Despite all of Anja's efforts however, when she returned from her international work she had a shocking year for her health. As a consequence, she made the decision to seek a more stable income and decided to pursue real estate.

"I had many hospital admissions and three abdominal surgeries in eight months, including one major one that I wasn’t sure I would survive," she tells Mamamia.

"After my recovery not being as easy as I had hoped, I realised that I couldn’t really hold down a traditional job as there was not enough sick or annual leave for me to attend medical appointments alone."

It was at this point Anja began working with her mum in their family real estate business.

"It had been really fulfilling working as a family and has given me the opportunity to also study and attend speaking engagements - building my passion career as a medical advocate, author and motivational speaker."

Anja says the incredible support system of family, friends and most of all, her mum, that has helped her deal with VACTERL association throughout her life.

"My mother is my hero. From birth to now, whenever I am in hospital she is by my bedside advocating for me.

"As a child I was so traumatised by all the painful medical procedures that I was terrified of doctors. Mum would have to wait until I fell asleep to be able to leave my bedside and go to the toilet, or get a coffee.

"I don’t know many people that would be so caring, and would value my mental health and emotional comfort over their own basic needs."

"From birth to now, whenever I am in hospital she is by my bedside advocating for me." Image: Supplied.
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"My mother has given me courage and determination to carry on, and has built such a strong foundation of resilience that I am able to get up very quickly after any situation - medical or not - knocks me down.

"I am so grateful for how my mother has raised me to not view my disability as something that is limiting or has disadvantaged me in any way, and has always encouraged me to fully participate in life."

Yet Anja still has another battle she wants to overcome, and that's the idea of having an 'invisible illness'.

"A wheelchair is the global symbol of disability, marked on every disabled toilet and parking space. In these circumstances there is no surprise that most people are conditioned to believe disability is something obvious and visible.

"I feel the recognition for other people with just as debilitating disabilities that are internal - mental or physical - is coming. I want to be a strong voice in this conversation, as 80 per cent of disabilities are in fact invisible. So many people in the world are facing the same silent battle.

"I want people to realise that disability or not, visible or invisible, everyone is facing a silent battle that is difficult for anyone apart from them to understand. Now is the time for acceptance of all and kindness to one another.

"With mental illness and anti-bullying campaigns coming out in force globally, it is time for there to be recognition that there are many others who are isolated by society for reasons that cannot be seen.

Anja wants those with ‘invisible disabilities’ to have their feelings validated and know that their struggle is just as real as others who have visible disabilities.

With help from the Continence Foundation of Australia, Anja has been reminded that "she is not alone".

Help is at hand for Anja and the more than 60,000 young people who today live with bladder and bowel problems, as well as the more than 6 million adult Australians affected by incontinence.

"You are loved and supported, and there are many others like you out there, so never feel like you have to go through this experience alone," Anja says.

This content was brought to you with thanks by our brand partner, Continence Foundation of Australia.

For more information, confidential advice, resources or referrals to a continence specialist near you, contact the free National Continence Helpline 1800 33 00 66 or go to Continence.org.au.

Do you have your own ‘leaking’ story to share? Tell us your story and WIN.

Continence Foundation of Australia

Whilst Laugh Without Leaking uses comedy to overcome the stigma of bladder, bowel and pelvic muscle issues it comes with a very serious health message.
Prevention is always better than a cure, but early treatment is really key to fixing the problem. Ignoring the issue can have a huge impact on your mental health and lifestyle, whether it be avoiding exercise or limiting social engagements for fear of an embarrassing accident.
Make pelvic floor exercises a daily habit… and you will laugh without leaking.
To find out how to Laugh Without Leaking, go to continence.org.au or call the free National Continence Helpline 1800 33 00 66

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