Reducing the isolation that most of us feel, is our main goal: Sarah’s Story
Five years ago my identical twin sister and I were diagnosed with Crohn’s Disease. We are among over 300 Nelsonians living with this silent ordeal. Nelson has the highest incident of recorded Crohn’s in the world. Crohn’s Disease is an inflammatory bowel disease that damages the lining of your digestive system and is very hard to diagnose. Anna and I were constantly in and out of A&E with severe abdominal pain, unexplainable weight loss, dehydration, diarrhoea, vomiting, fever, fatigue, arthritis… the list goes on.
Stress has been one of the main factors to inflame Crohn’s, this causes scar tissue and ulcerations in your intestine, which causes extreme pain. The doctors decided as a last resort to remove the inflamed areas.
June 2012 Anna was admitted into hospital resulting in surgery removing 42cm of her intestine, shortly followed by myself in August 2012 having 23cm removed. Our worlds were turned upside down, recovery was excruciating, we both had complications, and we went through a pain we both can’t begin to explain. I recovered at home having about two months off work. We both would have been lost without having our parents support and help. I literally couldn’t look after myself, I couldn’t walk, I couldn’t sit up right, and alongside this I was sent home with an infection and lost 15kgs within the month. Fighting the pain on a daily basis became life for us. Mum and Dad turned into full time carers, and we saw how hard this was for them as they were helpless but cared so much. Crohn’s is a constant battle between you and your body, your passions, your dreams and what you want to achieve.
After our story and photo was published in the Nelson Mail (NZ) in June 2013 we have somewhat become a familiar face for those suffering silently. Paula Johnston who read this article contacted Anna and I on facebook, wanting to meet. Paulas daughter Jessie had just recently been diagnosed with Crohn’s and within minutes of meeting them we were giggling, joking and chatting over a hot drink. We have been very humbled to help Jessie, and give her some support and direction in her new and terrifying journey.
We fight for our health everyday in ways most people wouldn’t understand, and if we can raise awareness for this disease any way possible we would feel a sense of achievement, our main goal is to reduce the isolation that most of us feel.
I have recently shared my Chron’s Awareness photo shoot on facebook and it was a huge success. I was very lucky that Jessie and Paula helped me with this. The photos were exactly as I envisioned; strong, beautiful and powerful.
The more we open up and share our stories the more people will be educated and they will learn.
Sarah Schiefer, Photographer New Zealand