I find it difficult to tell my story. As an influencer, I chose a career that requires me to be “perfect” at all times and to share my life online, but I found myself sharing only the good and what people want to see, not the actual truth. Being judged for something that is out of my control – something I was born with – was not an option, so for years I chose to hide it from the world.
If I’m being called an “influencer”, I might as well put that towards something worthwhile.
I have a story, but I’ve been afraid to talk about it for fear that I won’t seem “perfect” anymore. Today, however, I’ve decided to share it, to ignore all the voices inside my head. Not for me, but for that one person who might be reading this or watching my documentary and thinking, “I am not alone”. I’m sharing it to inspire and to influence. If I’m being called an “influencer”, I might as well put that towards something worthwhile.
So, what’s my story?
I was born on August 1, 1995, and that was the day my doctors discovered I had Hirschsprung’s disease, which one out of every 5,000 children is born with. Since then, treatment has been a lifelong struggle, particularly in the Middle East where there’s little to no assistance in diagnosis or treatment. It’s a condition that’s usually present at birth and is the result of missing nerve cells in the muscles of the baby’s colon. Hirschsprung’s affects the large intestine (known as the colon) and causes problems with passing stool. My symptoms were on and off – a mixture of vomiting, swollen belly (due to not passing stool for days), high fever, and constipation.
Fast forward to 1997 when I was two years old and had a “pull-through” procedure, during which part of the large intestine is removed and connected to the anus. However, my body did not respond well to it, so I had to have an ileostomy. An ileostomy is one of two treatments available to help treat the blockage of bodily fluids passing. It’s when the small intestine is connected to a stoma – an opening on the abdomen that can be connected to either your digestive or urinary tract. A stoma basically looks like a small, pinkish, circular piece of flesh that is sewn onto the body. It’s outside of your stomach at all times, and this is where you pass stool from. In order to make it easier, a pouch was stuck onto my ileostomy in order to collect the stool, which I had to empty when it got full.
So, I lived with an ileostomy for over 18 years. I even gave it a name – Cherry. Cherry was a big part of my life, and regardless of how difficult things with Cherry got, it saved my life. It made it easier for me to participate in the real world, even though being a teenager with a pouch hanging from my stomach definitely made me extremely uncomfortable with myself! I would avoid looking in the mirror and would rely on wearing clothes that made me feel good and a ton of makeup to feel pretty. I was always asked by my friends (who knew nothing about my condition as I chose to hide it due to fear of being judged or looked at like I was “weird”) why I wore so much makeup, or who I was doing it for. Most of them thought I was just trying to get attention, which was hurtful, because they had no idea what I was going through or how I was feeling about myself.
When it was finally time to get rid of Cherry, my last surgery left me with a fistula, which is literally a hole burning through my physical interior – as well as my emotional exterior. In order to treat the fistula, I had to sacrifice nine months of my life (in addition to the time it took to heal) as the procedures needed three months in between each other. The first one was to bring back my ileostomy to pass stool from, and the second (the major one) was to take a part of my leg muscle and use it cover the hole of the fistula. The final procedure was closing the ileostomy and allowing stool to pass from the rectum again.
I had to make a decision about whether or not I would carry on fighting.
The fistula developed during my first year of university, and the fact that it happened right after I got rid of my ileostomy was devastating. I felt hopeless. I didn’t want to be around doctors or hospitals anymore. I felt like my body was broken because of all the surgeries and the number of times it was opened up, over and over again. I was starting university, and all I wanted to do was focus on my studies.
I had to make a decision about whether or not I would carry on fighting. I decided to fight, and I did not give up. I did so for my future and for my parents, who wanted nothing more than to see me healthy and happy. I decided to live with the fistula until I graduated from university and started the long procedure of treating it.
I lived with a fistula for four years by developing a routine that helped me maintain a somewhat-normal life. It consisted of dedicating three hours every single night to emptying my stomach. No matter what, I had to do this or else I wouldn’t be able to leave the house the next day because it could leak at any moment. It became a routine, a way of life for me, and I constantly had to remind myself that it was only temporary. University was so important to me; it was the only part of my day that made me feel like a normal girl, like I had a normal life. That feeling meant the world to me, and it gave me the push I needed to finish my studies and continue fighting until I felt normal all the time. And that’s exactly what I did until I graduated and traveled abroad to begin the procedures that would cure me of this problem.
Hirschsprung’s is an internal disease, but for me it was an external struggle that made me focus on my outer image. I was constantly trying to perfect and pamper myself to mask how I was feeling inside. But the missing pieces, the nerve endings that threw my digestive track off balance, are the reason I am the way I am and the woman I have become.
I’ve spent a great deal of my life struggling to accomplish day-to-day tasks, but now I’m sharing my story through my documentary – ‘Resilience’. It started out as a stage on which I could break away from the darkness and break down my walls, but it ended up being a platform for those around me, inspiring people to have faith, strength, and resilience.
Today, my life feels like it is finally on track. For the first time in forever, I am able to wake up and plan my day not around what I have to do but around what I want to do. I am married, and I am accomplishing everything I used to dream about while I was on that hospital bed. It might have taken me 21 years to get to where I am now, but I wouldn’t trade it for the world. This is my story, and I love every part of it.