health

"At 20 you're told you're young and free. I got news that made my life the opposite."

At the age of 20 you’re told you are young, free and have your whole life ahead of you. Do what makes you happy. For me, I was 20 when I was told that I had Crohn’s disease.

This pretty much meant life would likely be the opposite. For the four years leading up to my diagnosis, I had seen my older sister go through the pain of living with Crohn’s and knew the road ahead of me wasn’t going to be easy.

When I first started experiencing symptoms of the disease, I kept them to myself. With my main symptoms being frequent and long trips to the bathroom, coupled with unexplained bleeding and serious pain, I felt embarrassed.

I spoke to my sister and found out my symptoms were the same as hers before she was diagnosed. From then on, it was a pretty safe bet that what was happening to my body was the result of Crohn’s.

While I want to be able to say that the next part of my journey was going to see a doctor, getting a pill that fixed it all, and that I continued my life normally, it’s not. I continued to go through months of indescribable pain, major body fatigue and serious joint pain.

I am also a Type 1 diabetic and this caused even more complications with trying figure out how to manage both diseases.

I got to know my wonderful gastroenterologist on a first name basis and colonoscopies, to check the lining of my large intestine and bowel, became the norm. The hardest part for me was the social and emotional effect that Crohn’s had, and still has, on me.

"When I first started experiencing symptoms of the disease, I kept them to myself." (Image: Supplied)
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In the beginning, I was unable to leave the house for weeks on end and would usually only make the trek to attend my university classes. Being cut off from the outside world and in so much pain led to me having mental health issues, mostly around depression and anxiety.

My friends never meant any harm, but I would commonly hear “but you don’t look sick” or “wow, have you lost weight, you look great”.

All invisible diseases like Crohn’s (or diabetes for that matter) have one thing in common. Nobody knows unless you want them to. This can be both a blessing and a curse. Most days you are able to meet new people and seem perfectly healthy.

However, at the same time, you may be in incredible pain and struggling with more than others will ever realise. This is the dark side of invisible diseases, having so many people unaware of what people with a disease like Crohn’s go through just to try and get through each and every day.

I count myself one of the lucky ones. After many months of changing drug therapies, doctors’ appointments and serious pain, I am finally able to say that I have made it to a point where I have more good days than bad.

LISTEN: Sylvia Freedman shares her experience of living with chronic pain on No Filter (post continues after audio...)

I have an incredible team of doctors, not to mention family, that support me in all that I do. I am coming close to completing my university degree and heading into full time teaching.

Most of this is thanks to my newest drug therapy. Don’t get me wrong, I most certainly still have my bad days both physically and mentally but to know I am supported and that living a normal life with Crohn’s is possible bring me great hope and comfort.

From 1 September, STELARA® (ustekinumab), for the treatment of adults with severe Crohn’s disease, will be listed on the Pharmaceutical Benefits Scheme (PBS).

Australia has one of the highest rates of IBD - a group of conditions which includes Crohn’s disease and ulcerative colitis - in the world; with an estimated 80,000 people affected. Of these, it is thought that nearly 38,000 live with Crohn’s disease.

You can find more information on Crohn’s at the Colitis Australia’s website.

If you'd like to read more real-life stories like Kelsey's, try these:

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