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“You deserve to be heard” – Erin’s story
My name is Erin and I live with Crohn’s disease. I live with a less common version of Crohn’s Disease which is confined to my small intestine, which scopes couldn’t reach and find. It’s officially been a year since I was diagnosed. Last year, I was starting high doses of Prednisone (steroids) following 20 months of fighting the system and 18 months of being tube fed into my small intestine.
I was gaslight by doctors and told that the symptoms were in my head despite my calprotectin levels soaring well into the thousands. I was pushing through extreme pain every day with no one doing anything to help because — how could a teenage girl possibly have something actually wrong with her? It must be her mental health! After a long fight in the public health system, I found an amazing private gastroenterologist who took me on and wasn’t afraid of the other doctors ringing him to say that I wouldn’t get better, and that his treatment plan wasn’t the fix. My gut told me that something was actually wrong despite what everyone said, and I was right.
This time last year I was just starting to get my life back after it had been taken away. At the time, I thought it was the best that I could possibly feel and I was honestly so grateful. Now I’m extremely happy to say that I’ve gotten so much better. My life is back on track. I’ve put on all the weight that I lost. I’m happier than ever and I’m trying to help others who are in the same situation that I was in.
The average time it takes to be diagnosed with Inflammatory Bowel Disease is about five years and although I was diagnosed sooner than that, I had been sick to the point where I was being tube-fed. At that stage, I thought I was honestly a goner. I want to show everyone that there is hope even when you feel like there’s no way out.
Hopefully my story demonstrates that getting better is possible, so keep fighting. Your voice is enough, and you deserve to be heard and have the chance to be happy. With each individual standing up we can make a change. Anything is possible so keep fighting and trust your gut. You’re not crazy.