World IBD Day: How One Teen Found ‘Light at the End of the Tunnel’

Sneha Dave, 17, shares two key insights for anyone living with a debilitating chronic disease.

Growing up with a painful chronic disease – ulcerative colitis – helped Sneha Dave, 17, emerge stronger.

 

Growing up with a painful chronic disease – ulcerative colitis – helped Sneha Dave, 17, emerge stronger.

Everyone has struggles. Mine came in the form of a life-changing medical diagnosis at age 6: ulcerative colitis – a type of inflammatory bowel disease (IBD for short) that has given me both pain and perspective in the past decade. As people around the globe recognize World IBD Day today, I’d like to share some of the lessons I’ve learned while navigating my childhood – and presently teens – with the chronic disease.

1. There will always be light at the end of the tunnel; just keep walking until you find it.

At my sickest, I would wake up each day wondering if today would be the day I’d be magically cured. I wondered if the 20 medicines I swallowed seven days a week would disappear, and if I would ever find a way to be a “normal” kid who did “normal” things instead of worrying about finishing the nutritional drink I sipped for hours.

Deep down, I sensed that someday things would improve. They had to. Right?

Imagining myself as a normal, healthy teenager kept me going. Even though it was difficult to be compliant with the doctor’s orders, I tried my best do anything and everything I could to keep myself from lying in bed all day, in pain. Day after day, I treaded along until my family and I made a difficult decision we thought would get me as close to normal as possible: getting my colon removed.

2. Look at what you have instead of what you don’t.

However, things weren’t normal, I realized, shortly after my procedure, as I looked down at the stoma (piece of small intestine) sticking out of my belly, designed to help me eliminate waste through a bag. I felt defeated because my colon was gone, taking with it the hope that my body would ever heal itself on its own. I would still need numerous procedures and would continue to endure moments of immense pain.

But after having my colon removed, I also gained a new view on my not-so-normal life. I thought about my best friend who passed away after battling bone cancer and Crohn’s disease, another type of IBD. I thought about kids who would be grateful for the treatment I was fortunate to get. I thought about how lucky I was to be here.

That’s how, as I entered my freshman year so undernourished from the disease that I resembled a 10-year-old, I found strength I didn’t know I had. I can’t think of a classmate who didn’t look at me in disbelief as I walked down the halls in jeans two sizes too large because of my grotesque skinniness. I felt people judging me not only on my appearance but on the way my body behaved, which was painfully apparent every time I had to abruptly leave the classroom to use the restroom or sit in the nurse’s office as I rode out painful spasms. I knew I was under a magnifying glass, but there was nothing I could do in the face of those whispers and awkward glances except trudge on, still too sick to worry about minutiae.

People did not know my story. And I didn’t know theirs. Everyone is dealing with something, I realized – be it IBD, family trouble or other issues. So in that sense, I was normal.

I also came to learn that you will lose, but that loss will eventually be compensated. In any sickness people lose things they previously had. For me it was my colon. Although I will never have another colon, losing mine gave me an immense amount of “normalcy” I would have otherwise never experienced. I have been able to get back to things I enjoyed before I was plagued by major flare-ups. The loss of my colon brought me a life I would not have thought possible a few years ago.

But the steps I’ve taken forward have not just been physical. Helping brings healing. Coming out of a physically disabling situation always brings the need for emotional healing. Speaking out about my illness and creating support for myself and others through various activities has brought me healing. I believe that by helping others, you are really helping yourself.

There is no need for answers. In every dreadful situation I encounter, I never ask “why me?” anymore. Personally, it was when I sought these answers that I was destroyed the most. I was diagnosed with ulcerative colitis when I was 6. I have been through a wild ride, but I have learned to accept this journey as it was given to me.

And as I reflect on my life thus far, there’s only one thing I can think about. I look back and realize: I’m already here. I’m already where I thought I would never be.

World IBD Day: How One Teen Found ‘Light at the End of the Tunnel’ May 19, 2015

All blogs are taken from my original blog post on U.S. News and World Report

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