This article was written by Nathalie Garcia from the United States.
My brother and I grew up with IBD. At completely different stages in our life, I watched my brother struggle with IBD throughout college as I was barely navigating middle school.
I’ve read many stories about various individuals’ stories of how they were diagnosed with IBD but I have not yet encountered a story like ours and that is why it is so important for me to tell it—so if there is another pair like us out there, they know they are not alone.
I think it’s pretty common for siblings to fight. My brother and I did, but not in the way you might think. Growing up, we definitely had our disagreements and still do to this day, but for all my life, my brother was more than a best friend; he was someone I knew I could rely on.
During the holiday season, we would anxiously wait for our mother to finish wrapping up all the presents so that we could take the empty cardboard rolls and battle until our makeshift swords broke. I never thought these battles were fair because my brother was not only significantly older than me, but he also towered above me. Still, I insisted on showing just how tough I was.
Over time, our battles disappeared and were stored in my childhood memories. Nerf-gun fights turned into studying in separate rooms and playing with our dog turned into playing on the computer and reading books.
I still remember the seconds leading up to when I found out my brother was sick. I was sitting in my room, my back against the frame of my bed, staring at my phone. I could hear my father’s footsteps stomp on each step on the stairs; the last one always creaking a little louder than all the others.
“Your brother is in the hospital.”
Maybe that’s what he said although I’m not entirely sure because I was so confused at the moment I could hardly focus on what he was telling me.
Walking into the emergency department and seeing my brother hooked up to all these machines he didn’t look like my brother. I didn’t know who this person was. Suddenly, everything started to make sense. The gradual separation of our hobbies, the persistent tiredness, his pale and hollow face only amplified by just how blue his lips were.
I didn’t know. I didn’t know. I didn’t know.
All I could think was how I didn’t know. I didn’t notice he wasn’t eating like my brother used to eat. I didn’t notice how much exhaustion he carried every single day. I didn’t notice because I was so consumed in my own life. I felt that my brother had been slowly decaying in front of me without me even blinking an eye.
We found out later that night my brother had something called ulcerative colitis. He was bleeding on the inside. His intestines were inflamed. He needed blood transfusions. I didn’t know what any of this meant. All I wanted was to know that my brother was going to be okay.
Instead, I was greeted with the news that whatever this thing was that my brother had, it was forever. There was no cure.
The following months consisted of sudden and extreme changes to our entire family. Staples in our usual diet were stripped away. No more Rockaletas, no more chamoy, tapatio, salchichas, jamón y huevos, no more Skwinkles, jalapenos, spices, chiles, arroz con leche, flan and a list that seemed to go on infinitely.
I used to complain all the time that we were reduced to tilapia and tumeric rice for what felt like every single day. I even naively used to respond to my brother’s sudden mood changes by thinking if I were to ever get sick, I’d never be like him. I grew jealous and angry that it seemed like my parents valued his well-being over my own and I couldn’t comprehend why my life had to change for him.
It’s actually ridiculous looking back at my younger self at how silly these thoughts were. Not that 13-year-olds have the best moral compass anyways. A couple years down the road, when I began exhibiting symptoms of my own, I remember thinking that this was the universe’s way of punishing me for all I thought and for all I said out of spite, out of loneliness, out of longing for my brother and for our family to be ourselves again.
I had a gut feeling it was IBD before my doctors even figured it out but hearing those words made me sink into my own body because I had watched this disease consume my brother and I knew it was about to consume me too. My whole life came apart into pieces in front of me with the knowledge of the steps that diagnosis took, discovering the right treatment took, the friends I would lose, and the hate I would receive.
But having my brother there changed everything because he was the one person who never made me feel different. IBD was a casual thing to us. Something we would joke about together, with the disapproval of our parents of course. Chronic illness wasn’t supposed to be something to joke about, but it was to us because we knew how ironic it was. We recognized how ironic it was to wish to never get sick, to wish to never have something that could change your life like that, to think that you were strong and be pushed down and corrected again and again.
All I wanted for my brother was to support him and I couldn’t do that because I could not possibly understand him at the time he was diagnosed until all of a sudden, now I could. Our bond became stronger for it.
It was easy. It was easy to tell things to my brother without even having to explain or sometimes without even having to say anything at all. From anger, grew a new understanding for one another and from jealousy grew an understanding that some things just do not work out the way you want them to. I know now that my emotions were a natural reaction to such fundamental changes to my life, it just took a long time to get myself there.
Despite the sadness that IBD brought onto our family, I am eternally grateful for IBD because, as much as I hate it, I am so glad it gave me the opportunity to bring my family closer to one another. My IBD brought me closer to the realities people were experiencing all around me that I couldn’t see immediately. I will treasure that fact alone forever.
This article is sponsored by Lyfebulb.
Lyfebulb is a patient empowerment platform, which centers around improving the lives of those impacted by chronic disease.