“Ulcerative colitis didn’t just change her life it changed all of ours.”
My 5-year-old Daughter was diagnosed with UC in 2013. She was the tenth person in my husbands extended family to be diagnosed with IBD, and the youngest by far. Her sister has written about her feelings on life with UC and I thought it provided amazing insight on living with this horrible disease.
She was only five when we found out. Five years old. It still doesn’t feel real sometimes how someone so small could be in so much pain. We didn’t know the word ulcerative colitis then. We just knew something was wrong. She was tired all the time. Her stomach hurt constantly, and she started losing weight. Mum thought it might be a virus. Dad thought maybe food poisoning. But then the bleeding started. I remember the worry in everyone’s eyes, even though they tried to keep smiling around us. I remember sitting in the hospital waiting room with my feet dangling off the edge of the chair, watching the clock tick so slowly it hurt. My sister was somewhere behind those doors, being poked, prodded, and scanned. She didn’t cry though, not in front of me. She tried to be brave. And then we heard the word. Ulcerative colitis. A chronic illness. No cure. Just management. That’s when everything changed.
Hospitals became my second home. The smell of antiseptic, the beep of machines, the shuffle of nurses’ shoes on cold floors that became our normal. My sister spent more days in a hospital gown than in school uniform that year. There were IV poles taller than she was, tubes in her arms, machines that whirred and clicked. Sometimes she was so weak she couldn’t even sit up.I saw her tiny body curled up in that bed, pale and still, and I wanted to scream. I wanted to tear the pain out of her and take it for myself. I would have, if I could. Mum slept on the plastic hospital chair every night, her head bent awkwardly. Dad worked during the day and drove straight to the hospital every evening. I stayed with Grandma a lot. We were all scattered, trying to hold things together with shaky hands and forced smiles. But even in the worst moments, my sister stayed strong. She didn’t want to talk about how much it hurt. She just wanted to go home.
When she was home, everything revolved around her health. We changed what we ate. We had to cancel holidays. Spontaneous family days stopped happening. She was on different medications — some made her moody, some made her bones ache, some made her cheeks puff up like balloons. She hated it. She hated being “different.” I didn’t always understand what she was going through. I just knew she was sick, and that everyone was worried all the time. When she had a flare, I missed how things used to be before the hospital bags, before the whispered conversations between our parents at night. But then she’d do something silly make a face, crack a joke, try to dance in the kitchen. And I’d remember: she was still her. Still my sister. Still fighting.
No one really talks about what it’s like to watch someone you love suffer. It’s a slow kind of heartbreak. Not loud. Just this quiet ache that follows you everywhere. I hated that I felt jealous sometimes of the attention she got, the time she spent with Mum. But mostly, I felt useless. I couldn’t make her better. I couldn’t stop the pain. All I could do was be there. But something else happened too. I grew up fast. I learned to listen more, to be gentle, to notice when someone is faking a smile. I learned what true strength looks like, and it wasn’t loud or dramatic it was my sister, dragging herself to school even when she didn’t want to get out of bed. I looked up to her in a way that I don’t think she ever realised.
Most people don’t know what strength looks like until they’ve seen someone battle a chronic illness. My sister taught me that strength is going to school the day after a hospital stay. It’s pretending you’re okay, so your little sibling won’t worry. It’s swallowing pills that taste like metal, every single day, for years. She missed out on sleepovers, parties, even school trips. And yet, she never asked why me? Not once. She just kept going. Quietly. Fiercely. She became an expert at hiding her pain. But I saw it. I saw the way she gripped her stomach under the table. The way she flinched when no one was looking. And still, she smiled. Still, she laughed.
Teenage years are hard enough. Add a chronic illness to the mix, and it’s brutal. She had to think about things most kids never even considered bathroom access, flare-ups, fatigue. There were days when she came home and collapsed onto the couch, too tired to even speak. But she still studied. Still pushed herself to do well. She wanted to be treated like everyone else, and that meant working twice as hard just to keep up. And she did. Even when her body was screaming at her to rest, she kept showing up. I don’t think any of us realised just how strong she was until we saw her keep going, day after day, year after year, without giving up.
Ulcerative colitis didn’t just change her life it changed all of ours. We became closer. We became more tired, more emotional, more aware of the fragility of everything. There were arguments. Tears. Long nights of silence. But there was also love so much love. We celebrated the little victories: a full week without pain, a good doctor’s report, a laugh in the hospital room. Those moments meant more than any birthday party ever could. We learned how to fight together. How to lean on each other. How to keep hope alive, even when it was flickering.
And now somehow, against all odds she’s preparing to go to university. Soon I will watch her pack her things like I watch her make lists, plan for her future. And I can’t help but feel a lump in my throat. Because I remember the five-year-old girl who couldn’t get out of bed. The eight-year-old who cried herself to sleep in a hospital room. The twelve-year-old who missed her school camp. The fifteen year old who smiled through the pain. And now she’s here. Brave. Determined. About to start a new chapter. She deserves everything this life has to offer. She deserves laughter, love, peace, and endless good days. After everything she’s been through she deserves the world.