When my youngest brother, Tyler, was born seven weeks early, the doctors assured us he’d be fine. He was tiny but healthy, and we thought he’d have a “normal” life once he left the NICU. That hope shattered just before his sixth birthday when Tyler was diagnosed with Mitochondrial Disease, a rare and terminal genetic condition. Suddenly, Tyler was “the sick kid” in the family.
I didn’t mind the label, though—it felt true. Neither I nor my other siblings showed any signs of the disease, and I grew up seeing myself as Tyler’s caregiver. It wasn’t supposed to be me. But I was wrong.
When Living with Chronic Illness as a Teen Became My Reality
Around the time Tyler was diagnosed, my own health started slipping. I didn’t think much of it then. Tyler was always in and out of the hospital, and my problems felt small in comparison. Complaining didn’t feel fair, so I brushed it off.
The doctors did too. They said my symptoms didn’t fit any diagnosis, and I didn’t meet the criteria for Mitochondrial Disease—yet. My body, however, had other plans. By 2012, I was dealing with random allergic reactions, constant nausea, and weight loss. It didn’t make sense, and tests didn’t provide answers. The doctors were convinced my issues weren’t connected to Tyler’s condition.
Spoiler alert: they were wrong.
How a Feeding Tube Changed My Journey with Chronic Illness
Things got so bad that I needed a feeding tube. My body couldn’t handle regular food, so I was switched to a bland, medical formula. It wasn’t ideal, but it helped. The allergic reactions slowed down, and for the first time in a while, I felt like I could breathe.
Even then, I couldn’t shake the guilt. I knew how lucky I was compared to my brother. He didn’t have the same “fixes” available to him. My mindset shifted: instead of asking, Why me?, I started feeling thankful for what little relief I could get.
That living with chronic illness relief didn’t last long.
The Hard Truth About Living with Chronic Illness as a Teen
Just when I thought I had found my new normal, my health spiraled again. Four months after a major surgery, I ended up worse than before. My mom knew something was wrong before I could even say it. She recognized the signs—she’d already seen them in Tyler.
By the end of that summer, my body felt like it was falling apart. My organs were failing one by one, my immune system was attacking itself, and my nervous system was glitching out. I dropped to less than 90 pounds, and my digestive system shut down completely.
For years, I believed the doctors would find answers. That belief shattered when they started apologizing instead of helping. “Science isn’t there yet,” they said. Translation: we’re out of options.
My Mom’s Fight: Never Giving Up on Chronic Illness
My mom refused to accept that. She dragged us to every specialist, tried every clinical trial, and made us stick to every medication—even when it made us feel worse. She told us to keep fighting because the next big breakthrough might be right around the corner.
I don’t know if she really believes that, or if she just needed to say it out loud to stay strong. What I do know is that her determination helped me stop beating myself up.
Finding Strength While Living with Chronic Illness as a Teen
It took years, but I’ve stopped asking, Why me? Instead, I’ve learned to live with the unknown. No one—doctors, scientists, or anyone else—can predict what will happen tomorrow. If we had listened to everything the doctors told us, Tyler wouldn’t have made it past five, and I wouldn’t have walked across the stage at my high school graduation. But here we are, proving them wrong every day.
Tyler and I are both sick, but we’re also fighters. And now, I live with a purpose: to make sure no teen, kid, or adult ever has to hear, “I’m sorry, there’s nothing we can do.