Beyond the diagnosis: Finding strength in the struggle

By Natasha Chinea

When you grow up with a parent who has underlying health issues, it means adjusting to things most kids didn’t have to think about. Where most young girls learn how to do their hair from their mom, I had to teach myself. Where most kids had their mom care for them after hurting themselves playing outside, sometimes she wasn’t there. Even when going through my first menstrual cycle my mom was in the hospital.

I didn’t fully understand what Crohn’s disease was at the time, but I knew it was taking away these small moments that we were supposed to share.

For those of you that don’t know, Crohn’s disease is a chronic inflammatory disease that causes inflammation of the digestive tract, usually the intestines. Crohn’s disease is a lifelong condition but getting treatments regularly can help make symptoms more manageable.

For someone living with Crohn’s, it can feel like intense sharp pain, cramping or the urgent need to use the bathroom. It’s unpredictable which can make everyday life hard to plan.

Crohn’s disease is an inflammatory bowel disease that can often lead to hospitalization. But behind the clinical definition is the emotional reality families live with – something that I feel needs more attention.

“Why can’t she be here for this?” I cried, sitting alone in the bathroom while my mom lays in the hospital bed – again. It was my first period, and all I could think was: “Why do I have to do this alone? Why me?”

This was the start of little me realizing that my childhood would look different. It was the beginning of me learning piece by piece that the person I needed most won’t always be around.

My mom is my best friend. Growing up it may not have always been the case. I was originally a “daddy’s girl.” Unable to go anywhere or do anything that didn’t involve my dad.

As I got older, that changed. I began to see my mom not just as someone who was sick, but as someone who was strong – someone who, even on her worst days, still found ways to show up for me and put me first.

I still had to do a lot on my own, but over time, I stopped seeing that as a burden. Instead, it became a quiet strength that I carried with me.

There were moments of frustration and sadness, yes, but also moments of deep connection. I learned to cherish the little things and to see the positive in a world of negatives. These are still some things that I am learning to this day – to be grateful for what we have and that the only thing you can control is how you react to a situation.

Eventually, I stopped asking, “Why me?” and started asking, “How can I help others like me feel less alone?”

There are so many families with invisible battles. If sharing my story makes even one person feel seen, or one parent feel less guilty for what they can’t control, then it’s worth it.

I didn’t know it back then, but all those moments alone – the quiet tears, the self-taught lessons – were shaping me into someone strong. Someone who can stand on her own but also feel deeply for others, I wouldn’t trade my mom’s love for anything, even if I have to learn how to braid my own hair all over again.

I remember a time I was lying in bed, already missing my mom, and then dropping a tablet on my face, leading me to hysterically cry. Not because it physically hurt, but because it hurt that my mom wasn’t there to comfort me. That I, as a child, had to go through this feeling alone.

That’s a kind of hurt that you never forget.

Crohn’s disease forced me to grow up fast, but in doing so, it taught me things that school never could.

I learned responsibility by managing small tasks at home. I learned emotional regulation by staying calm during any minor inconvenience that my mom wasn’t there to comfort me through. I learned how to be there for someone without needing anything in return.

While my friends were asking their moms for help with outfits or math homework, I was the one helping – being there for my sister in the way I wish my mom could’ve fully been there for me, doing her hair, helping her get dressed, helping with homework, etc.

I think growing up with a parent with Crohn’s disease gave me a kind of emotional depth that’s hard to explain. I notice when people are hurting – even when they don’t say it out loud.

Feeling so alone for so long, while it wasn’t my mom’s fault, it still forced me to grow up quicker than most.

The weight on my shoulders continued to grow with age and sets an expectation that can tend to feel overwhelming. Always being “more mature” or “mature for your age” led to so many mental complications for myself.

It always led to: “Am I doing this right? I need to do this right, I need to know what I am talking about, people expect me to know what I am doing, I can’t fail because that would be a bad example and embarrassing, etc.”

While these thoughts still flow through my head, when looking back I realized that not only was it good for me to grow quickly, but I rather be the one going through what I do because I can handle it.

These days, I still worry about my mom – that has never and will never change. Without her I would automatically forget how life works and how to function. But as of now we laugh more and cry less, trying to be strong and coming to the terms that we can’t control everything and have it how we want, that we can only control how we react to it and that we are given these burdens because we are strong enough to deal with them.