A person with short frizzy hair holds a mirror to their face; cracked glass patterns scatter behind her.

Tiny and Cute: Cystic Fibrosis Impacts My Body Image

“I wish I could eat like you.”

“You’re so pretty and thin.”

“Everything looks good on your skinny frame.”

“You are so tiny and cute.”

Skinny isn't always what it looks like

These are all things said to me over and over in life. Yes, I am skinny and I don’t have to worry about ever being overweight. But I do have to worry about being underweight.

As a child I was so tiny, it was frightening. Since my 12-week premature birth until my teenage years, my body was basically starving, despite the never-ending supply of food we gave it. At the age of 12, I was only 45 lbs, the average size of a kindergartner. I was too sick to play or run. I wanted to be like everyone else. Believe me, being “tiny and cute” wasn’t as great as people thought.

Searching for a weight loss solution

When I was 12, my doctors started talking to my parents about a G-tube and the benefits I could gain from it. I was a little scared, but knew I needed to do it. I said, “Ok, let’s go for it” and I had the G-tube placed in the fall of my 7th grade year.

I quickly started noticing the difference in how I felt. I was growing, gaining weight, and had energy. I even decided to try-out for the 8th grade poms. Making the team and being able to dance like my friends was something I had never been able to do. I loved being in physical activities. However, as I started to appear physically more my age, I struggled with the changes.

My body image suffered

All my life society has been telling me, “I was unique and cute, BECAUSE I was tiny.” It was a huge part of how I identified myself. Hearing so many positive words about my small stature made me a little nervous in high school. I only weighed 90-100 lbs, but nobody talks about weight in high school. I had no idea what other girls my age weighed. I felt like I was no longer “unique or cute.

I’m lucky this impact never affected my eating habits, but it very much impacted my self-esteem when it came to my looks. I loved the energy the new weight gave me and I was grateful for the ability to keep up with my peers. However, I gained it so quickly over the year that I feel I never had time to adjust to the way I physically changed. I thought I looked like a different person. Also, I didn’t go through puberty at a typical age, so I still had a “baby face” in high school. This really made me feel unattractive.

Having supportive friends helped

I’m fortunate that high school was such a positive experience for me. I got along with everyone and felt like it didn’t matter what I looked like because I had a great, close group of friends. Plus, due to my extra energy, I was able to be involved in as many extracurriculars as I wanted, like theatre and choir. Heck, I was even the Prom Queen.

So thankfully, even though I was internally struggling with my looks and weight, everyone made me feel comfortable in my skin. Eventually, I started to gain some self-esteem in regard to my looks, as I started to go through puberty and started to get used to the way my body looked and felt.

Weight loss from cystic fibrosis in college

In college, I relied on my stomach tube even more. I had trouble eating enough calories. I didn’t have a lot of time to cook and struggled financially. I got too wrapped up in college and didn’t focus enough on my weight. Going through puberty later made me feel more attractive, less like a young child and more like an adult. I think this blinded me to the fact I was experiencing slow weight loss due to my cystic fibrosis (down to 98 lbs).

During my junior year, I got really sick and dropped even more weight… hitting an all-time low at 80 lbs. It took a lot of work, including the help of my roommates to get back on track weight-wise. I never would have made it through college without my stomach tube (or my friends). The 1000 calories I got from my stomach tube while sleeping saved me. By the time I graduated I was back around 100 lbs, but it was after college I started to see an end to my weight loss struggles.

Building eating habits as an adult

As an adult, I had a set routine. Mornings, work/lunch, snacks, dinner, snack before bed. I had more financial stability and I’m sure not having to run around constantly to classes with 40 lbs of books on my bag helped. I burned way less calories every day and I was able to eat quite a bit more. I noticed I was gaining weight much more easily. New medications made it even easier.

Then I started dating Andrew (my now husband). He had a culinary degree and loved cooking too! Between the two of us cooking, taking control of what we ate, and his help doing chores (like mowing the yard). I soon didn’t even need to use my stomach tube anymore (except when sick or after surgeries).

Today, at the age of 34, I can say I haven’t had a stomach tube in five years. I don’t really need it right now. Six years ago, as we were planning our wedding, my doctor agreed I didn’t need it. I had it for a whole year and didn’t use it once. It was removed in October 2014. I can’t say I’ll never need it again, but for now... I’m stable. I’m still working on my weight (I’d like to be 110-115 lbs), but it’s nice to eat for enjoyment and not out of force.

It was weird saying goodbye to my stomach tube after 17+ years. I’m thankful I finally have control over my body and weight. And mostly, I’m glad I’m finally comfortable in my body (all 5 feet and 107 lbs of it).

Have you experienced drastic weight loss due to cystic fibrosis? How has it affected your body image? Share in the comments below!

By providing your email address, you are agreeing to our privacy policy.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Cystic-Fibrosis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

Please read our rules before commenting.