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How the “Ugliest Disease” Made Me Feel the Most Beautiful

Crohn's Disease = The Ugliest Disease

For many years I was too embarrassed to talk about my Crohn’s disease so I grew up depressed and alone with my illness. The ugly things that IBD can do to the body is just awful. It fucks with areas of the body that are considered taboo by most to discuss and the symptoms inflammatory bowel disease can cause are capable of stripping you of your dignity. 

I thought that Crohn’s disease was the ugliest disease you could possibly have but now I feel like it has made me more beautiful than ever before. Funny how life works out that way, isn’t it? I didn’t just wake up feeling this way. It took a lot of effort on my part to rework how I think about my illness and it also took having life experience with Crohn’s disease under my belt. 

Crohn’s Disease helped me find my confidence. It is things like my surgery scars that make me feel beautiful because I know without a doubt that it takes a strong person to go through all that I have gone through, and will continue to go through in the future. When I was young I hated my body. I had no confidence what-so-ever and thought that I was completely awkward as a skinny pre-teen who’s legs were too long and freckles were too much. Like many pediatric patients I experienced delayed growth and puberty and hated my child-like body. Then there was this 

disease that was causing terrible things to happen and when I had to go through tests and procedures it felt almost violating as a child with adults standing over me and examining areas I didn’t want examined. 

These days if I am at the pool or the beach i’ll occasionally catch someone staring at my surgery scars or when I’ve needed a central line for TPN I’ve caught people looking and wondering. I don’t mind; I welcome people to ask me about these things because I look at it as an opportunity to educate others and frankly I am proud of my story and what I have been through. 

I Am Proud of My Story

Over the years I have sometimes been poorly judged. I got out of the hospital one time and I was very underweight and on TPN. I went to the airport the next day to fly to an IBD-related event and a group of girls in front of me got upset with me because they were drunk and holding up the line and I must have rolled my eyes so one of them looked at me and said, “at least I don’t throw up my food!” I knew it was a comment about how skinny I was. Just after that they all got stopped by TSA for their drunken behavior and were told they couldn’t fly. So HA! 

I’ve gotten remarks from an employer that I was not allowed to work if I had a feeding tube or PICC line. At the time I worked in the beauty industry and I guess according to my boss that wasn’t beautiful. I know that when I was younger these things would be upsetting to me but honestly none of it matters to me now. What matters is that I see them as beautiful. I feel beautiful because I know what I’ve gone through and that’s all I need to stand proud. I am happy that today I am able to see what matters in life and what really makes a person beautiful.

I wasn't kidding about the freckles!

Life with Crohn’s disease can be like riding a roller coaster; there will be ups and downs along the way but when it’s all over you either want to ride again or throw up. I would choose to ride again. At least that is what I say today but when I’m having a bad day I’d probably never say such a thing. Haha!

Sara

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