Daily Life | Disability | IBD
Inflammatory bowel disease (IBD) has been both a blessing and a curse. It has robbed a lot from me, but it has also given me opportunities I wouldn’t have had otherwise. When being diagnosed with a lifelong illness, you need to try to see the glimmer in the dark. Although IBD has caused me excruciating physical and emotional pain, I have to believe that there is good in why I was diagnosed.
“In the midst of darkness, light persists.” – Mahatma Gandhi
Emily in Marching Band Photo Credit Shana Andrews
I was diagnosed with IBD in August of 2016, right before my junior year of high school. I missed the first few months of school but decided to return for spirit week because that was my favorite time of year, and I didn’t want to miss it. However, there were other opportunities that I did miss due to being diagnosed. My favorite activity in school was marching band. Marching band started in August and usually went until November. I didn’t get to participate in marching band in 2016. I had to watch all my friends and brother march in the show without me. I was devastated. Various other opportunities were ripped away from me, including various social events, participation in musicals, and a full-time job until (hopefully) this year.
I often feel that IBD has robbed me of my independence. For example, unlike my friend Jordyn, who takes solo trips across the world, I would never feel comfortable doing that. What would happen if I got sick when I was alone? What would I do? Who would I turn to? I got my license years ago, but I often feel too sick to drive, so I depend on my parents or fiancé to drive me everywhere. I’m hoping that this changes as I get better, but right now, it makes me feel severely dependent on people, and I feel embarrassed. I depend on others to help take care of me when I’m having a bad Crohn’s day, and that sometimes even means getting food for me or filling my water back up. IBD has taken away a lot of my independence.
This one should be self-explanatory. I have never felt healthy since being diagnosed, and I can assume I’ll never feel 100% healthy again. I don’t remember what that feels like not being in pain every day.
I’m not talking about confidence in how I look, although I do feel like IBD screws with that self-image at times too. I’m talking about confidence in my body to not be sick. Confidence that I don’t need a toilet always near me wherever I go. I automatically assume the worst when it comes to my body, and I feel a huge lack of confidence that my body will get healthier, even though I know it will eventually.
The Year from Hell, when I first got into my ongoing flare. I was in the hospital on and off in 2023. If I wasn’t in the hospital, I was at home, suffering on my couch. IBD took 2023 away from me. I barely even remember most of it, which is probably a good thing, honestly. But I still feel like I lost a whole year of my life to IBD.
Emily and her mother in Disney World
My mom is my caregiver. She takes me to all of my doctor’s appointments, whether it’s for my IBD or something else. She takes me to get testing done (MREs, MRIs, ultrasounds, colonoscopies). We already had a close relationship before IBD, but we have an even closer relationship now. She’s my best friend. Understanding my situation more than anyone else in my life, she’s dedicated to helping me feel better. She helps me with all my various pills each week and staying on track with filling my pill cases. She stayed with me each time I was in the hospital in 2023, sleeping on uncomfortable couches or chairs. When I was on other biologics, she would take me to my infusion appointments, which were 2.5 hours away from home. I’m very grateful for her and all that she does for me. It’s hard being a patient, but I know it’s also very hard on her to be a caregiver.
When I was on my fourth biologic, I met my friend Alex through a Facebook support group. We became friends quickly toward the end of 2023. He understands Crohn’s Disease more than any other friend because he lives it. We talk everyday whether it’s about our current symptoms, how much we’ve pooped that day, or just everyday stuff like how our jobs are going. It is amazing to have a friend who understands what I’m going through. I can tell him I was trapped on the toilet for 2 hours, and he understands my pain. Subsequently, I became friends with his girlfriend, Nicole, whom I also adore. Alex is a great, supportive friend, and I’m lucky to have him.
This one is harder to explain because I don’t have any hard evidence that IBD actually gave me Adam. However, in the timeline of my life and all the events leading up to meeting him, I feel like if I hadn’t been diagnosed with IBD, I wouldn’t have met him. Adam is one of the best things to ever happen to me.
Emily with her fiancé, Adam.
Without IBD, I wouldn’t be volunteering with this wonderful organization. I wouldn’t have met the many lovely women that I have. I probably wouldn’t even know this organization existed if it weren’t for IBD. I love sharing my blogs and volunteering, so IBD has helped give me a purpose working with Girls With Guts.
I like to think I was already an empathetic person before my diagnosis, but afterward, I became even more empathetic towards people with disabilities and chronic illness. I see their struggle, and I understand their struggle. I live their struggle.
In the end, IBD has stolen so much from me, but it’s also given me relationships, perspectives, and connections I would not have without it. It’s hard to say that if I were able to go back in time and stop myself from being diagnosed what I would do. I know I would be in less pain, but I believe that IBD has helped shape me into the woman I am today.
“The flower that blooms in adversity is the most rare and beautiful of all.” – Fa Zhou, Mulan
Born and raised in Pennsylvania, Emily was diagnosed with severe Crohn’s Disease in 2016 at age 17. Being 25 now, she wants to help bring awareness to IBD. Emily is currently pursuing a master’s degree in Education. She currently works as a substitute teacher but her dream is to be a first grade teacher. Outside of working, she enjoys traveling, spending time with loved ones, and reading.