Coping | Daily Life | Disability | IBD
Emily during the hospitalization which led to her diagnosis.
Imagine this:
A perfectly healthy, happy 17-year-old girl. Imagine that girl losing about 50 pounds in 2-3 months, not being able to keep any food down, not wanting to eat anything, and thinking she’s going crazy because she suddenly feels sick all of the time. Are you supposed to feel like this every day? Is it healthy to lose this much weight this fast? What’s wrong with me?
Now imagine that girl being taken to the hospital one night because she can’t stop throwing up, and then imagine that girl a month later being told she has an incurable, lifelong illness she didn’t even know existed up until that point. “It’s one of the worst cases of Crohn’s Disease we’ve ever seen,” the doctors at Johns Hopkins hospital in Baltimore, Maryland told her.
When I was 17-years-old, I was diagnosed with Crohn’s Disease, which is a chronic inflammatory bowel disease that affects the lining of the digestive tract. I’m 26 now, and this year marks the 9 year anniversary of my Crohn’s diagnosis. Looking back to when I was 17, there are a few things I wish I could tell my younger self on the day she was diagnosed.
It took me some time to realize that I was strong. Being given a chronic illness, I always thought that maybe I was weak when it came to handling it all, especially since I was younger when I was diagnosed. I didn’t think I could continue on sometimes when I was so sick. Other times, I thought I would not be able to complete a medical test because it was too hard and grueling. But what I have come to realize is people like me — the silent sufferers with chronic illness/pain — are the strongest ones out there. We have to endure pain on a daily basis but we push through each day. That is one of the hardest things I have ever done, and it makes me stronger for it.
I would love to tell 17-year-old Emily that she CAN make it through those medical tests. She can make it through those symptomatic days where she’s really sick. She can make it through doctor’s appointments, ER visits, and hospital stays. It’s hard to see sometimes, but 26 year old Emily is one of the strongest people I know, and so are all of the Emily’s before that.
I used to have the belief that no man would love me or want to marry me because I had a chronic illness, or “baggage.” I thought it would be too much to deal with for anyone else. What I would tell 17-year-old Emily is that a man will come along who loves her, despite the chronic illness. I met my fiancé Adam when I was 21 and although there were some learning curves and a few small bumps along the way, he has been nothing but wonderful about Crohn’s Disease. We’re getting married next summer in 2026, and I’m so glad I have a partner like him to help me through this. He understands the downsides of Crohn’s. He understands that some days he will have to clean, do laundry, cook, AND do the dishes because I’m too sick. But none of that matters to him because he fell in love with me for my personality, and Crohn’s is just an obstacle that we can work through together. If you think that no one will love you with IBD or a chronic illness, don’t worry. The right person will come along and love you fully as you are, just as Adam fully loves me.
Your entire life changes with this type of diagnosis. Certain things like diet/nutrition, doctor’s visits, your emotional state/mental health, medications, work, exercise, sleep, friendships, the financial impact, and your social life all change. This is not to say it all changes for the bad. Once you are diagnosed, everything changes completely, but so will you. You will learn to adapt to all of these changes. It will be hard. However, what I would tell 17-year-old Emily is that this will all help shape her into the amazing young woman she is today. She is resilient, strong, and hard-working. She is kind-hearted, empathetic, and warm. She is more self-aware than ever before. She is an advocate for IBD. She is a fighter. Being diagnosed with a chronic illness is a terrible thing, especially one like Crohn’s Disease. But I fully believe that I wouldn’t be the woman I am without it, and I am very proud of who I’ve become.
When diagnosed with a lifelong chronic illness at age 17, it is hard to see hope for the future. Sometimes, it is even hard to see it now at 26, because I worry about growing old with this illness and how it will be once I’m 80. But what I would want to tell my 17 year old self and even my 26 year old self now is that joy, happiness, and wonderful moments still exist and will/do happen. You are going to have days, weeks, or periods of time that you are consumed with thoughts about the present and future with a chronic illness and what that means for your life going forward. But you can and will still find joy and be happy.
I find moments of joy in smaller things like cuddling my sweet cat Lily, having an ice cream cone, or watching my favorite show 90 Day Fiancé with my mom. I find moments of joy in the bigger things in life, like graduating from graduate school with a 4.0 GPA, getting engaged, and finally getting my teacher certification. Being diagnosed with a chronic, lifelong illness doesn’t mean your life will be filled only with difficult moments.
As Albus Dumbledore once said in Harry Potter and the Prisoner of Azkaban by J.K. Rowling: “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”
Emily during the hospitalization in which she was diagnosed.
You have just heard shocking, life altering news. You are overwhelmed, scared, and apprehensive about what all of this means. You do not understand why it happened to you of all people. The stages of grief are starting to settle in. What I want you to remember is that you are strong. You are a warrior. You can do all of the tough things. Things feel really tough right now and there may be challenging at times ahead, but you have the strength to overcome it and will come through stronger because of it. I believe in you!
I know you are scared, and life will be really, really hard at times. Despite this, you are 26 now and very happy with where you are in life. You have bad days where you are stuck in bed all day, but that does not mean you have a bad life.
You are built to handle even the hardest battles. You are stronger than any struggle you will face. I am proud of you for facing these past 9 years of Crohn’s with resilience, patience, determination, and strength. Your life is not defined by this illness. It’s defined by the incredible person you are becoming each day. Whether you’re 17, 26, or anywhere in between, you are remarkable.
And honestly? I’m excited to see where you’ll be in the years to come. There will be challenges to overcome and more joy to be discovered. There will be moments that surprise you. You will find strength you never knew you had and find happiness in places where you least expect it. I know today is hard. Hang in there and believe in yourself. You are incredible and I love you. Xoxo xoxo,
Your Current Self.
Born and raised in Pennsylvania, Emily was diagnosed with severe Crohn’s Disease with complications in 2016 at age 17. Being 26 now, she wants to help bring awareness to IBD. Emily just graduated with her 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.
