My Why

“There is a kind of quiet heroism that comes from meeting these problems and the sentiments they provoke, of getting through each day, or living through the long course with grace and spirit and even humor; sick persons and their families understand the courage, even if most others do not.”

This quote comes from a book: “Suffering, Meaning, and the Human Condition.” It's difficult to find words that more accurately describe the reality of living with a chronic illness. I read those words every day and each day they are a gentle reminder of the courage, strength and resiliency one emerges from when they wake up in a body that is not always their own.

At least for me, it’s something I need to be reminded of. When I was thirteen, I was diagnosed with Crohn’s Disease. A decade later, I’m finally starting to give that fact the recognition it deserves.

When you’re diagnosed with a chronic illness during adolescence, you lose more than your physical health. As you develop, you lose an understanding of what is happening in your body, in what you have a right to and how to advocate for those rights, and sometimes, most importantly, you lose your understanding of who you are to begin with.

What does it look like when your most formative years are defined by sickness, lack of autonomy, and a complete loss of control?

When I was in high school, I remember telling myself: “Crohn’s will not define me and I will prove it.” Straight A’s, every extra-curricular, student body president – nothing was going to stop me and I was going to do everything in spite of IBD. It worked really well and I did it all, not stopping to take a breath and certainly not stopping to think.

However, as I’ve learned, reality always catches up with you. I fell fast and I fell hard.

The next three years of my life were painful – they were full of sadness, numbness, grief, shame and disconnection. My college transcript is nowhere near close to straight A’s. My extracurriculars consisted of what I was able to hold on to while barely keeping my head above water and I fell well short of my expectations in nearly everything. While I was trying to prove that I was more than my Crohn’s, I didn’t realize that I was also fighting an important fundamental truth: while Crohn’s is not who I am, it certainly is a part of me.

My love of school and drive for accomplishment never wavered, but my ability to take care of myself did. As my mental health and physical health worked together to drag me down, it took painful intentionality to recognize that I was not going to make my dreams come true until I really knew how to take care of myself.

I’ve done a lot of work the past few years to live in reality on reality’s terms. No easy feat when you go to sleep every night knowing that when you wake up, your body may not work anymore. Through constant practice and intentionality, I’m increasingly able to be present with myself. What I’ve realized? Reality is harsh, unforgiving and unpredictable. But it’s also beautiful, colorful and compassionate. And I would certainly choose to feel all of it than nothing at all. In fact, it’s a choice I make every day.

Learning to accept the way Crohn’s is a part of me was a pre-requisite to learning how to truly take care of myself – something that had I figured out in college, would have saved me from a lot of pain. I don’t wish I could go back nor do anything over. Who I am now is a result of the lessons I’ve learned; and yet, I know that if I went to college now, my experience would be richer with academic learning experiences, meaningful relationships around me and a better ability to pursue my intellectual curiosity. 

My family taught me that nothing is more important than education. My education has shown me that nothing brings me more joy than learning and that joy has continued to drive a persisting curiosity and hunt for knowledge. My educational journey, much like my journey in general, is inextricably tied to my Crohn’s Disease. My ability to show up, stay present, learn and grow are all dependent on a healthy mind and body.

Recently I’ve been reflecting on the way I am constantly trying to portray myself to the world. I realize how deeply I still feel the need to prove something; that I am always working to show people that I can do anything everyone else can even though I have IBD and that I am not defined by the things I’ve struggled with.

Recently I was very astutely asked: are you trying to prove that to everyone else or to yourself?

To me, IBD University is about showing up. First and foremost – I am not alone, and neither are you. In our journey to prove ourselves, there’s a world of people that want nothing more than who you are exactly in this moment. I’ve learned that the first step is always showing up and I have faith that if there’s the right support waiting for you when you get there, you can be capable of anything.

My passion for helping others navigate some of the difficulties I took on as I balanced a full college career and deteriorating health stems from a deeply personal and passionate place. Education is the most basic right and the greatest of privileges. I created IBD University in the hopes that I can help support other young people trying their best to show up to what they care about while navigating a lifetime responsibility they didn’t sign up for. Potentially someone that just left home for the first time; or someone trying to figure out how to talk to their professor about missing class again; someone who was never formally taught how to make an informed medical decision; maybe someone who is navigating going to the doctor by themselves or someone completely and utterly overwhelmed with what tomorrow will bring. Someone like me.

I want IBDU to be a place to fill in the gaps – a place we can educate ourselves and each other, where we can learn to take control of our autonomy and be present with that which will always be out of our control. Advocacy takes practice, understanding takes intention and growth takes discomfort. These were lessons I had to learn by myself – and maybe that isn’t how it has to be.

IBDU is both my way of asking for help and offering a hand to those that can’t yet realize they are worthy of it. Each lesson I learn reminds me how much I am still growing. There’s something I’m trying to prove – to myself and to everyone else too – that makes it difficult to justify myself as worthy. So IBDU is also a commitment to myself – a vow to continue reminding myself that just like everyone else in my position, I am worthy of help, of support and of grace. Doing things by myself doesn’t earn me anything and leaning on others, opens me up to a world of so much more. The only thing I need to prove is my humanness – it’s certainly the only thing I expect from others.

I am here because there’s not a lot of things I care more deeply about. IBDU has been a work in progress but so am I. My vision for what IBDU could be, what I dream of it to be, has often fell short of what it has been. Several years of ups and downs, of periods of intense work, and long stretches of nothing where I quietly continued to put the work in.  I’m doing the best I can – which I’ve learned, is certainly good enough – and I’m trying to create a space that tells other young people with IBD the same thing.

I have big dreams for us and we’ll get there some day – Crohn’s has at least shown me what true resiliency is. For now, I will put everything I can into IBDU and hopefully along the way, you’ll get a little something out of it.

As I continue on my own journey, I hope to learn from others, and I hope I can help create a space for others to do the same.

So – that’s my why. As someone I respect and admire very much likes to remind me: we are who we are in light of our illness, not in spite of it.

Welcome to IBD University. I’m so grateful you’re here. I hope something resonates with you and at the very least, you can feel at home.

All the love in the world,

Emma