Why I Write About My IBD

In my experience, writing about my life with Crohn’s disease has felt like a good way to share my story with others, to grow and expand my community, and to be open about living with a chronic illness. I have also found that writing about my experiences has been incredibly empowering for me.

Sharing my stories out loud

In the past, I had a small personal blog which was started back in 2007, before I got sick. I studied abroad during college, and a small number of my family and friends read my blog to keep up with my adventures oversees. I decided to continue it post-graduation, as I learned that I loved to write. In fact, I needed to write. I was ready to abandon the many running word documents on my computer and the shreds of notebook paper I had saved in a folder, and instead, share my stories out loud.

Around the time that I began exhibiting symptoms of Crohn’s disease, my world shifted, and then changed, and then fell off its axis completely. I began using my blog as a place to share the symptoms I was experiencing, the things and the moments I was desperate to put together, to understand, to label, to treat. I saw a handful of doctors. They ran a small number of tests. The answer I was waiting for – it didn’t come in that season. I attempted some remedies, various medications, and saw some improvement. I thought the worst was behind me. I went on to both live and write about life and love and loss, things that started deep in my heart and gravitated to my head.

Being sick became my main focus

A few years later, everything changed. I was sick in a way nobody could fix. I was dropping weight, losing consciousness, struggling to function, to move forward, to move at all. Being sick at that time was central to my life and became my only focus. During a very long hospital admission, I had been otherwise dormant on social media, and I decided to share a link to my blog on my Facebook account. I figured it was the best way to update everyone I knew and loved all in one space. Five hundred and seventy-five people read that post.

When I returned home from that hospital stay, I publicly shared another post I had written detailing my recent health struggles. The universe had told me that my life needed to pause, and I didn’t really understand what all that entailed. I most certainly didn’t expect it. So, I did the only thing that made sense to me. I wrote.

Sharing my life meant sharing my health

From that day forward, sharing my life meant sharing things related to my health, too. In addition to sharing things I accomplished or I was proud of, I also started writing about my challenges and my moments of vulnerability and weakness because I wanted someone else, anyone else, to know that they were not alone.

I have learned so much during the several years since then.

When we’re fighting with things that scare us, things that are bigger than us – chronic illnesses, chronic pain, things that we’re embarrassed by or hurt by or confused and troubled by, things that have shaped us, influenced us, made us in part or in whole who we are – it can be incredibly difficult to determine when or how to reveal those things to others. I got tired of constantly wondering which was a better choice for me - holding tight to my secrets and the difficult things I’ve experienced, isolating myself from my family and friends, or risking oversharing, exposing what I’m feeling, what I’m breathing and living and possibly even drowning in, and opening myself up to that vulnerability.

It’s so hard to find the right moment to say “I’m broken, but I’m beautiful too.”

“I have cracks in all of these places, but I’m convinced that’s where the light floods in.”

Letting go

After spending so long standing on the brink of sharing versus hiding, I have truly come to believe that for me, letting go is so much healthier than holding on. Now, don’t get me wrong, this often requires a significant amount of courage. But, I have found that it also prevents me from feeling so isolated and alone. It offers me support and space to live my truth without hiding or making excuses. I decided that being real was the best option. Now, this doesn’t always mean I share every detail or every experience. But I am open about the things on my mind and in my heart, how my health is at any point in time, and the things that are making my life easier or more difficult during a given season.

Guidelines I follow

I stopped keeping a personal blog two years ago, but I have contributed to many other writing spaces in the time since then. Whether I’ve written posts for friends or professional blogs, I’ve complied materials to share with newly diagnosed friends, or I’ve composed articles for InflammatoryBowelDisease.net, I have followed these guidelines:

1. Am I comfortable with any individual knowing this piece of information? Once I share something, I cannot take it back.
2. Is this something I am still going through? If it feels difficult, it might be worth waiting until I am open to receive the comments and feedback that will undoubtedly come my way.
3. Am I giving myself permission to share when, how, and what I am ready to, and not a moment beforehand? Am I feeling okay about declining requests or turning down writing opportunities because I am not ready to release certain pieces of my story into the interwebs?

These rules have served me so well, and today I feel incredibly comfortable being open with many aspects of my health journey. I find it imperative to check in with myself before I publish anything, to ensure that it feels okay. And then once I hit submit, I look forward with the same hopes I have had since I started writing about my IBD. I hope that somebody, somewhere finds some benefit to what I’ve shared. That somebody, somewhere might feel less alone, even if just for that one moment in time.

This, this is my reason. This is why I write about my life with Crohn’s disease.

I'd love to hear the reasons and motivation why you write about or share your IBD story!