While there are an estimated 3.1 million people living with inflammatory bowel disease (IBD) in the United States, no one person’s experience with the condition is the same. Many patients suffer silently, hiding their embarrassing and devastating symptoms from others to avoid judgment and shame.
As I reflect on my personal IBD journey, I realize how this disease has shaped who I am, as well as the relationships in my life, including family, friends, and fellow IBD patients.
For the first 5 years of my disease journey, I went undiagnosed. It was during that point in time that I suffered through extremely debilitating and painful symptoms that only my immediate family knew about.
I hid these symptoms in every aspect of my personal and my professional life — in my career, with my friends, with dating, in my social life, and even with hobbies and activities that had previously been a part of my life.
I was unaware of what the complexity of my symptoms meant, and eventually, a series of misdiagnoses and lack of communication from medical professionals led to two of the absolute hardest surgeries of my life.
Not only was I hiding my mental and emotional suffering from everyone, but I was also hiding my physical pain. While my parents knew everything I was going through, they couldn’t understand why I was going through this. Nor could I.
But they cared for me to the best of their abilities. They received my surgeon’s post-op updates but were not made aware of how hard my recovery would be and what the long-term complications these surgeries would bring. They were parenting me with love, care, and concern, but they were never given guidance on how to be IBD caregivers.
The role of caregiving is complex for people with IBD because even those who love us deeply don’t live with the disease themselves. Therefore, it becomes extremely challenging for us with IBD to be open about how we are feeling. Over time, as patients, we begin to understand our diseases more and more.
But even though our family and friends may mean well, they will still never quite grasp the depth of IBD’s impact on our lives. I believe that the feeling of helplessness impacts many of the family and friendships in our lives.
I was fortunate to have both my parents, as well as my brother, support me throughout my early IBD journey before I was diagnosed.
As hard as it was to undergo the two unnecessary surgeries, it forced me to develop newfound strength and resilience. Because I was uncomfortable sharing what I was going through with others, it made me independent and strong.
Without a diagnosis, yet living with debilitating symptoms, I chose to keep my health private while living in shame and fear.
When I was finally diagnosed, it was almost as if it opened a whole new world for me: an IBD community with my new medical care team, acquaintances (and soon friends) through support groups, and the introduction to other people living with IBD.
Once I openly shared my diagnosis of Crohn’s disease, I realized that I would also gain support and concern from many friends. But I would also lose many of my closest friendships. It goes without saying that you truly realize who is there for you when you’re at your worst.
Over the last 20 years of living with Crohn’s disease, I can honestly say that I’ve seen the true colors of many people in my life, for better or for worse.
I’ve seen friends shy away from talking to me about my IBD. I’ve seen friends ask me about my IBD and ways they can help me through it. I’ve had friends learn more about IBD by asking me questions or researching on their own. I’ve had friends donate to my fundraising and/or attend local events to support me.
But I’ve also had friends distance themselves from me and no longer invite me to social gatherings because of my IBD. I’ve had many friends completely disappear from my life when my challenges became too much for them to support me.
It has made me realize how many friendships were selfish and toxic.
Despite my health challenges, I’ve always given more of myself to others than they’ve given to me. I realize now that although I’ve trusted and confided in many friends, it wasn’t always reciprocal. When I’ve been at my healthiest, I’ve had support from many, yet when I’ve been suffering, I’ve seen people want to avoid these hard times.
It’s truly given me such a perspective on what relationships matter the most to me.
Through the course of my IBD journey, I’ve been extremely involved with the Crohn’s & Colitis Foundation. Little did I know that I would find another “family” — my new “IBD family.”
My first involvement was fundraising for the foundation’s endurance training program, in which I trained for and ran my first half marathon in Kona, Hawaii.
Over the course of the training program, I met many people with IBD, either with Crohn’s disease or ulcerative colitis, who were also training alongside me. When I was struggling, I knew I’d always have someone next to me to cheer me on.
And when others were struggling, I knew I could support them as well. I soon learned my teammates would become some of my closest friends because we were not only on the same IBD journey but also facing the same challenges of training for distance races together.
For many years, my immediate family chose to keep my condition private from our extended family due to the stigma of diseases in the Hispanic culture.
Much of our extended family lives in Peru, where IBD is not as commonly known or understood, and so the assumption made is that IBD is far worse than it is or specifically what it has been for me.
Because I’ve shared more about my journey publicly, I’ve also felt comfortable sharing it with extended family, only to learn just a year ago that I have a cousin with Crohn’s disease. Despite never having known of a family history of IBD, I soon realized that the
My own father received a terminal cancer diagnosis, including both liver and colon cancer. Due to his rapid and unexpected passing, we’ll never know if he also had Crohn’s disease or ulcerative colitis, but I believe there may have been a connection between his health and my disease.
And although I have a young niece and nephew who are both healthy, I do worry and wonder if IBD will ever impact them. It’s for that reason that I have chosen to involve them in every aspect of my IBD life since they were able to comprehend what Crohn’s disease was.
They’ve cheered me on at all my half marathons, they’ve walked with my family and friends’ team at the Take Steps awareness walks annually, they’ve supported me when I was an Honored Hero in Orange County, and my nephew has even fundraised and run races with me for the Crohn’s & Colitis Foundation.
Needless to say, I’m proud of how this disease journey has impacted them for the better, knowing they not only understand what I’m going through if I’m hospitalized or just having a rough day but also knowing they’ll be able to support anyone they may encounter in their lives who may have IBD.
Crohn’s disease has shaped who I am, but it most certainly does not define me. As I continue to focus on my personal health and well-being as a Crohn’s disease patient, I feel more empowered than ever.
As a Hispanic woman and IBD patient advocate, I share my story in hopes of improving the quality of life of IBD patients around the world. If my story can make a difference for even one person, then I will continue to use my voice to raise awareness of IBD. And I hope that the love, care, and concern from the genuine relationships in my life continue to flourish.
Rocio Castrillon, MBA, is an Integrated Marketing specialist originally from Peru and living in Orange County, California. She has been living with Crohn’s disease since 2003. Ever since her diagnosis, she has been passionately involved as a volunteer with the Crohn’s & Colitis Foundation in numerous capacities. Rocio is also a published author, IBD patient advocate, patient panelist speaker, and AGA IBD patient influencer for the IBD community. She believes that one voice can, and will, make a difference for change. She will use her voice as a patient advocate until a cure for IBD is found. You can learn more about Rocio’s IBD advocacy at her social handle: @VoiceForIBD on both Instagram and Twitter.