My Hidden Battle with IBD
For many years after I was diagnosed – I hid my diagnosis. I wanted to keep it tucked away. It was my way of keeping it separate from the best parts of my life. Over time, it became impossible to keep the IBD separate from the rest of my life as it slowly started to impact EVERY part. Navigating health care and the financial impact of IBD was incredibly hard for me as it is for many patients. In the first part of my journey with IBD, I felt incredibly alone, ill-equipped, and in complete denial.
I wish more people discussed the grief that comes from being diagnosed and living with IBD, or any chronic illness. It’s normal to experience resistance to a diagnosis like this that consumes so much space in our lives. In order to transition from grief to acceptance, I had to surrender to the new reality of my illness and confront all of the injustices and challenges of IBD. Some of the new roadblocks had to navigate included the unrealistic cost of medications, the unavailability of restrooms, and the flat-out invisibility of a disease that straight up turns our world upside down.
Like many people, I sought nutrition advice from forums and Google at first. The internet is both a wonderful and sometimes dangerous place especially for health advice. I eventually realized getting advice from strangers without IBD nutrition licensure wasn’t the best idea. When I asked my gastroenterologist for a referral to an IBD-focused dietitian, I was told nutrition didn’t matter. As a nutrition student, I knew it did matter on so many levels. It also mattered because I couldn’t figure out what to eat, and everything hurt when I did eat, causing me to lose a lot of weight. That alone definitely mattered. I also couldn’t find any dietitians who specialized in IBD and understood what I was going through -which fueled my interest in filling that gap.
A year or so into my journey, my cousin reached out to me and let me know he had the same diagnosis as I did. He was incredibly good at connecting with others and inspired me to do the same. He became my first IBD friend who understood me and what was happening. Over time, I slowly began to open up and connect with others about this big but hidden part of my life. Connecting with others with IBD was a bridge to finally feeling heard and seen, and it gave me words to articulate what I had felt for so long. Don’t get me wrong- some people still didn’t get it. There were still unwanted comments from coworkers and friends. But the connection with others gave words to my feelings and validated my experience. It was the anchor to get me through all the hard moments with IBD.
Finding My Voice
I later lost my cousin, which was devastating. He had become my brother through all of his support and encouragement during the challenges of my illness. Shortly after, I had a traumatic hospital stay related to my lack of access to the care and medical support I needed. In short, I had an infection that became septic, and my hemoglobin dropped dangerously overnight. If that’s not enough they found a liver mass too. As hard as the hospital stay was, it was where I found my voice and learned to advocate for myself. I learned to speak up when I wanted something, to ask questions, to own my care, and to say no when I wasn’t comfortable with the plan. The loss of my cousin, and my hospital stay catapulted my interest in doing more for those with IBD. With IBD, we often suffer in so much silence, and I no longer wanted to keep silent.
Sharing New Gifts
I had a small and quiet private practice that was just me that focused on digestive nutrition, but IBD patients were always my favorites. In 2020, I went all in and decided to change the focus of my private practice to IBD only. I also started an Instagram account @crohns_and_colitis_dietitian that grew pretty rapidly as my practice did. Over the past three years, we have grown as a company and transitioned to be a larger practice helping people in the US and Canada. Throughout our growth, we have stayed committed to our top value – Advocacy. We connect IBD warriors worldwide with the best nutrition resources to help them feel less confused about what works, and empower them to be better able to navigate one of the hardest parts of IBD- What to eat! In a world of conflicting information, we help people connect the dots and see the bigger picture. We provide many free and low-cost options for getting support. We also offer some sliding scale options, educational tools, and free webinars.
As I reflect on the last few years, it’s so interesting to recall that the part of me that I most wanted to keep hidden at the beginning of my diagnosis has become such a huge and important source of connection in my life.