Finding my place in the IBD community
Published: May 17, 2021
Fourteen was an extremely difficult age to be diagnosed with chronic illness because there were already so many other changes occurring in my body. At that age, we are all trying to fit in and be accepted by our peers. I was still in my first few months of high school, trying to find my place, and then I was hit like a train with unbearable pain, weight loss, and many other symptoms. This ultimately led to a diagnosis of Crohn’s disease. This was not part of my plan. This would not help me seem cool to my classmates. It wasn’t cool to come back to school after almost two months of hospitalization.
I felt like everyone stared at me because I was 30 pounds lighter, had a round face from steroids, and looked like a completely different person. It seemed like my teachers and classmates looked at me with pity. This transition back into life post-diagnosis was so challenging because I had to redefine my new normal. I spent most of those first few years in denial and tried to hide this part of myself because I refused to accept that this had happened. I didn’t want to be the sick girl; I just wanted to be like everyone else.
During those first few years, I struggled to find a gastroenterologist who could determine why I was having unbearable pain every day despite being in clinical remission. I knew deep down that something was not right and that this was not the quality of life I deserved. My gastroenterologist stopped getting creative in trying to find a source to my pain and suggested that it was just in my head. I knew that it was not in my head and in no circumstance would I ever fake pain. This was the point when I began to advocate for myself.
It is hard being a teenager and young adult with a chronic illness. Sadly, many doctors may brush off what you are feeling because it doesn’t align with what their textbook says, or your pain doesn’t seem as legitimate because you aren’t a fully educated adult. Luckily, in my case I traveled out of state to a highly esteemed gastroenterology clinic to get a second opinion. The cause of my pain was discovered, and I was put on a new medication.
I eventually started going to therapy to learn how to cope with the mental health aspects of IBD. I have seen many different therapists, and I have found what types of treatment work best for me. I am not ashamed to say that I am in therapy. It helps to be able to share how I am feeling with someone who is outside of my everyday circle. It can be helpful to release your pent-up feelings to someone who won’t judge but rather help you learn how to manage those emotions.
Over the years, I have tried to turn my disease into a positive opportunity for growth and change. I am currently studying experimental psychology at my university, and hope to become a clinical health psychologist who works with patients with IBD and other digestive disorders. I want to be able to help others who are struggling the same way I did, because I believe that it will be rewarding to give back to the community that has given me so much.
Ever since I found my place in the IBD community through the National Council of College Leaders, I have felt so much more confident in myself and I know that I am surrounded by people who understand what I go through on a day-to-day basis. I am so thankful for the platform I have been given on the council. I have always hoped to use it to be a role model and a person that all of you in the IBD community are comfortable reaching out to about anything, because as you know IBD can be an uncomfortable and difficult subject to talk about.
May is National Mental Health Awareness Month, and I hope that through sharing my journey with you, we can all work together to break the stigma surrounding mental health, especially within the IBD community. I want to erase that feeling of being invisible, unheard, and misunderstood. I don’t want anyone to be in the position I was in a few years ago and feel alone and overwhelmed. IBD can have a huge impact on our mental health, but together we can overcome those feelings and provide each other with the support we need to thrive. Sometimes IBD can feel impossible, but just know that there is support available to assist you throughout your journey.
Mackenzie Hood is an IBD patient and a member of the Foundation's National Council of College Leaders.