Christian is co-chair of the Patient Advisory Council and a young black man living with Crohn's disease. He delivered a powerful #IgniteTalk at our Fall 2020 Live Online Community Conference. Read a written version of Christian’s Ignite Talk below:

When I was kid, just like it was yesterday… I remember spending time with my brother catching grasshoppers together in our front yard. I remember not staying focused on my schoolwork but always being nosy as to what the older kids were doing at my school. Wishing and hoping that one day I could be just like some of them. I remember being clumsy and falling multiple times while playing or just riding my bike. But now, I’m older and it has become a challenge to get back up.

Little did I know that one day while riding my bike at aunt’s home, that my adolescent years would take a major shift. I would spend most of my time as an 8-year-old little boy back and forth at the doctor’s office to figure out what was wrong with me. I was told by my doctor that I had hairline fractures within my right arm and left leg. My doctor gave me a cast for the injured bones along with providing me medical equipment for movement. I cried as I saw my mother and witnessed her strength in the process. My mother faithfully put my wheelchair in the car every day for me to go to school. Going to school was a challenge and required me to leave from class earlier than my colleagues due to the building not having a wheelchair ramp.

Weeks later, I began to develop stomach pain, loss of appetite, and I lost a lot of weight. My family and I were still left with a ton of questions as to why one bike incident could lead to digestive issues…

My primary care doctor could not provide any explanation or comfort to help us to understand what was wrong with me. Maybe he hadn’t seen something like this before? Or maybe he just didn’t want to tell us that we should have gotten a second opinion from a specialist? 

My mom spent hours researching home remedies, calling other naturopathic doctors, calling family and friends but NO ONE could give my family any answers…

Memorial Weekend of 2008, my parents rushed me to the hospital. My condition had gotten so bad to the point that my mom and dad were concerned about my well-being. I was in constant pain most of the time and I had not gained any weight. While in the ER, we were told that I would be admitted and undergo a series of tests to determine what I suffered with. After a colonoscopy, labs, and other treatments my diagnosis was given to me as Crohn’s Disease. My doctors told me that we would try some treatments to find what works best for me. They put me on steroids and Azasan to treat my Crohn’s.

My disease got so bad that I began shutting everyone around me out... I told myself that I would rather not let anyone know because I know all they are going to do is worry and stress out about me. So, I would lay prostrate on the floor, crying in silence, hoping and keeping my beliefs that one day I would see a day without pain. Some days, that mindset of days without pain turned to just I was hoping that someone would kill me or thoughts of killing myself. Only because I felt alone, I didn’t know who to trust.

When I went to the waiting room at my center, I didn’t meet people who looked just like me. Who were African American and had a severe case of IBD.

Most of the people I saw in the room were much younger or way older than me. I felt like I had to struggle with it alone. Who would be there for me? Who would hear how I felt about my treatment? Who knows how this feels? Were some of the questions that went through my head all the time. Later on, in my early teenage years, through support groups and other relationships, I was able to finally meet people who looked like me. These IBD friends were my age and most of them came from various diverse races, cultural and ethnic backgrounds. I heard their stories, shared in their same frustrations, and laughed with them. I was finally able to have a community who understood exactly what my disease felt like.            

Nothing really worked for me until February 2015 came. 

I was rushed back to the hospital. I was 66 pounds, malnourished, fatigued, and just ready to give up this battle with IBD. I had tried everything from shots, pills, enteral nutrition, infusions, and other treatment options. I was tired of having to cry myself to sleep, continuously shutting my family out, falling asleep in classes from being so tired. I was ready to give up.

After a series of tests and procedures, the doctors told me that I had 8-10 inches of my intestines that was 80-90% closed. It’s a miracle that I am still alive today. They also told me that I would need to make a choice to have surgery or not to have surgery. After a long time of thinking about it, I decided to have surgery.

Post the operation, I was informed that 18 inches of my intestines were removed. Prior to the surgery, I asked the surgeon to remove the diseased portion of my intestines but cut it open and snap a picture so I can see what was inside of me. The surgeon did and sent it to me and I still have that picture on my phone till this day. Before I was discharged, my doctor came and apologized to me and my family because he did not know that surgery would have been the solution to ending the long years of pain that I encountered.

With the continual conversation about racial inequality within our world, I share my story with you as my ICN family, not for your sympathy or not to point the finger at anyone. I share my story with each of you today to share with you how you can be the change when it comes to racial and ethnic relationships within healthcare.

We need to engage with our communities in which our centers are located. Engaging with diverse cultures can help build relationships. It also allows open communication. I believe that if I met more people who looked like me (as a minority) earlier on in my story, I would have not felt so alone.

I am thankful and grateful for this network that is dedicated to improving the lives of patients across the globe, but I am especially thankful for the PAC. The PAC allows me to work with patients all over to create resources, raise awareness, participate in a support group that understands how it feels to deal with a chronic illness like IBD. Being a part of this group and this network has been the best thing to ever happen to me. I challenge care providers to connect patients who look like their skin color or culture to other patients within your local center or through ICN.

You might not have the same family demographics as the patient you treat or engage with but building a trusting relationships will allow your patients to be fully transparent with you about how they really feel or what’s happening in their personal life.

People will never know how much you care until you show them how much you care.

In closing, I support and applaud the leadership of the ImproveCareNow network for their inclusion and diversity plan for community members. They have worked very hard to make sure that the minorities specifically more blacks within the community understand their commitment to racial equality. I commend and applaud you care providers, patients, parents, and other constituents for your dedication to addressing racial issues.

I encourage us all to remember that we are able to be the change that we want to see. It starts with us.

Thank you ImproveCareNow!


Experience Christian's Ignite Talk:


Sign up for blog updates and never miss a post! 
Join our CIRCLE! Connect with a welcoming & supportive community, and receive IBD resources, community stories, and ImproveCareNow updates & opportunities. 

Read more #IgniteTalks on LOOP >>

Read more posts by Christian on LOOP >>

Built by Veracity Media on NationBuilder