The way that my advocacy life started actually happened by chance. This was not something that I set out to do, and it happened as I was still learning about what exactly Perianal Crohn’s disease was.
I was diagnosed in 2014 with Perianal Crohn’s disease and the diagnosis itself was a bit of a disaster for me. I had no idea what the disease really was and the diagnosis came at a time when my life was crumbling around me. I was unable to work or play professional basketball overseas and my personal relationships were falling apart. After going through all of the tests, barium, pill camera, and colonoscopy, I was officially a perianal patient and still clueless about what I actually had.
After 10 months of testing and fighting the medical insurance company in my attempts to finally receive Humira, I ended up getting the medication through the patient’s assistance program. Once on Humira, I was finally able to start sorting out what punches life had thrown at me. I was able to get back to playing basketball in March of 2015 in Australia, where I had previously played in in 2009-10, but had not returned since. Having this opportunity to return to play was the breath of fresh air that I needed.
While playing in Australia and having a good season, I was asked to write about my history with Crohn’s for a website that found me on Instagram. Once this article came out, I was approached by a young guy on another team about Crohn’s. He asked me how long I had been living with the disease and I told him that I was a newbie and still learning about what I had. Even though I had three surgeries at this point in time, I told him that my mindset was to continue to take on the challenges that Crohn’s was presenting. It was my choice how hard I wanted to work and it was my choice how I wanted to live with Crohn’s. While saying all of this, the young player told me that he had Crohn’s and that this was the first time he was able to not only listen to someone who was fighting and winning, but this was exactly what he needed to hear to help him continue to play basketball. At that point, I realized I was an advocate. I knew that I was doing exactly what I should be doing because I was giving hope to those who struggle with the disease.
In 2016, I again returned to Australia to play and during that season I helped out two other players. One even happened to be my roommate and I did not know that he had Crohn’s! Again, I continued to answer questions and help guide these young players with their battles. Whether it was me just listening to them or helping them get in contact with GIs, I knew that this kind of individual help and advocacy work was exactly what I should be doing. Helping others with their battles became important to me because when I was first diagnosed, I had nobody to turn to and I had to learn everything by trial and error.
I believe that anyone can be an advocate. The most important thing is to listen. Everyone’s battle is different, and this makes the disease tricky. At the same time, we all have the ability to be empathetic and to lend an ear or a shoulder for that person. I always believe that information is power and in saying this, I suggest web pages like the Crohn’s and Colitis Foundation and support groups are a great way to start helping others. As I always say, we are in this together and with a great support team, nothing is impossible!