Every year May 19th is World (Inflammatory Bowel Disease) day, a day to recognize and raise awareness for Crohn’s Disease, Ulcerative Colitis, and Indeterminate Colitis which are all inflammatory bowel diseases. For the more than 1.6 million Americans and over 5 million worldwide, every day is world IBD day. Every day we wake up and do our best to push on despite our illness and trust me it is not easy. Even the simplest tasks such as getting out of bed, showering and putting clothes on can be extremely challenging and some days we just can’t do it. One of the hardest parts of living with IBD is the uncertainty that comes with it. Will I be able to go to work, take care of myself or my family? Will I be able to make it to school and if I do will I be able to stay the entire day? We never know when that next big flare is going to hit us or how long it will last. We don’t know how long our medications will continue to work, hell sometimes we don’t even know if we can even afford the medication we desperately need. Living with a chronic disease is insanely hard, and living with IBD is no walk in the park.
One thing that is important to know is that every person’s disease is different and specific to them because IBD is extremely complicated. What may work for one person might not work for the next. When people ask me what it’s like to live with Crohn’s I often have no good answer because it’s so hard to describe. I try to make it relatable to them so I usually say have you ever had food poisoning or any type of stomach illness where you were nauseous, vomiting, diarrhea? I then say try living with that almost every day of your life but add in anemia, arthritis and bone problems, skin problems, eye problems etc. It’s way more complicated than your everyday “stomach bug” and it just doesn’t go away. Unfortunately, it can’t be cured but thankfully most often it can be managed.
Despite all of the hospitalizations, surgeries, secondary diseases, and the medical debt I am thankful for my Crohn’s. Why? I tell people this all the time but when I was diagnosed someone very close to me said “you can let this situation make you bitter, or you can let it make you better” and I chose to be better. I became an advocate for the disease to help other patients and that has been the most rewarding thing I have ever done. I have been able to travel across the country and use my voice to help all IBD patients, I have made lifelong friends because of this disease, friends who have the illness and just get it that I can text or call anytime to vent. My disease has also pushed me harder than anything to be a better person and to learn as much I can about science. It hasn’t been easy but after 8 years I graduated with a Bachelor of Science in Biology and a Master of Science in Biology with a lot of research experience. There were plenty of days where I truly did not know if I could finish or would make it but people encouraged me to keep going. There were days that were filled with crying and self-pity. There are days I feel like I just can’t go on, then I think of the people who count on me such as my wife or other patients who need to see someone succeeding because maybe they feel like they can’t go on.
Why do I do what I do? Because of you, and me and everyone who feels like they just can’t get through another day with IBD. You can do it. One day, one minute, one second at a time you can do it. There will be days where you may not be able to get out of bed and that is okay. There may be days you make it out of bed but not out of the house and that is also okay. There will be days where you are frustrated and mad because of your disease and that is still okay, take a day and be mad and cry and yell if you must and trust me it helps. Just don’t forget that you are stronger than IBD and you can beat it.
So this World IBD Day I challenge you to think about what your disease has made you thankful for and share that with everyone. If you don’t have IBD but know someone who does maybe send them some encouragement because that goes a long way or even ask them to share their story about living with IBD with you. Whether it has allowed you to meet people you would never have met, showing you truly how strong of a person you are or even just made you more empathetic towards others. World IBD Day is a day to raise awareness for the disease. Awareness is so important because it makes our disease known to the world and the more people know about it, the more funding that can go into research to find better treatments and hopefully a cure. One of my favorite thing I heard someone say was: “Won’t it be great when we come together, not to work towards a cure but to celebrate its discovery?!” IBD takes a lot from us, but if you look around you may just see it has given you some pretty awesome things.
