Happy Thursday everyone! So today is World IBD Day, a day where we try to spread awareness for those who have been diagnosed with Irritable Bowl Disease. I thought since starting back up in writing and in honor of this day I’d retell my story for those who haven’t followed me in the past and share the struggles and successes I’ve had. Most people I’ve come in contact in my life with never even know I’m sick till either they get to know me really well, or I experience bad symptoms while with them (aka potty emergency or severe stomach pain). I’m very comfortable sharing this part of me but it’s never the first thing I necessarily want someone to know. A normal reaction from someone who hasn’t experienced IBD or lived with someone with it is: “well you look good! You don’t look sick!”. We know this, but if you had the same opportunity as my doctor does being able to look at my insides you’d think differently. Have you ever had a canker sore in your mouth? Or a blister on your foot? That’s simply a good way to describe what Crohn’s actually LOOKS like on the inside. It is painful and debilitating, but looking back I never thought I’d say this… it’s not all bad.
I was diagnosed with Crohn’s Disease in middle school. I was 13 years old and a very active person. I danced competitively for years and as sick as I was it never kept me from missing a practice or competition. Before my diagnosis I was very, very sick for a few years. It was like pulling teeth to try to get my pediatrician to send me to a specialist. Teachers, dance instructors were coming to my mom thinking I might be anorexic because I was so skinny and didn’t eat much. Finally when I had a colonoscopy, the truth came out. That was a very scary day. Being a young teenager I had no idea what to think. The one thing that scared me the most is that this is an UNCURABLE disease. I may have times of remission in my life, but it will never go away.
After my diagnosis we now were faced with the decision of how we are going to treat it. Most people respond to the first, second, or third medication they try or if they get sick very fast end up having surgery. Well, neither of these cases were me. I tried medication after medication and steroids were really the only thing I’ve responded to. Some medications worked for a short period of time and others the side effects were too severe. I’ve lost count at this point but I know I’ve been on at least 20+ different medications over the years and at times taking 10 or 12 pills a day. As a teenager, this wasn’t an easy thing to cope with. I was in and out of the hospital, and consistently spending days on end on the couch. I hid it for a while but at times I felt like an outcast. I missed school all the time and finally my senior year of high school we had to make arrangements to go in every day late because mornings were AWFUL for me. Thankfully my mom, who has been my rock through it all, knew how important keeping a social life was for me and fought with the school so I could still participate in out of school activities regardless of the attendance policy. During that time I was also told by my doctor in Springfield we were out of options for treatment because my case was so hard to treat. We were forced to go out to Boston, which was probably the best thing we ever did. I can thank my doctors out there that all of my intestines are still intact!
But people don’t realize how wearing this is on a person’s mind, the depression it can cause and how unpredictable it really is. Our social life and even a career can be completely taken away at any given moment, the fears we have doing every day activities can be unbearable, it’s not easy. But, that is why I am writing this, it is why I do this. I want to open people’s eyes to how we live, what we need, and also what we can give from our journeys. I also want other IBD patients to know they aren’t alone in this all. It’s okay to reach out and ask for help coping with it all.
Like I said before, IBD isn’t always bad. I could go on and on and on and onnnn about all of the reasons this disease could have potentially ruined my life. I’ve been turned down from dreams I’ve wanted to accomplish, I’ve had accidents in public where I was completely humiliated, I’ve sat countless days in the hospital staring outside as the world continues on. Yeah sometimes we have bad days, we do feel bad for ourselves and that is completely normal. But, I’ve succeeded in surviving with this illness by identifying the good in it all. And I want more IBD survivors to be able to adapt this mindset. I’m a better person because of my diagnosis. I have learned to empathize instead of sympathize with people. I don’t take things for granted because I know they can be taken away in an instant. I also am no longer a judgmental person. I’m sorry but being completely honest after you have excuse my French, shit your pants at an age that it’s not normal lol, you lose the tendency to be judgmental. Over the years so much has changed with the way I live my life and I have Crohn’s to thank for that. Yes, I just said thank you to my disease. I embrace it and the qualities it has given me. I am a strong person because of it, I have to be. Yes we break sometimes but the strength it has given me outweighs all those times I’ve broke. I have many people around me I can thank for all of the support they have given me. You know who you are 🙂
It’s each small act of kindness that can truly change the world. So today, I challenge you to do something nice for someone else. We are all fighting different battles; you could be the reason someone no longer has to hide their struggle. And please in honor of World IBD Day share this post, wear something purple, and help me spread awareness for those who are fighting IBD!