Guest Post by Sarah C.
Katelyn, Sarah, Cassandra & Kenzie
For someone who loves to talk as much as I do, it sounds strange to say that I often don’t want to talk about my IBD. If you follow my Twitter, you’ll see that the majority of my posts have something to do with inflammatory bowel disease. I’m pretty outspoken about the disease itself, but less so when it comes to my personal experience with it. Most of the time, it hurts to even think about it.
When Amber asked me to write this post, I was just beginning a flare. This current flare has lasted over a year with no signs of letting up. I’m sicker than I’ve ever been in my life, nearly housebound and hopeless. But I know that I am not alone. I know that so many others have similar stories. As hard as it is to talk about our invisible illnesses, nothing will change unless we start talking.
I was diagnosed with ulcerative colitis on September 1st, 2011—my 23rd birthday. I had likely had UC since 2009 or earlier, but was constantly told that I was lactose intolerant (even while not consuming dairy) or had IBS. Even after diagnosis, I was told I would be fine—pancolitis wasn’t that bad, it was “treatable” with just 15-20 pills a day. Just over a week later, I was hospitalized and diagnosed with my first C. Diff infection. That was just the beginning.
For someone who was told her disease was “not that bad,” I’ve been pretty sick for the majority of these past four years. I’ve been through six GI doctors, tried three biologics, taken countless rounds of steroids (which I am intolerant to), and lost most of my social life. One of the most painful things about this disease is how it never stops taking. Just when you think it can’t get worse, it does.
But that isn’t the end of my story. For every bad thing that UC has brought to my life, there seems to be something good as well. I have met some of the best people the world has to offer because of this disease. I’ve connected with people who I never would have known existed (and vice versa) if we didn’t share a diagnosis of IBD. I’ve made closer friends in this community than I’ve ever had before. Whatever happens to me, I will always have an IBD family on my side. A family who knows my story… and loves me anyway.
Soon, my story will change.
My doctors and I have come to the joint conclusion that surgery is imminent. This will be my last IBD Awareness Week with a colon. I know my feelings will likely change many times leading up to the procedure, but right now, all I feel is relief. For anyone who doesn’t believe in the severity of inflammatory bowel disease, imagine being in your twenties and gladly accepting surgery that will leave you with an ostomy, because it is truly your last hope.
There is always hope with IBD. Hope that the next treatment will work. Hope that your symptoms will subside. Hope that the next remission lasts. Hope, above all, for researchers to finally uncover the cause of these illnesses.
But we need more than hope. We need a cure. And we will never have a cure without awareness. People don’t want to fix what they aren’t aware exists.
This is why IBD Awareness Week matters. This is why my story matters.
This is why your story matters, too.
Sometimes you might be afraid to talk. Sometimes it will be too much to think about. Sometimes, you’ll think someone else’s story is worse, or you don’t have anything to say, or that no one needs to hear your story.
Tell it anyway.
Because someone needs to hear it.
