“Funny how a disease plants you on an island, the world jumbling around you, but never reaching your fingertips. Solitary confinement at its worst. Smell, but don’t taste. Exist, but don’t belong. Now I’ve discovered another soul on this island, and I refuse to let go.” (Excerpt from Chronically in Love by K. Zahm)
Crohn’s Disease doesn’t just mess with your body; it messes with your mind. Am I really THAT sick? Am I being paranoid? Why do I spend hours locked in my room and away from people? Is there something wrong with me? And the list goes on and on and on….
From ages 18-27, I struggled with these mind games, still trying to gain the maturity to handle this disease. Let’s face it, most people diagnosed with IBD are young people trying to grow up, but now we have to grow up while struggling with pain, medications, doctors, school, new jobs, relationships, etc. And so far, I’ve been doing it alone. Along the way I’ve met my husband, kids, and some unforgettable friends, but I’ve always lacked an IBD community. (This is not to downplay my network of non IBDers, because you guys ROCK!)
When I found #GetYourBellyOut, I was in remission. Yes, I was struggling with a scar tissue stricture, but was in remission nonetheless. I discovered a group of people from all over the world, experiencing my struggles. I’ve watched some suffering in hospital, others dancing about in their living rooms despite pain, others snapping some beautiful selfies. This group is a place where we can laugh, cry, seek advice, bitch, moan, cheerlead without judgement. We’re all accepted for who we are, and that’s an amazing thing.
Yesterday, for the first time, I needed #GYBO (and of course my AMAZING friends and family) more than ever.
This last month, my symptoms have shifted, and I had that “oh crap” feeling. What if it’s back? No, surely not. I let my doctor know about the burning, bloating pain by email, and he said if it got worse before my next dilation to let him know.
Dressed in a swanky hospital gown and no-slip socks, I sat on the edge of my bed, describing these symptoms to him before my dilation. The look he gave was quizzical.
“Wait, since when have you had these symptoms?”
Did he not remember my emails? I know he’s busy and all…
This turned into a full on cross examination of questions, detailing the last eight months of my life. I felt interrogated, caught off guard, and my brain just wasn’t grasping what his deal was. Did he not believe me? Did he think I was crazy? Do you see these mind games I’m referring to?
“You shouldn’t be having these symptoms with a scar tissue stricture.”
My mouth popped open and shut. Say what? I mean, I get that. But what does he mean by this? I stammer out something…don’t remember what.
“I know it seems like we’ve been speaking in tongues about this, but I have an idea of what’s going on. I know what to look for.”
His face is cold. His words are cold. Let’s just say bedside manner isn’t his thing. Is he methodical? Absolutely. For the first time in the history of this illness, I ran to the bathroom and had a break down. If you know me, you know I don’t do this. I’m a get-it-together-fight-this-head-on kinda gal. When I collected myself, I got on the group page and posted the incident. I knew I wouldn’t hear back before going into the procedure, but the simple act of getting to share with people who understand was a mental relief in itself.
I woke up to my doctor’s face in the corner of the room.
“Well, seems like every time we go in, we find something interesting. I was able to see through your anastomoses this time, and your Crohn’s is back on the other side of it.”
Maybe it was the drugs; maybe it’s the fact Crohn’s nearly killed me in 2011; maybe it’s because after ten years I’ve hardly had a decent stretch of relief, but the tears wouldn’t stop. Again, I posted to the group, my own facebook page, and started texting a friend who is dealing with major health issues of her own. With doctors and nurses swirling around me, I stuck my face in my phone, my brain fighting to get a grip.
My friend talked me down-big time. As soon as people on the group saw my post, I received an amazing outpouring of support. And of course, on my own page, people were there for me. I know it may seem trite- getting virtual hugs, etc. on social media, but it’s not. Knowing I have people to talk to that share my experiences is a relief, because they reassure me I’m not crazy. It is that bad. I can’t tell you how many times I’ve commented to a fellow IBDer to head to the ER STAT, or get a new doctor, or ask about cross medication, or how to deal with relationships, kids, etc.
I don’t wish to downplay the people in my life who are there for me, because you know who you are, and THANK YOU. I wish to convey that it’s been life changing to have a group of people to talk to who suffer from the same illness. The #GetYourBellyOut community is a diverse one- diverse in age, country, and cultural background, yet we all get along, and we are all there for each other. Whether it’s joking around, posting cheeky pics, or offering advice, the group is a safe haven for those with IBD. I may be stuck on the proverbial “IBD island,” but at least I’m no longer alone.
Thank you Sahara, Lorna, Gem, and Victoria for starting #GetYourBellyOut!
If you like this post, donate to ccfa.uk or ccfa.org to help us find a cure for Crohn’s and Ulcerative Colitis:) And as always, #GetYourBellyOut!