By Rachel Straining
It’s not just my stomach.
It’s the clumps of hair I had to watch fall out in the shower. It’s the fatigue that pulls you under like a crashing wave in the ocean and you have no other choice but to succumb to its current until you’re able to swim to shore. It’s the countless hours spent sitting in waiting rooms and on the cold, scratchy paper of an examination table. It’s being too afraid to eat that one food again, too afraid to go to that one place again, too afraid that it will happen all over again. It’s not just my stomach.
It’s often just as much mental as it is physical. It’s often just as much whole body as it is, in my case, intestinal.
I think that’s the thing that a lot of people don’t know about inflammatory bowel disease (IBD). I think that’s the thing that people without it will never know unless we say it - that it affects a lot more than just our “stomachs.”
It’s something that’s hard for others to understand because an invisible illness inherently brings with it invisible side effects that remain unseen. It’s something that’s hard to talk about because there’s this socially constructed stigma around it. That’s why I think that it’s something that we have to talk about, on our own terms, in whatever way we’re comfortable.
Because the more we do, the more we can break that stigma for ourselves and for anyone else who is silently struggling and feels like they’re alone because no one else is talking about it. The more we make the invisible visible, the more we can gain back that power. The more we bring light to our darkest struggles, the more we can help guide others to see the moon. The more we illuminate the truth, the more we can live it.
Because the thing is, it’s not just our stomachs. And it’s time for people to know that.
And yeah, there are days when I can put on a fire outfit and a hot red lipstick and stand tall in the face of everything that’s tried to tear me down. But that does not, and will never, take away from the reality of what I’ve gone through and what I’m going through.
Even when others can’t see it, it’s not just our stomachs.
It’s the fear of the future and the PTSD of the past. It’s current care and preventative care, needing to keep things under control now while simultaneously trying to make sure things don’t spiral out of control down the line. It’s attempting to gain control over something that can have a mind of its own.
It’s trying to learn and relearn a body and a soul that are constantly changing, trying to learn and relearn how to live a life that’s continuously evolving with an additional layer of unpredictability.
It’s knowing how much this disease affects different aspects of your life, but doing your best every day to not let it define your life - to not let it define you. It’s working to foster a kind of acceptance that on some days it just feels like it does. It’s working to foster a kind of belief that on days it feels like it defines your life, it doesn’t mean it will forever.
Living with IBD brings with it different things for different people. But I think that, at its core, we can all agree that it’s not just our stomachs. We can all agree that everyone is going through something that others may know nothing about. We can all practice a little more empathy and implement a little more kindness because of it.