Educating Others on Crohn's and Colitis
Most people can not relate
One of those is that people generally understand and can rationalize things that are foreign to them if it is relatable. Crohns or colitis doesn’t appear relatable. The disease isn’t one-size-fits-all and everyone reacts differently.
My general response to teaching others what it's really like is this:
Have you ever had gastro problems? Well, imagine living with gastro 24/7 while having your period. Now add having to continue living like you're not actually sick. That to me is a quick explanation, but it's so much more isn’t it?
What it's like to live with Crohn's disease
Living with Crohn's for me is like being trapped in a body that is mine but that controls me and hates me. It's being trapped in a body with a full capacity brain, which is ready to go and learn and do, but a body that refuses to play the game and will not let me live.
It’s the fight daily between brain and body. Every day is a question of who might win today.
The body. The pain. The depths of that pain.
Crohn's is all-consuming pain
It’s pain that goes so deep that it is all-consuming. In the depths of the pain, I cannot think, I cannot breathe, and I cannot function. But I have to...
Living with Crohn's is like living with a hum of pain; it’s always there and it's always either a niggling or extreme pain. Its pain that can hurt down to the roots of the hairs on your head. It's pain that causes you to sweat so extremely that you look like you’ve just walked in from a downpour.
The unpredictability of the condition
It's waking in the mornings and not knowing quite how bad today will go. You might wake up feeling like a million dollars! You might eat something for breakfast and not have an instant wave of exhaustion, pain, and the urgency to go to the toilet NOW!
You may have all of that but that doesn’t mean that the moment you walk out that door that the pain won’t hit you like a ton of bricks.
So, only 5 minutes ago you were about to get somewhere earlier, you’d even messaged saying that you were on your way, but now you’re not even going and you're stuck on the toilet.
Living on the toilet
Where you live more on the toilet than that you do in your bed. Those are the only 2 places that you exist in.
The toilet is also the only place that you find moments of relief from the all-consuming pain. It's only on the toilet that you get to pass the pain and the poison from your body.
But that moment is short-lived and in an instant, you will feel the poison creep back through your body. You can feel it take over so quickly that you don’t even remember a time that you weren’t in pain. When it feels like your body is trying to slowly kill you.
There are no breaks from this
Living with Crohn's is like begging your own body to stop just for a moment; just so you can catch your breath so that you can keep going but it never does.
If only everyone truly understood that this is what it’s really like living with IBD, people wouldn’t be so quick to judge and might learn to be a bit more supportive. The only way for that to happen is for those who can to educate and raise awareness and those who can’t, to lead others to amazing pages like this to help use others voices.
Do you keep a food diary to help manage symptoms?