I’ve spent the last eight years dissecting my every action, and listening to others who love me do the same.
“Is it something you ate?” They’ll ask me (not out of malice but in a genuine attempt to help). ”Is it something you did?”
And I will wonder. No, that’s not honest–I won’t wonder. Every time I inject myself with Humira and I don’t get better, I feel somewhere deep in my bones that it is my fault–that it must have been something that I did.
When I wake up in the middle of the night and run to the restroom and start to shake with pain, I go through a mental list of everything I ate. It’s lonely late at night when my family’s sleeping peacefully, and it’s in these moments that I build the wall that separates me from everyone else.
“I should have picked the mushrooms out of that dish,” I tell myself.
“How dare I eat two solid meals in one day.”
When the pain doesn’t come and the nights are quiet, I sort through my every choice to find the secret to my relief. If I slept 10 hours the night before, I will sleep 10 hours again. If I ate soft foods, I will eat bread.
“Who needs pesky vitamins and minerals, anyway?” I’ll ask myself.
“I don’t. Not when I have the chance to feel like I used to again.”
But nothing lasts forever–it never does. I’ll know this when I stare at my bedroom wall, the sound of my kids laughing a few rooms away. With my knees to my chest, I will berate myself for trusting that bread and sleep would do the trick.
“I’m so stupid,” I’ll tell myself, “To think I’d found the formula to my Crohn’s success.”
I know, now, that I’m not the only one who does this. Guilt and self-blame take center stage in the inflammatory bowel disease community. We talk of grasping at straws–some more promising than others. We throw around words like “natural” and imply that others who need medication are somehow not trying hard enough. We go on diets and tell ourselves that we’ve discovered that one trick. We share it with others and swear that it will work for them, but it might not.
And when it falls through for us–when that one diet doesn’t work, what do we do?
We blame ourselves.
We don’t blame the fact that we have a unique disease the mechanisms behind which even the world’s top scientists don’t fully understand. Instead, we take it upon ourselves to criticize the things we can’t change, including the daily stress that comes from having to work hard to support our families. And if we can’t relax–if we fail at Yoga or meditation or fail at benefiting from therapy–we feel at fault.
I didn’t choose Crohn’s, but I can choose to give myself a much-needed emotional break. I can eliminate some foods that make me flare, but my body acts in ways I can’t predict. What works for others, won’t work for me and that’s okay.
All I can do is to try to choose peace in those painful moments, and to work hard to remove the wall that I have built.
I may have Crohn’s disease, but I will be damned if I will continue to let it have me.