Tearing Down My Wall

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.

14 thoughts on “Tearing Down My Wall

  1. How did you know how I am feeling exactly today??? I was just crying in pain, thinking I did something wrong, like ate a nice family meal, did the laundry and a few extra things around the house. Crohn’s disease has not rhyme or reason!!! I can feel well for a while and BOOM, running to the bathroom and curling in a ball with pain. I felt guilty taking my pain pill, but I tried for 4 hours to see if rest would help dissipate the pain to no avail. 😕. Thanks for sharing and making me see that I don’t need to feel guilty! Crohn’s disease is NOT my fault!

  2. Pingback: Tearing Down My Wall | Crohnie Man
  3. Christina, you did it AGAIN. I think, perhaps
    All if not most IBDers can relate to the sweating in the bathroom, memorizing every piece of lint on each tile, and instead of self-soothing, having compassion, we do JUST as u say..
    My mom, til this day, cannot figure out why I didn’t tell her about my symptoms (I was still a kid, a young teen, when chronic illness came to nest.) It was shame.
    Even as a child, I was wondering what I was
    Doing to CAUSE THIS.
    I, thankfully..DEEPFULLY GRATEFULLY, do not have long bathroom “sessions” anymore.
    Am I grateful for an ileostomy? Darned right. Now, that says something about pain relief, right?
    Anyway. You always hit that “spot” of common ground, and that makes us all feel less alone, wherever, whatever..be it in the bathroom, crying in pain and guilt or anxious or sad..
    I PRAY that Humira helps you, I truly do.
    I pray that u get relief from this monster.
    You are amazing.
    It’s not your fault, Christina.
    It’s not my fault.
    It’s not our fault…..
    I hope that in the busy-ness of every day you take some time to take some time take CARE of you..
    Not with pressure and expectations,
    But because you are a person worthy to
    Be well cared for, by others…
    …and by yourself.
    With love and wishes for a HAPPY Christmas and Blessed New Year! <3 Christina

  4. Thank you for your words of wisdom. I has been thinking about the guilt that seems to go a long with chronic health disorders.
    The thoughts of if I just did this or didn’t do that I would be better.
    Or the you aren’t sick enough for….
    Just wears you down as fast as the disease its self
    So again thank you for putting into words the ways many of us feel

  5. My heart goes out to us IBDers, all the mental torture we go through which you have described so well here, Christina. As if the physical torture isn’t enough! I too try to figure out why one day I’m in severe pain, and one day I’m not. Sometimes in the middle of the night I worry that my bowel wall is just going to wear through, and then I’ll be in dire straits. Two months ago the remicade worked; why not so well now? Do I have a bad attitude? Not positive enough? I too try not to take painkillers and suffer for up to 18 hours until I can’t take it anymore, and then feel like I’ve failed because I took a pain med. And then when i’m not in pain, i’m waiting for the other shoe to drop!This is crazy thinking. We each need to treat ourselves the way we would treat a loved one-with a lot of love and compassion.

  6. I know how you feel. I struggle with the weight gain from steroids. In fact today I spent a lot of the time in the mirror hating on myself because I don’t like how I look. I spent a lot of that time thinking about the ex that dumped for a girl who looks like a younger, skinnier, and healthier version of me and I am alone. Why do we punish ourselves when every one does a good enough job of that?

  7. amazing article. hit the nail on the head for me today. I started writing an article about feeling guilt living with crohns and colitis but felt too guilty to post the contents. I’ll rethink it after reading this. Keep it up, you’re amazing.

  8. Pingback: Heart in the Wall | Eye Opening Literature
  9. OHMIGOD! This is totally true! I can’t even remember how many times I’ve come across something and thought “Aha! I’ve cured myself!” and then it totally goes to shit again. And on top of feeling guilt that I obviously did something wrong, I also feel shame and embarrassed – look at how I told everyone how much better I am? I told everyone that I’ve figured out how to prevent flare ups…and then a flare up comes and I just look like the ultimate failure with an audience to pity me.

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