Friday, March 23, 2012

A Confession


I have Crohn's disease.

I have tried draft after draft of how to get that simple sentence onto this (metaphorical) page, and the truth is that I've had trouble writing it because I've had great difficulty saying it for the past nine years.

I thought stating the facts was akin to signing an unholy contract. I was afraid that by calling it by its name, I was cursing my body and cutting myself off from a full, vibrant, and satisfying future. I thought that if I didn't own it, then it wouldn't own me.

I was given the diagnosis by a doctor who was not gifted with people skills. He spoke the words "incurable" and "for the rest of your life" in his detached, clinical voice and they hung in the air around me like thick clouds of smoke--distorting my view of reality with their haze and stifling my breath.

Maybe he also said "and can be managed with medication," but I can promise you that I did not hear any of those words that day. In fact, when I pressed him about how "normal" a life I would lead, he admitted that he didn't know any patients my age with Crohn's who were even able to bear children.

And the smoky haze thickened.

I didn't know how to integrate those words--that pronouncement--into my reality. So I simply shut my eyes and tried to forget that I ever heard them.

Though I never denied I was sick--and sick I was--I danced around the issue. I'd say, "Doctors don't agree about what's really going on with me" (because I wouldn't let another traditional doctor get close enough to me to confirm it). Or "I'm having some intestinal problems" (the understatement of the decade). Or my personal favorite "I'm getting it under control with a new diet" (which inevitably left me sicker, malnourished and once in the ER).

I couldn't face it. I couldn't bring myself to look it in the eyes and see it for what it was. It's amazing how those two little words--Crohn's disease--turned into this big, looming monster that taunted me in the dark and tortured me in the day.

The taunting and torturing waxed and waned until about a year ago. I finally admitted to myself that denying I had Crohn's disease wasn't getting me what I wanted; I wasn't getting better. So I pushed through every defense mechanism I had so carefully erected and planted myself in front of another doctor (this time one with kindness and compassion) and got started on a regimen of medication.

I also sat down and read every pamphlet on Crohn's disease that my doctor sent me home with, pamphlets I had spent years avoiding--afraid to even touch and hold them, as if the words themselves harbored contagions that would make my illness worse. Though my first instinct was to throw them away, I didn't. I read them through and acknowledged the value they had in bringing me out of denial, and I cried cleansing tears.

That night I admitted to myself that I wasn't just sick, I was sick with Crohn's. And, of course, instead of getting worse--as I always feared I would--my body actually began to heal.

I also made a decision. I decided that I was going to enjoy my life. I decided to divorce my belief that Crohn's disease was a predictor of my future. I decided I was going to have a good life in spite of Crohn's.

It would be an oversimplification if I ended the story there--as if by coming out of denial and deciding that I would lead a healthy, satisfying life that it became true. It hasn't been that simple or easy. But it has become my reality. I realize that I have decades in front of me, and no one can predict what they hold. But I can guarantee this: I'm going to be okay.

Sitting on my couch that night--with tears streaming down my cheeks--staring at words written about the thing that had caused me such overwhelming pain, I learned something. It's the reason I'm writing about this today.

I lived in denial for so long because it served as a great buffer between me and an even more familiar foe: Fear. And fear--like a looming monster--lives in the dark. It can't be exposed or expelled until it is brought into the light.

No one ever got over a fear by keeping it hidden. It just doesn't work that way. It needs to be aired out in the sunshine on the laundry line, flapping in the wind for all to see.

So instead of reinforcing my fear by shying away from a simple truth--I have Crohn's disease--I am bringing it out of the dark again.

I'm not going to deny that I'm still sometimes afraid. Afraid that by talking about Crohn's I'll open up a pandora's box of symptoms and emotions that I have been successful at keeping at bay. That somehow--superstitiously--putting it out there that I'm getting healthy will open the door for sickness to come in again.

But I'm pushing through. Because my house doesn't have room in it for looming monsters anymore. The only way to get free of fear's intimidation is to do the opposite of what it tries to influence me to do.

Fear says: "Things are going so well. You don't want to rock the boat. Just let things be the way they are. You don't need to tell people about your victories. Just hide them away. You'll keep them longer that way." Fear is a hoarder. And hoarders store and store up and they can never get enough.

So I'm resisting my urge to shut down and keep quiet. I am putting my truth out there: I have Crohn's disease. And it's not the end of the world.

That's my confession, and I'm not ashamed to admit I hope that by reading mine you'll be encouraged to make your own.

Maybe you don't need to publish it on the Internet, maybe you just need to whisper it to your own reflection in the mirror. Maybe you need to speak it to a friend, write it in an email, or shout it off a mountaintop. Whatever you do, just don't keep it in the dark.

Embrace your reality. Bring your fear into the daylight. Own your truth. Love your life, and (as the saying goes) it will love you right back.

18 comments:

  1. My sweet cousin, I am in tears I am so proud of you for making this step. I know that it hasn't been a easy road for you and your family and that this is a big step for you. I know how you feel some times I feel like if I say my UC is under control to someone that the next day I will have symptoms. But isn't true. We need to have faith and embrace it. You know I am always here if you if you want to talk. I was diagnosed 12 years ago. Everything you said was so right. Don't keep it in the dark. Life doesn't stop unless we let it. I love you so much. Jaime

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    1. I thought of you the moment I published this post. I thought, "Oh Jaime will get it." Like you said, "Life doesn't stop unless we let it." I guess I could have just said that, it's a perfect summary of everything I've written. Thank you for bringing your experience and wisdom to the table. I love you. :)

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  2. i'm so proud of you ~ brave beautiful woman. your strength and courage inspire my heart every day. thank you...

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    1. Your continued love and support inspire my heart every day. :)

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  3. I am so proud of you my friend! You have been making giant, huge, MASSIVE strides towards healing both mentally and physically and it is inspirational to watch! I love you so much!!!

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  4. Well, victory over fear is no small healing and miracle! I'm excited to watch what is ahead for you Angela. Thank you for sharing your life so vulnerably and honestly! That is a beautiful thing!

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    1. Thank you for your perspective; victory over fear is no small thing indeed. :)

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  5. Your such an inspiration! Thank you for sharing :)

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    1. Lauren! Wow. Thanks for reading. :)

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  6. I was hospitalized and almost lost my leg at 19 due to a blood clot that took up the entirety of my left leg and two tennis ball sized clots in my lungs. Turns out I have a blood disorder that makes my blood clot abnormally... like in your case, I was threatened with the dangerousness of pregnancy - - but through being proactive, I was able to have two healthy pregnancies and beautiful children. Yes, there is fear there. Every day. I could develop more, and this time instead of the ICU for 8 days, it could be life threatening...but I decide every morning to not live as if that were this days reality. Today I live. The rest is not up to me. Hang in there, brave girl. speak your self, claim your body through your words. The rest? Will come as it may.

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    1. Tara, I'm so sorry that you have walked that road. I hear the "I choose LIFE!" cry in your words, and that's where the true victories are won. Keep fighting!

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  7. Angela, this is just beautiful. You are an amazing strong woman! This is so encouraging. Praying for you all the way around.

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    1. Thank you, Jaime. You're no wimp either. :)

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  8. Good for you! I clicked on this through Elizabeth Esther's blog because I was recently diagnosed with Crohn's and have been writing about it on my blog too (under the tag of "health" - perhaps for the same reason you don't like to say you have Crohn's). When I wrote my "coming out" post I think it had the exact same opening line. I still always try to qualify it by saying how it's not that bad, etc, etc, so people won't think I am "one of those sick people". As if the blow to the gut isn't bad enough, it's an awful blow to one's identity.

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    1. Thank you for visiting and for sharing a bit of your story here. I applaud you for "coming out" so quickly. It's a good way to pin Denial to the ground.

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  9. I started my blog after I was diagnosed with celiac disease. I write about a lot of things, but it was helpful to have a place where I could write the words.

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  10. One of my best friends has Crohn's. She has three kids. Cheers to your bravery and your dedication to embrace reality and life!
    P.S. Writing makes me feel alive too (as you wrote in your profile).

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