Calling it Out: Shame, Part I

It's been exactly a week since my sister started my surgery fundraiser.  That small action has called up a perfect Pandora's box of stuff for me to deal with.  I want to talk about it here for two reasons: 1) Naming an issue helps you move past it. 2) I said I wanted to help raise awareness about this disease.  I meant it, and chronicling my experiences might help bring awareness not just of the disease itself, but of the emotional side to it.

I have a lot of shame over this illness.  I don't think I realized how much until everyone I knew suddenly knew that I had it.  I've been thinking a lot about the sources of that shame and I think it stems from:

1. Not being believed for the longest time ("You're just being dramatic" "Everyone has pain sometimes." "Just drink more water." "Is something else going on in your life?  Should I prescribe Zanax?")
2. Not being healed yet, despite many efforts, many doctors, many dollars spent, and way too many medications and supplements.
3. The intimate nature of the disease.  This has been a huge source of embarrassment for me ever since I started having symptoms.  Do I want you to know I missed that church event because I was in pain?  No, because now you know that I was on my period during said church event, cause my period is the source of my pain.
4. Missing out.  A friend of mine once described me as an IOU.  Ouch. I should just muscle through this, right?  Make myself go to things even though I'm in pain?  I also look flaky because, besides missing events I say I'll attend, I now have a hard time committing to anything just in case that day is one of the days.
5. Being weak. I have five sisters.  I'm the only one with this condition.  I'm also the only one who's ever needed surgery for an illness rather than an accident. I.don't.like.this.

Those are the main sources of my shame, and here are the truths I've been trying to tell myself to combat that shame (you could be praying these things for me too - and speak them over other women in your life who have similar diseases!):

1. On not being believed: I don't need other people's approval.  I know this pain is real.  And I know that many other women have had similar experiences to mine in not being believed at all, and not even being diagnosed until they were 10 or 12 years into the disease. I am not alone in this.  One story I remind myself of is my friend's mother-in-law, Sara.  She's from an older generation where this disease really wasn't understood or tolerated.  Doctor's not only disbelieved her, they put her on anti-psychotics.  She became an alcoholic to deal with it all (the physical pain of endo and emotional pain of being thought of as insane). Finally in her 40s, a doctor knew what was going on, told her about it, and performed surgery for her.  After the surgery he gave her photos of her diseased organs and wrote in Sharpie all across the top, "Sara's NOT crazy!"  (And if that story doesn't make you cry, I don't know what will.)
2. On not being healed yet: God has a plan.  The outpouring of love I've had from friends, family, and perfect strangers since deciding to have surgery has been so healing to my heart.  It's a long story, but the love of others is healing me from several years of heart-breaking events.  If I didn't need surgery, I would never have experienced this outpouring.  God is good.
3. On the intimate nature of the disease: Women have periods and everybody poops.  GET OVER IT.
4. On missing out: I may have looked flaky all these years, but I'm not a flaky person. I am incredibly committed to everything I do.  In fact, I had to quit college on two separate occasions because of health and finances (which go hand-in-hand) and both times went back to finish, completing my B.A. in linguistics in 2010 at the age of 28.  
5. On being weak: We are all weak, we're all just pretending not to be.  We are all mortal.  We are all needy.  It is good to have a physical reminder that turns me to the Lord.  Not everyone has that blessing!

Alright, lunch is over and I have to get back to work.  Later this week I'll post again about shame in asking for help.

Good Reads: The Happiness Project

This + Stairmaster = me getting through my workout.  I highly recommend it!  Any workout reading suggestions for when I'm through with it?

This week I

• decided to have surgery, which I've been trying to avoid for more than half a decade
• made a video talking about my chronic pain and posted it publicly on YouTube for the entire world to watch if they wanted
• asked everyone I know for money for myself, and
• sat back and watched this unbelievable response of love and support from them

I'm a processor who journals or blogs her brains out about everything.  Just one of those bullet points listed above would require a month, at least, of processing.  And all 4 have happened within the span of a few days.  I'm a bit on overload right now, like that little colored spinning wheel that pops up when your Mac just can't handle all you're asking of it.  Can't journal.  But it's been great for working out. ;)

Unbearable grace

On May 11th I swallowed a pill called Pride
and asked all my friends and family to help me pay for surgery.
And I thought that was painful.
Then they started giving,
and my heart didn't know if it was soaring or sinking.
The love of others is a magnificent burden;
heavy in a good way, like a thick blanket in the middle of winter.
Or,
like a wave pulling you under and flipping you over,
making you realize how tiny you really are.
Or,
like that moment on the roller coaster...
the one where you tip the edge and start going down really fast.

Thank you for turning me upside down,
inside out;
for wrapping your arms around me,
and making me realize how good it is to need you.

A video of me...fun.

So I'm moving forward with the endometriosis surgery and my sweet sister Bekah threw together a fundraiser page for me to help me pay for the surgery (it'll be about $23,000 and I do not have insurance!).  She had me put together a little vid talking about my experience with endo.  So...here I am, at 2:00am, talking about endo. Enjoy:

I want to go to Romania.

My 5-year-old niece gets frozen yogurt as a special treat when she's been exceptionally well-behaved or has helped out around the house or whatever.

Her favorite is Yogurt Mania.

She always slips and calls it Romania.

"Can we go to Romania now?"

Yes.  Yes we can.