Tuesday, February 24, 2009

Will We Celebrate?

I've done a lot of thinking about yesterday, basically spending today in its shadow.  My pain is getting better and better on the colostrum, and now it's to the point where the fact that any pain remains relaxes me -- because if some pain remains then it can't come back.  If/when it ever goes away, I'll be bracing for the pain's return for at least a little while.

I want to tell someone, hey, my pain is fading!  It shifted over to this place now and it feels like this instead of this!  I have plenty of friends I could call up who would rejoice with me, but historically, the people I've felt closest to are my parents.

I've spent the 30 months I've had vulvodynia constantly struggling to feel cared for by my parents.  I've done everything I know to do to get them to understand what is lacking in our relationship, how they hurt me with their constant oversights, and what they can do to help me through it.  But none of it has made any difference.

Before I got vulvodynia, I thought my parents and I had a pretty good relationship.  But the stress of vulvodynia showed me exactly where the cracks lie between us.  The thing is, my parents don't even know the cracks are there.

Like when Alexandra Carmichael told me my story would be in the Vulvodynia Heroes book (which is out today) -- I e-mailed my parents right away.  It was so cool and such a positive thing to come out of my experience, both the book and my participation in it.

I sent that e-mail 12 days ago, and I haven't heard a word from either of them about it.  Not an e-mail, nothing.  How in the world can they not respond to that?!  It's representative of almost all of our exchanges regarding vulvodynia.  I might as well never have said anything.

They still, 30 months later, don't understand the kind of stress I've been under living with chronic pain even though they are the people who have gotten the most details about it out of all the people I know.  They still can't remember that I'm in pain all the time, that I might not want to do things like go skiing, that I might be deathly afraid of eating the wrong food.

And it makes me think -- if I had to have surgery for my pain, would they believe it was necessary?  Would they support me?  Would they take care of me?  Rationally I know they'd be there while it happened, but I honestly don't feel like they'd show up.

It makes me think -- if my pain goes away, will they celebrate with me?  Or will it be just another day for them?

I can't stand the thought of them saying a passing "hurrah" when my pain goes away.  That thought cuts me, probably because I know how likely it is.  So, for now, for a while, I'm just going to withdraw from my family.  Emotionally, I'm at my wit's end, and turning to them without receiving the support I need -- or, worse, like last night, feeling like I've been tossed in a gutter -- hurts a lot more than going it alone.

I don't care if this is dirty laundry.  Let it air.


  1. I like your blog -- I've been reading it for a few weeks.

    Anyway, I too am very close to my parents, but I never felt like I could be truly open with them about my pudendal neuralgia/vulvodynia. My mother is usually willing to listen, but my dad doesn't want to hear anything about it (I think my brother assumes that I've had a yeast infection for seven years).

    Sometimes I think it's just so completely out of the normal realm of experience, people just don't know what to say. Even the physical therapists I've been to say they avoid telling most people exactly what they do. I think it's depressing that few people can talk about this comfortably, especially when we're such a TMI society in general.

    Maybe you should ask them how it would be different if you had an "normal" problem like rheumatoid arthritis or lupus.

  2. I would celebrate with you anytime. If your pain doesn't go away, we could still celebrate your incredible spirit and resilience.

  3. Thanks both of you :)

    AK, I'm sorry you also have problems talking to your parents about it. I do wonder if it's JUST vulvodynia, because my parents and I seem to be able to communicate pretty well otherwise -- meaning, they are responsive. It's so weird, like the twilight zone. Am I suddenly speaking Arabic?!