Is chronic illness good?

This post was inspired by a recent, awesome, thread on ChronicBabe.com, which you can find here. It got tons of comments, and comments on comments, so I highly suggest that you go check it out!

The instigating question: is there any way chronic illness can be viewed as a good thing?

My two cents:

1. Chronic illness = Bad. 

2. Response to it = your choice.

Over my years of sickdom, I started out thinking "Chronic illness is evil." Then when I saw all of the positive changes in my life I made due to illness, I thought "Gee, I guess chronic illness is a blessing in disguise."

I ended up in this most recent paradigm when I realized that there is a difference between chronic illness and the response to it. 

All of the infinite "blessings of chronic illness” came from me: my decisions, my actions, my changes. The illness itself has never-ever-ever produced the tiniest bit of goodness.

When I used to say "Chronic illness has destroyed my life," I disempowered myself. By remaining in resistance, I left myself a victim with no hope.

When I used to say "Chronic illness has made my life better," I again disempowered myself. By attributing the positive change to the wrong source, I glorified suffering (bad idea!) and failed to recognize my own strength, power, and love.

Now I say ”I have responded to chronic illness in a way that has brought me many, many blessings,” and so I empower myself. Not only do I recognize all the work that it has taken to get this far, I recognize that no matter what life throws at me I can again respond in a way that benefits me. 

Is my life better due to chronic illness? Hell no. 

Is my life better due to my response to chronic illness? Hell yes. 

The famous saying does not go

“When life hands you lemons, be grateful, because they will magically become lemonade.” 

Nope, that lemonade ain’t gonna make itself. And so we say:

“When life hands you lemons, MAKE lemonade.”

Whether you choose to or not - is entirely up to you.

Ch-ch-ch-ch-ch-changes!

I've been doing a lot of background work on this website lately, figuring out how to grow it, brainstorming, making plans, figuring out what needs to get done and in what order. During that process I realized that there was one thing I really wanted and needed to change. A small, subtle detail that would have large repercussions about how I proceed.

Today I made that one small change, and you probably didn't even notice it. The subtitle of this website is now "Support & Sisterhood for Women with V Pain" instead of "Support & Sisterhood for Women with Pelvic Pain."

Why the change?

A number of reasons, the main one being that the female pelvis has so much going on that I couldn't adequately cover all of the pain disorders contained therein.

Unfortunately, none of these issues are given the attention they need: endometriosis, fibroids, interstitial cystitis - the list goes on. 

But those illnesses are not part of my personal experience, and I came to realize that despite my good intentions I wasn't doing them justice.

And frankly, as overlooked as those issues are, they get way more attention than vulvar and vaginal pain disorders. "Fibroids" is something women have heard of; "vulvodynia," "vestibulodynia," "lichen sclerosus," "clitorodynia,"...no one's heard of those.

Vulvar and vaginal pain are so under-researched that "clitorodynia" isn't even the name of a specific disease. It literally means "pain in the clitoris" and there are at least 11 different causes.

The crazy thing about all this is that studies show that chronic vulvar pain affects somewhere between 6% and 28% percent of the female population at some point in their lives. That's more than breast cancer (12%), diabetes (9.3% of Americans, not just females,) or heart disease (43 million women, about 7% of American women.)

V pain is not some little thing that affects .000001% of the population. Even the widely varying data we have on its prevalence indicates that V pain is a mainstream health issue - and yet it is completely ignored by mainstream medicine and mainstream media.

Out of solidarity with our pelvic pain sisters, and in recognition that many of us are in the multiple-diagnosis camp, I will continue to have a variety of pelvic pain resources on the Resources page.

But the intention of this site has shifted, and I believe for the better.

Holy Shazaam! Awesome New Meet Up Groups!

Remember how I started a Yoga for Healing Pelvic Pain group on Meet Up?

Curious, I did a search to see if there are other Meet Up groups addressing women’s chronic pelvic pain. Yes! There are nine groups…all started in the last ten months.

Crazy, right? 

One of the organizers I already know (I met her at the IPPS Meeting In October) and one of them I just met as it turns out we live in the same area!

This is so cool!

I would love to make something out of this momentum. For you, I created a new section on the Resources page, “Support & Meet Up Groups,” and added all of them. I also contacted each group letting them know what I was up to and asking how we could support one another.

Frankly, given the paucity of resources available for women with CPP, the fact that our groups exist is in itself revolutionary.

If you live close by to any of these Meet Ups, check 'em out! And if you don't, start one.

TIP: Nervous about people eavesdropping on your vah-jay-jay conversation at the local Starbucks? I recommend the "walk and talk." Find a pretty public park or walking path, and chat as you go along. If anyone comes too near while you are discussing something particularly private, you can subtly pause before resuming your conversation when they are out of earshot. I have done this before - much better than whispering while elbow to elbow with the dudes sipping cappuccino at the next table.

Lastly, do YOU have any ideas on how these groups can support or network with each other? I’d love to hear ‘em.

Free “Wake Up Your Libido" Tele-seminar for Women Experiencing Painful Sex - Tonight!

Sarah Kennedy, a pelvic pain life coach, is having a free, 3 session tele-seminar on sex and pelvic pain. The second one, "How to Wake Up Your Libido and Have More Energy" is tonight at 6pm PST! Can't make it? Sign up anyway and she will email you a recording. You can sign up here.

Whether you call in or listen to the recording, it will be super awesome to have further proof that you are not alone, amiright? Yay for community!

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Husband icing his ankle after turning it when stepping off a sidewalk:

God, this sucks. I have so much more sympathy for you now. It must be really horrible to ice your va-ja-jay.

Thank you dear for realizing that after ten years.