Healing from shame

At the age of 33, I have never had sex without being in pain. Through a very long and drawn out course of well over a decade of seeking answers and a cure, I have been diagnosed with vulvar vestibulodynia (a subset of vulvodynia, also known as vestibulitis) and vulvar dermatitis. The latter is linked closely to my overall tendency towards dry skin and eczema although on examination, I look healthy.

Naturally this has greatly affected my relationships and led to me generally staying single so as not to be in pain. I was so embarrassed at the thought of telling a boyfriend or anyone for that matter, that I largely suffered in silence, ashamed of this mystery illness that I appeared to have developed for no obvious reason. Doctors were telling me there's nothing wrong with me and that it's "just psychological" yet my body was screaming out in pain. For a really long time, I couldn't talk about it without crying and I spent so much energy on hiding it from anyone and everyone, even those closest to me. My absolute worst nightmare was someone finding out. I have spent many years trying different healing modalities from west to east which, while teaching me a lot along the way, have, for the most part, not made a difference to my vulva pain.

It was mid-2014 when I decided that if I can't cure the physical pain, I can at least work towards losing the shame I feel surrounding it all. Which had arguably been the worst part for me. If I had the same pain but in my arm say, my life so far would have been a lot easier!

So I have embarked on a journey. I spent 3 months with a psychotherapist. At that point I was working 12-15 hour days in a very stressful job which I was not sad to leave on having saved up just enough money to take two months out to travel and essentially, rejuvenate. This gave me a lot of time to think and in November 2014, I wound up in Bali where I stumbled across Sacred Wellness Institute, the most amazing, life changing retreat week of healing that I joined alongside four other women facing other life challenges. No one else there had vulva pain but I was given the space and understanding to share which I found so hard but knew it was what I was there for. I finally told my family who were very supportive. I was nurtured and told by various practitioners there that I was holding a lot of pent up tension in my lower chakras.

Bali was a mind blowing experience and I was floating on air for months! Since then I have got a new job with more respectable hours, spent a lot of time watching TED talks and documentaries, reading books and articles, all on vulnerability and wellness in general. 

Don't get me wrong, I still have a lot to work on but I now don't get upset when I talk about my vulva pain. Rather, I can just be quite matter of fact. I have a wider support group of people closest to me that I can talk to. These parts of our bodies embody the power of recreation. They are the essence of our femininity which is a beautiful thing. None of us have anything to be ashamed of. 

What I really realise now from all my deep delving is that the shame I've felt around that area of my body and my sexuality has actually been a big cause of all my pain. A huge breakthrough! Every time I used to wince at the thought of my pain or thinking about trying to have a relationship right from early teen years, I was unknowingly tensing even tighter. I am now seeing a brilliant physiotherapist who is working internally to release this tension and retrain the muscles. It is very slowly working. Meanwhile, I now realise that as a stubborn and chronic condition, I cannot only try to heal with external things. It must come from within.

In the words of Dr Lissa Rankin:

"When we focus only on strictly physical and biochemical diagnoses and treatments, we miss a potent opportunity to allow illness to serve as a vehicle for personal growth and spiritual awakening".

I am now feeling more positive than ever that I am on the road to recovery. And I feel stronger and better than ever within myself. If you are in the same boat as me, what uncomfortable emotions do you have that could be stopping you from feeling as well as you deserve to feel? It's not easy but maybe this could be your answer.

Imagine a Culture of Healing

About healing v pain and chronic illness in general: shouldn't the process of getting better, in and of itself, actually make you feel better?

This is not a new thought for me, as many times over the years I have noticed how "getting better," at least in modern America, can often feel anything but.  Some days "health" seems like an elusive prize, available only on the other side of a daunting journey through a harrowing gauntlet. 

Dealing with doctors, wrangling with insurance or suffering the lack thereof, dead ends, failed treatments, and the never-ending list of implementing, tweaking, and maintaining lifestyle changes (better sleep! healthier food! learn how to meditate!) feel like a second job.

Do other cultures make their sick people go through all this? Is this common? I don't know. Logically it seems like if someone was unwell, you would try to make things easier for them, right? 

But here we don't. Here we send them to the gauntlet. To be fair, some of this crazy gauntlet-running can pay off.

Eating healthfully takes effort: planning, shopping, cooking - but most people do feel better eating fruits and veggies than a steady diet of chips and soda. Maybe the effort you spent seeing six unhelpful doctors in a row was completely draining, but doctor number seven has some solid advice. So yes, gauntlet-running is not completely without benefit.

But overall, gauntlet-running is an inefficient slog, especially for those of us whose health issues are not well understood or researched. In our already weakened state, we pour effort into getting better and still -- perhaps -- frustratingly -- see very limited results. 

Is it any wonder? We're put through the wringer, and weren't in great shape to begin with. I bet if you took a perfectly healthy person and gave them the to-do list of the average chronically-ill person, they too would end up exhausted and miserable.

Does that mean we are somehow "broken," or "less than?" In the past I have felt so much frustration with my health and aimed it all at myself. Other times at the medical system. But look at where I live -

Modern America, for all of our wealth and resources, is the antithesis of a healing culture.

What I do here as an "ill" person wishing to recover is swim upstream, all day, every day.

* * * 

What if we lived in a society where getting better felt better? What would that look like? What would our lives be like if our culture recognized, "Hey that person is having a tough time, how can we accommodate them?"

Let's pretend...

You are feeling really crummy. This has been going on for a while. So you let your boss know - he or she arranges for a reduced schedule to allow you time to get the help you need, and make the lifestyle changes necessary. You will still get to do rewarding and meaningful work, and be eligible for promotions and pay raises, etc, the only difference is the time required reflects what are you able to give. 

You have guaranteed access to whatever health resources you needed, regardless of income, including a "medical navigator." The medical navigator answer your questions about what approaches are available and how they may help, and directs you to resources. 

Health care practitioners of all stripes are warm and caring, see you as a whole person, and have the time needed to address your queries.

At home, your family/roommates/cats respect this new phase of your life, and together you work out a way for you to contribute to the running of the household in a manner that doesn't compromise your health. 

The community organizations you belong to are similarly flexible, and your friends "get it." 

In short, everyone in your life recognizes the need for change and knows how to go with the flow. As your role in their life changes, they in turn may need to adjust or ask for support as well, and so loving changes and adjustments are made, rippling out from the center. 

When you first started to get sick, you did not panic, because you knew this support existed. You knew because you had already participated in it, having supported others in this ebb and flow ever since you were a little girl.

* * *

Don't you think it would be so much easier and more efficient to get well in that scenario? Don't you think that everyone in that example is better off than with the current state of affairs?

In the medically-wise culture described above, everyone makes adjustments, but everyone also gets supported. The attitude is not "that sick person has to change," but "the entire community around this sick person needs to change, and we can do so in such a way that supports all of us."

Healing in all it's many forms is viewed as an opportunity rather than a problem: at work, at home, everyone looks at the issue and says "Hmmm, how can we make this new reality work for everyone?"

The intern gets a chance to step up. Your co-worker gets to take the lead on some projects. Your friend helps out with cooking happily, because she gets to fine-tune some new recipes she has been testing. Your empty-nester neighbor who misses her grandkids helps out with your children for a few hours a week, and your kids get to hang out with someone new.

In return, you get back on your feet faster.

Instead of becoming a frazzled, drained, sick person (which helps no one), this support enables you to shine your love and talents and goodness onto the world throughout your illness, however long that may last.

And when someone else needs some give and take? You will be in a state to participate in that dance. Even if you are still physically struggling, you will be so firmly rooted in your inherent worth that it would be impossible for you to not have plenty of love to share.

Amidst all this love and creative problem-solving, society flourishes.

* * *

I don't really know where I am going with all of this, other than to highlight challenges and dream up potential solutions...sometimes we don't realize how broken something is until we see an appealing alternative. 

I'm curious - what would your "healing culture" look like?

In the US, our love of independence puts a premium on what we as individuals can change, and as a fan of taking responsibility for yourself, I see the benefit to that. But humans are social animals, and it behooves us to recognize that no harm or good comes in a vacuum; we are all in relationship to each other every minute of every day, and our communities have a profound effect on our health.

So.

Take the focus off "fixing yourself" for a minute, and instead imagine you could change the world around you. Journal it, draw it, sing it, whatever. Make every detail come to life.

What does it look like? What does it feel like?

(and how did creating that reality, even if only in your imagination, change your relationship to yourself and your v pain and your life?)

* * *

I would love to hear your responses. Comment below, email me, whatever. If you wish to share your experience with this query, let me know and you can have a guest post! (You are welcome to remain anonymous or use a nom de plume if you wish.)

PS I am changing my writing schedule - it's now one post a week, on Wednesdays. This is to allow time for all the B-School work I have going on, and to allow time for my own health journey. Cheerio and take care of your wonderful selves!

PPS I spotted this miraculous little flower on the sidewalk in my neighborhood. Anyone know what it is?

April Reflection

I haven't written in what feels like ages, and to tell you the truth, I don't know what to write about. A lot happened in March, twining together my personal, professional, and medical lives, and I am feeling a bit shellshocked. Too much information to digest at once. My brain wants to shut down.

I have been thinking a lot about what it means to heal: "to become sound or whole," or rather, to live through my wholeness. My wholeness is already there, but I have been living alongside it, not in it or through it.

I have been making health decisions based on the belief that something is broken and to get well I need to "fix" it. I am coming to see that I am not broken, and instead in my case healing is the process of aligning oneself with a greater reality.

I recently heard a student of Ayurveda say "Live with Mother Nature, or she will come and live with you." She meant that when we get off track, Mother Nature lets us know by showing up in the form of illness, disease, chaos, imbalance. We do not have the power to do as we wish without consequence. There are greater powers out there, and it behooves us to work with them rather than against them.

Happy April everyone, and I hope the spring is treating you well! (The photo above is from my garden - we had a visitor hiding in the lavender yesterday...)

Does Diet Heal V Pain?

I got this post in my inbox today and it got me thinking...

Does what we eat affect v pain?

There are so many anecdotal stories out there, many like this one backed up by very convincing scientific explanations. (In case you didn't read the above post - she stopped eating dairy and her menstrual cramps stopped.)

Step into the world of research and opinions on health and diet, however, and you are blasted with a million different and often conflicting prescriptions, all of which guarantee you amazing results if only you  _________.

Early on in my journey, I was told that the "low-oxalate" diet would help improve my vulvar pain. The theory was that something called "oxalates" was irritating my skin via urine, so I should stop eating those foods (which included spinach, red wine, chocolate and much more.) 

So I tried it. It didn't do a damn thing.

I wasn't surprised. My pain seemed to be coming from a deeper place, to be different than skin irritation, and I was skeptical that this crazy pain came from peeing. Rinsing with water after urinating didn't help, so why would a low-oxalate diet?

As far as I know the whole low-oxalate diet for V pain has been discredited, but over the past few years public awareness about the relationship between food and health problems has skyrocketed. This has generally taken place in the form of "this specific food causes this specific symptom," rather than "eat a healthy balanced diet." So we have an avalanche of dairy-free, soy-free, gluten-free products filling our grocery shelves and making their way onto restaurant menus.

Back in the day doctors thought my grandfather was dying from stomach cancer. He was wasting away. Turns out he had celiac disease, a condition in which proteins found in grains (gluten) destroy the lining of the intestine, making it impossible for the body to absorb nutrients. Once he eliminated gluten he recovered completely and went on the live another 25 years.

In this regard, I am grateful for the new awareness about food-related chronic disease, and hope the gluten-free craze helps people with celiac get a proper diagnosis.

But amidst this "elimination diet" frenzy there is so much conflicting information. Vegans, vegetarians, followers of the paleo diet, Weston-Price, Dr Andrew Weill's food pyramid, raw food, juicing - all of them proclaim that by simply adding or eliminating X, Y, and Z we will be amazed at the incredible health benefits.

For some people, it works.

But as someone who has gone down just about every dietary pathway, I have also found this hype to be discouraging.

Before I developed v pain, I already had a number of health struggles, and in a search to feel better I eliminated three things: dairy (it gave me headaches,) soy (it gave me diarrhea,) and gluten (felt better overall.) This was 13 years ago, so people thought I was nuts. I was 19 years old, wasn't I supposed to be living off beer and pizza?

I had been a dedicated vegetarian in middle school and high school, but since I had eliminated dairy, soy, and most grains, I started eating meat again to add some variety to my diet. 

With the current elimination diet mania, I feel vindicated for my choices, but also bummed that while I did have some success with dietary modifications, it sure as hell didn't turn me into a picture of health. Post-elimination, I went on to develop all kinds of nasty things, including v pain.

A couple of years ago I decided to revisit the land of elimination diets. I had been resistant, as I knew that food restrictions could be annoying and not completely successful, but I figured that I owed it to myself to give it another try. In sequence, I took out one thing for a few weeks at a time, but I didn't see results. I figured perhaps I needed to chuck more than one item, so what the hell I might as well keep going and eliminate everything at once.

For three months I ate nothing but unprocessed organic pasture-raised meat, some fish, and non-nightshade organic vegetables - the only things that we (mostly) don't blame for health problems. (Regarding my choice of including meat: I had already been a vegetarian, they are not viewed as allergens, I ate only the healthiest meat possible, and I needed to eat something other than non-nightshade vegetables.) 

Everything else: nuts, fruit (because of the sugar,) grains of any kind, beans, legumes, nightshade vegetables, anything processed, went out the window.

It didn't do a damn thing. (I did lose ten pounds, but that was not the goal.)

It took an immense amount of effort and discipline, and at the end I was burned out and deeply disappointed. It did nothing for v pain, didn't help my menstrual cramps - so frequently blamed on dairy - and it didn't even make a dent in my acne-prone skin, and everybody who's anybody blames acne on inappropriate diet.

Following this experiment, I figured if diet didn't change any of my symptoms for any of my health problems, I wasn't going to stress out about eating healthy. Exhausted from months of intense cooking, I gave myself permission to subsist on cereal and yogurt for awhile (the pain meds I was taking at the time eliminated the dairy headaches I used to get.)

I spent a long time subsisting on cereal and yogurt.

Only recently have I started to get back into my old, pre-the-mother-of-all-elimination-diets-diet habit of eating generally "healthy." Ya know, organic meat a few times a week, gluten-free grains, organic vegetables, organic fruit, some beans, organic dairy, pasture-raised eggs. I'll have the occasional chocolate or bag of chips. 

It still hasn't done anything to change any of my symptoms, but I like to think that it is worthwhile self-care, and in my opinion healthy food tastes good. (Except when I burn it or otherwise mess up - I am not the best cook.)

I wish diet was the panacea for all of my many heath issues. Wouldn't that be great? A solution completely within my control, no doctors or second opinions or prescriptions needed!

As it stands, I have not yet reached the promised land.

There are many benefits of elimination diets - its DIY, it can be precisely tailored to your needs, and the proof is in the pudding. There is strong motivation to continue behavioral change when you reliably feel a positive difference.

I'm glad people share their stories of success with any treatment, especially simple lifestyle changes, as such sharing can genuinely help others. 

But I am turned off by the endless theories put forth to convince you that this way is THE way, and the fanaticism and judgment that sometimes goes along with it. Human bodies are so complex, and given the fact that there are currently 7 billion people on this planet it is difficult to believe that one way of eating will "fix" everyone.

My two cents? Experiment, be open-minded, and listen to your inner compass. Theories are not the holy grail. Ultimately, your body's reaction to any treatment is the most important information out there.

As for the theories and fanatics?

Take them with a grain of salt. 

Habits, Fears, & Pants

I hit another milestone during the IPPS Annual Fall Meeting.

About a year ago, two friends asked me why I always wore yoga pants. I was taken off-guard. It was not the time or the place to go into a lengthy medical history and explain that I wore them for pain management (ah! didn't want to go into that,) so I blubbered something about the fact that I am a yoga teacher, and that for two of the past three years I worked as a massage therapist, and that in that world yoga pants count as professional attire (justification, justification, justification.) Never mind that yoga teachers and massage therapists don't wear yoga pants all the time...

The truth is I didn't know how to answer my friends. I had slid into my daily yoga pant habit over time, and never thought about it. Their comment brought my attention to this routine, and inspired me to do some unwanted reflection. (Apparently you can think deeply about yoga pants. Who knew.)

I realized a few things. First, I thought no one had ever noticed me from the waist down. I don't present myself as a slob - I wear make-up, love earrings and pretty shirts. But below my belly button? I'd rather not think about it. Surely no one notices that on the rare occasions I need to wear something nicer than yoga pants, I just dress up yoga pants. A dress over leggings. A cool tunic over leggings. I fooled them all! (right?) 

As Stuart Smally would say, "Denial ain't just a river in Egypt."

Second, years of living with chronic pelvic pain had made my relationship with pants fraught. They reminded me that I was "broken," that I hurt, and that I didn't know what to do about it. I either wore pants a couple of sizes too big - which was sloppy, and I hated it - or sweatpants, also sloppy. While I love a good summertime maxi dress, I have never been a fan of skirts as I don't find them to be flattering. So by wearing yoga pants and leggings I avoided the unwanted skirts and took a step up from ill-fitting slacks and frumpy sweats. Ta da!

I felt and still feel pretty in yoga pants. They make me feel athletic, strong and confident. While in the early years they would've hurt a lot, as my symptoms reduced they became the only pants I could wear with almost no pain...and then, no pain. Regular dress pants were still uncomfortable, and jeans I could wear if I limited the time to only a few hours, but wearing pain-free yoga pants allowed me to blissfully deny that I hadn't totally figured out this monster of a health problem.

The story continues. After years of symptom management being the best I could hope for, I finally found a doctor who not only correctly diagnosed me as being centrally sensitized (meaning that my central nervous system was the root of my pain, not my skin, muscles, bones, etc) but who also stepped up to the plate and became a true partner in healing my CS. 

My symptoms dropped dramatically, until...they were gone.

The yoga pants remained.

Trigger-avoidance was a coping mechanism that had deeply ingrained itself into me over nine long years. In the back of my mind I feared that if I stopped avoiding situations that had previously caused pain, then the pain might come back. That included wearing regular dress pants. What if I put them on and the pain returned and I wasn't as healed as I thought I was? That possibility was too terrifying to contemplate. 

A few weeks ago I was traveling with my in-laws, who love to outlet shop. Wandering the vast Floridian malls, I remembered my friends' question, and for the first time in almost a decade I bought three pairs of properly fitting dress pants. Holy God.

Last weekend was the IPPS Meeting. While packing, I scanned my closet. Wearing yoga pants to a professional medical conference was not the image I wished to project. 

But there were those pants. Three pairs, hanging, as yet unworn. Professional, flattering, with an unusual edge I so appreciate in my attire. I carefully folded them so they wouldn't wrinkle and added them to the suitcase.

Dear reader, I wore them. Three days in a row I wore them. Through hours of sitting I wore them, through eighteen hour days I wore them, through an airplane ride I wore them.

And you know what? They didn't hurt at all. I didn't even notice them.

And just like that, I became a "normal" person. A person who wears yoga pants to yoga, and regular pants the rest of the day. A person who doesn't have to stand in the back because it hurts to sit. A person who can focus on the task at hand because she isn't trying and failing to ignore her ouch-y crotch.

So, thank you to my dear friends Subechya and Andrew for asking me why I always wear yoga pants. And thank you IPPS Meeting for being unrelentingly professional, and thank you to my own sense of social propriety and fashion sense and bravery which all contributed to me wearing Those Pants, Those Pants, which from this day forward shall be known as

Those. Awesome. Pants.

Here they are, my glorious, awesome pants.