Pelvic pain is an invisible illness.

A life with chronic pain means excruciating discomfort, fatigue, shattered dreams, broken friendships, lost careers…lost years, really.  I spent my twenties in pain, and during the years that my friends were partying, dating, drinking, job-hopping, and generally having fun, I was in pain.  Specifically, I was in agonizing pelvic pain. Each day, I felt salt-in-a-wound burning on my vulva, deep aching vaginal pain, and knifelike stabbing clitoral pain.  My thighs and low back and abdomen were warm to the touch from inflammation and constantly cramping.

Pelvic pain has some nuanced challenges: no one (including my doctors) could see the area that hurt without me fully disrobing, the words and vocabulary of clitoral/vulvar/labia/vaginal pain made me squirm, people made assumptions about the causes of my pelvic pain (all of which were wrong), and most doctors know little about it.  Then there’s all the “regular” challenges: nerve pain is invisible, the medications wrecked havoc on my sanity and system (thus compounding my invisible suffering), the insurance companies were loathe to cover anything, and people doubted the severity of my pain or said insensitive things or excluded me from plans after I’d declined the five previous invitations.

The single worst thing that people said to me when I was sick?
“But you don’t look sick.”

In the midst of my worse pain years, I drove to the grocery store for a handful of items, proud of myself for undertaking the outing.  With my disabled parking placard hanging in the rearview mirror, I pulled into the closest parking spot.  In the neighboring spot, a couple were getting into their car, so I left a generous amount of room on that side of the car.  I opened the driver door and was confronted with a wave of judgment and anger.  The man yelled at me: “can’t you see we are still getting into our car? You’re not even disabled! You shouldn’t even be parking there!” I flushed with embarrassment and became shaky.  And for the first time in my life, I yelled at someone in public. “You have no idea what you’re talking about. You know nothing about me!”

For awhile, I flew weekly from Albuquerque to Denver for medical appointments, and I often stayed overnight for two days of treatments.  I always asked the airline check-in counter for permission to “pre-board” my flight.  I never just got it upon asking.  “What’s the reason you need to preboard?” “Do you have a disability?” “That’s only for medical necessity. Does that apply to you?”  Or, sometimes: “What’s your disability?”  I needed extra time to walk down the jetway, a little help placing my bag overhead, and to sit as close to the front of the plane as possible so that I could minimize the distance I needed to walk and could easily access the restroom.  A few times, I became frustrated and would pull out my disabled parking placard: “is this the proof you need?!”  They’d reply that I don’t need to show them that, and that they don’t need “proof.”

Once, sharing this story with my family over dinner, my mother-in-law suggested that I start using a cane so people would know that I was sick.  “You don’t look sick.”  She thought that if I used a cane on these trips to Denver, then people would believe that I was sick.  I held it together and retreated to my room in tears.  The comment felt so invalidating, and others’ perceptions of my illness had made me so raw.  Why should I have to continuously prove to others that I’m sick, rather than expecting them to show me empathy and patience?

It was a continuous struggle, and the smallest things could ignite someone’s anger or indignance.  Taking a seat on a crowded bus invited a snarky comment.  Asking to move to the front of a mall restroom line because I was taking medications that screw with my bladder invited eye-rolls from the women I passed.  Dodging to the airplane restroom when the seatbelt sign is turned on was met with indignant flight attendants’ commands that I turn back.  Declining to help an elderly person carry groceries upstairs always made me feel guilty, but I wasn’t physically capable of helping.  Using the mechanized chair-carts at Target, I always felt stupid – as if I was about to be accused of “horsing around,” even though I couldn’t have visited the store without one.

People also thought that the visible signs of my illness were invitations to comment.

The day before my wedding, I wheeled myself around the crammed Dillard’s lingerie department, shopping for something as simple as a strapless bra.  The saleswoman was following closely behind, picking up the items my chair had knocked to the ground, but also chattering incessantly about what a shame it was to see such a young woman in a chair.  As if that hadn’t occurred to me.

For a time, I also used an emotional support animal – my dog, who traveled with me and brought me immense comfort during medical trips.  As I lay in my hotel bed at night, tears soaking through the pillow as I writhed in pain, my dog offered sweet, warm reassurance.  Yet, at the airport and coffeeshop and hotel, everyone felt it was acceptable to ask about him. What does he do for you? Why do you need him?  He wore a red vest indicating his role, yet people still approached me: “What did it cost to bring him on the flight? I have a (insert fancy breed here) at home and would love to bring her next time!” or “I didn’t know this hotel allows pets!” Even still, some places like Starbucks have been particularly hostile, asking details about his role in supporting me or flatly stating that he’s not allowed in the store.  Mind you, I was always very conscious of the fact that I was in a food establishment and never lingered with him – even just ordering and leaving the premises, I was frequently scolded for violating their rule against pets.

The inquiries are endless.  A fellow traveler would ask why I needed to preboard the flight.  The student services person at my law school asked details of my illness and then declined any accommodation.  Family members got offended when I didn’t spend a sufficient amount of time at gatherings, especially when in their view, I looked “healthy” or “chipper” or “bright” or “restored” on that day.  My skin tone, weight, clothing choices, spending choices, pet care choices, very personal choices, all became things that family and acquaintances and strangers alike felt comfortable commenting on.  I was disabled, and my life had become fodder for their gossip and chatter and eye-rolls.

And more often than not, after my body and appearance had been scrutinized to a sufficient degree, they would say to me: “but you don’t even look sick.”

Tags: pelvic pain, pelvic health, intimate health, sex pain, invisible illness, chronic pain, chronic illness, persistent pain, fibro, crps, fibromyalgia, pcos, fibroids, disabled, disability, young illness, pain, chronic, empathy, patient

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