by Torie Jean
Editor’s Note:The Endometriosis Foundation of Houston has invited guest bloggers to share their work, expert opinions, and thoughts with our endo community. Houston author Torie Jean contemplates the conflicting realities of living life with endometriosis.
CW/TW: This post is written by an individual who is currently pregnant and references the experience as well as medical trauma and gaslighting.
I had an ultrasound this morning. It was the good kind, where I saw my wiggly butt of a little man on a television screen for an hour.
The kind where a probe of gargantuan proportions wasn’t shoved up my hoo-ha.
The kind I never imagined I’d be able to have.
The kind I almost didn’t have today because five minutes before I was called in, I almost blacked out in the waiting room.
I didn’t register what was happening until the black dots spotted my vision. My husband asked if I was okay; all I could manage was “panic attack.”
Damn it, I thought, my endo’s at it again, taking something that’s supposed to be a joyous experience and filling it with trauma and dread. Is this really tainted, too?
And then, when the spots weren’t dotting, and my mind stopped racing—I came to a different realization. This time, the endo wasn’t to blame.
Believe me, I LOVE to blame endo for just about anything.
Shoulder pain? Dammit, endo.
Cramps—well, that’s an easy one.
Accidentally eating an entire bag of Dove’s Milk Chocolate? Endo hormones made me do it.
Biting off my husband’s head? Well, that’s not me. I’m a freaking angel.
But here I am, sitting and typing up a self-indulgent blog post—that’s part therapy, part sharing, and I can’t blame the endo.
Because gaslighting and medical trauma aren’t a symptom of the disease, it’s a lived experience associated with having it. And THAT distinction has taken me this long to get to—but that’s absolute shit.
It's frustrating to watch countless videos of people crying after their laparoscopy surgery because they finally got validation. And I hate that so many people with endo have the same long journey to diagnosis, their paths littered with medical professionals who added to their baggage instead of lightening the load.
The people who swore in their Hippocratic oath to “do no harm.”
They’re the ones responsible for my panic attack in the waiting room of a doctor’s office.
There may have been an aside to that oath that I missed. Maybe it says, “do no harm, but if they have endometriosis, they’re fair game.” I don’t know, but I know something should and has to change.
Yes, I would love a cure. Yes, I would love an easier path to diagnosis. But those things may be years down the road. How medical professionals approach our diagnosis and care can change right now. By educating themselves, they can increase their knowledge about the disease. More empathy can be shown in our appointments. They can stop saying the words, “you’re constipated, that’s all,” “It’s depression,” “You just have a low pain tolerance,” or “It’s just painful periods,” and heck, our experience would suck seventy-five percent less.
Medical trauma should be a rarity amongst our population, not a common bonding factor.
As much as I love bonding with all of you, I’d love it if you couldn’t empathize with me here. I hate that you’re probably reading this and have had all those things said to you and then some. I hate that you’re shouldering more than just the disease when the disease itself can be soul-crushing.
And I hate I can’t do much more than write this blog post.
But medical professionals (indulge me, I’m going to pretend someone with a medical degree is reading this), I know sometimes it’s hard, endometriosis is a complex disease, and information is lacking considering how common it is. I imagine this might be overwhelming sometimes. I can imagine how challenging it is to feel helpless when someone is in pain. But I promise you, there is a way to help us; listen. Please don’t add to our burden. Don’t make waiting rooms and doctor visits a place of terror and past traumas. Tell us our feelings are valid rather than asking us to suppress them. Reiterate that we’re strong instead of weak.
How you approach us matters.
And one final thing to all the people reading this and identifying far too much with the writing, I love you. It’s not in your head. You are strong. Your pain is valid. You are enough.
And you’ve so totally got this.
Bio
Torie Jean's favorite memory growing up is the way her Memere's fingers flew over the keys of her two-tier electric organ, playing songs like "Singin' in the Rain", "I've Got Rhythm", and "What a Wonderful World". Her undying love and affection for the magic and charm of Gene Kelly and Audrey Hepburn followed her from childhood, to a seventh grade book report on a Gene Kelly biography, to studying abroad in Paris and finding "the den of thinking men."
Torie is married to her high school sweetheart and is blessed with the best gaggle of nieces and nephews she could ask for. She has had endometriosis for over half of her life now, and hopes to raise more awareness of the disease with her writing, while providing the happily ever afters people with endo deserve.
Photo courtesy of Torie Jean