What Endometriosis Pain Taught Me About Grief
Grieve the loss and move on.
The advice (or, permission?) to grieve comes frequently, and often, and from a variety of sources. From the first time I heard the words, not long after I got sick but before I knew why, I understood, in theory, the words were true. That I couldn’t spend my whole life being bitter about what had happened to me. But I understood a lot of things in theory. That didn’t mean I could effectively put them into practice. Even on a good day—let alone when my intellect was moored by pain and a cacophony of other bodily rebellions.
Survival meant spending my best-feeling hours presenting evidence of illness and proving my pain—defending my life. But the more confident I was of the pain’s truth, the more proof I gathered of its existence, the more agitated doctors became. The more determined they became to assert my preoccupation with truth was a sign of my incipient hysteria. Or that I was trying so hard I must be lying. They thought I wanted to be believed. What I wanted, desperately, was to be relieved.
Grieve the loss, people say. Grieve it and move on.
Sometimes loss is unforeseen and has an almost alchemical quality to it. There are other losses that come on gradually. Your grief is concurrent to the loss. Later, when you reflect on that period in your life, all the days will bleed into one another. You’re never quite sure of the moment when the loss began. There are others for which you will have no doubt. With an acuteness characteristic of an emergency, it will grab you with such strength that you’ll be forced to reckon with your human frailty.
You will realize that up until now in your life you have put far too much faith in the presence of your spine. You have been living as though your bones are not hollow. As though there’s something thicker protecting them from the harms of the outside world; not just an inch or two of fallible viscera.
When you reflect on these moments, there is nothing hazy about them. They are more than lines drawn between past and present, they are cuts to remove something. Deep incisions that leave scars that never leave you. You learn to cover them up, to hide them from others, but you can always feel them. As could anyone else if you’d let them get close enough to touch all the places you’ve bled.
They are the portal through which you left your life before and entered After. I kept trying to reopen the gashes so I could go back. Back to health and happiness. To intellectual pursuits and tailored suits and my strong suits. Back to the ability to digest animal protein, to grand jeté, to masturbate with two fingers.
It’s always been my nature to pick at things. As a little girl, I frequently interrupted my body’s attempts to heal, pulling off scabs with sterile, surgical precision I’d reopen a healing wound in hopes I could learn from it how to heal.
Even as I was trying to fit myself into the epithelial portal to time travel back to the moment when it all went to hell, I was aware I was still losing things. Each year that passed from the first, something else would be tossed onto my loss pile. Like undone laundry, it became something I had to try not to trip over. Something I’d shove under the bed to hide from guests. That, if it stayed there long enough, would enter into a Schrodinger-like state of being and not being. Present, but unnoticed. Part of the landscape.
I tried to make an organized list of my losses. I organized them chronologically at first, thinking it made the most sense to tackle them in order. But as time went by, I shuffled them around in order to deal with whichever one hurt the most. I carried them one at a time, held them in my hand and brought them up to the light; little prisms of grief casting bitter hues. I had hoped these inspections would give me the same peace of mind my childhood dissections had, but I only found them exhausting. I never felt any relief upon casting off a loss because the pile just kept accumulating.
That was the epiphany I ultimately had: if I set out to “grieve my losses” I would always be grieving because there will always be something to lose. I have still not caught up to all of the things I’ve lost over the last few years: partners, friends, foods, jobs, hobbies, bodily functions. Then the more esoteric losses: identity, sexuality, self-confidence, self-acceptance, the ability to experience pleasure, the willingness to entertain hope.
Perhaps more than anything else, I’ve simply lost time: either to being ill or the seemingly perpetual task of trying to prove, and later, to come to terms with the fact that I am. I realized not long ago that I had become locked in a cycle of loss and grief that had begun to define my life.
We’re taught to enter our period of grief in order to “process” it — which, I think, really just means feeling, but in a way that is very regimented and orderly so other people can excuse it or explain it away. Not to make you feel better, but so they feel less uncomfortable.
Eventually, you’re supposed to reach “acceptance,” at which point it’s assumed that you’re able to live your life “normally” again. That’s a lofty goal for anyone who feels irreparably changed, but it’s particularly laughable in the context of chronic illness. Which is, by definition, ongoing but is not necessarily constant.
“I’m grieving as fast as I can!” I joke to myself, face-down in a pillow, exhausted by the absurdity of realizing I can’t even remember which loss I was supposed to be trying to learn to accept that day. I have so little energy to expend, mentally or physically. It suddenly seems almost irresponsible to be pissing it away on something futile and unceasing that has failed to bring me any relief.
I’ve started to wonder if it’s possible to be unhappy and still live a good life. I’ve started to suspect there’s a certain kind of freedom in admitting the losses in your life do not always necessarily create a space for “something better.” Sometimes, I think people say that because the gaping holes in your life make them uneasy; some kind of primal fear of falling in overtakes them and suddenly they’re trying to convince you that the only way to heal is to fill them up.
When I have the ability to take a moment away from the other demands of semi-functioning adult life, instead of reaching for grief, I’d like to reach for something a little lighter. At times it feels selfish or irresponsible to take delight in something, and if I do so around others they construe it to mean I am Better. They are very confused when only moments later I am flushed and cranky and sore. Either I am truly sick and only faking my contentment, or I must not really be all that sick. Because you can’t be both. I try to explain that it’s not that you can’t be both, only that it’s exhausting to sustain. Those moments are fleeting and hard-won, but the pleasure is no less real just because it’s brief.
Illness carved out many empty spaces in my life, and it continues to do so. These holes seem like pits of despair to someone looking into them, but I know now it’s been other people’s fears that have defined my perception. That my acquiescing to the pursuit of grief was never about making myself feel better, it was about reducing the discomfort of others. Grief was just the name we agreed to give my attempts to quickly bandage up fresh wounds that would have benefitted from a little fresh air, and to cover up unsightly scars that reminded people of their own weeping, hidden, ones.
I marvel at how easy it was for me to forget that I have never been afraid of such bodily abysses. That as a child, I willingly explored them, and that I was calmed by doing so.
Every time I lose something, that’s one less thing to carry. For years I suffocated under the weight of filling those spaces; of trying to be whole. Slowly, I am letting go. My hands are free and it’s getting easier to breathe.
Author Bio Abby Norman is an editor and author of ASK ME ABOUT MY UTERUS: A Quest to Make Doctors Believe in Women’s Pain. Her work has been praised by the New York Times Book Review, The Wall Street Journal, New York Magazine, The Washington Post, Pacific Standard, The Sunday Times, the Times Literary Supplement, Toronto Star, BBC Radio, NPR/WNYC, and other international media. As an advocate, she's worked with the Endometriosis Foundation of America, Stanford Medicine X at Stanford University, the National Partnership for Women and Families, the Society for Women's Health Research, Centers for Medicare and Medicaid, Yale University, and the American Congress of Obstetricians and Gynecologists. She lives in Maine with her dog, Whimsy.