For someone who struggles with so much pain on a daily basis, I’ve been lucky. Unlike so many people who suffer from invisible illnesses, I have the full understanding and support of my friends and family. No one ever makes me feel guilty for not joining them at an event, and no one has ever said insensitive things that belittle my experiences. Of course, there are still the weird looks I get from strangers on the rare occasions I feel good enough to go out, as if carrying a stack of pillows into a restaurant or having to stand in the back for part of a movie is some egregious act of social rebellion.
But as wonderful and supportive as my friends and family are, they don’t know the full extent of what I go through. For the most part, they see me only on the good days, and even then for just a few hours at a time. The most they see of my pain are the special pillows and chairs I use, the pills I take, the times I have to lie down or leave early. They don’t see what happens when I get home, how I scream bloody murder when my husband rubs arnica and epsom salt oil into all my locked-up muscles in an attempt to relieve the pain that is always, always the price of doing anything other than lying on the sofa. They don’t see me when the pain is so bad, so far beyond the help of traditional and holistic treatment, that I literally do not leave the sofa at all, not even for a glass of water. The weeks when even reading a book or watching TV hurt because the book is suddenly too heavy and the slight angle of my head to see the TV tugs at my neck and shoulder muscles in all the wrong ways.
My endometriosis is even more invisible. I never talk about it with anyone except in the most general terms, so the only person who sees the toll it takes is my husband. He’s the one who has to clean up the trail of blood in the hallway while I’m sobbing in the shower at 3 in the morning, watching the blood pour and pour out of my body endlessly. The weeks where I sleep only in brief snatches because every fifteen minutes, like clockwork, another clot sends me running to the bathroom praying that I get there before bleeding all over everything again–and most of the time, I don’t make it even though I’m wearing six pads and the bathroom is less than a dozen steps away.
And then there are the things that are truly invisible, the things that even my husband doesn’t see. Because of my pain, we don’t share a bed on a regular basis, so he’s not there to see how many nights I cry myself to sleep, the anguished prayers for healing and the fights with God about whether or not my life has any meaning. In 2012, when I spent most of the year struggling with suicidal thoughts, my husband only knew that I was more miserable than usual because my pain levels had increased dramatically. He was actually in the house at the time I came closest to killing myself, completely unaware that in the room above him, his wife was sobbing out every dark and desperate thing in her heart with a knife in her hands.
This is chronic illness: a constant battle with endless layers, and each time you peel back a layer, there are fewer and fewer people who have any visibility into what it truly means. My pain is almost completely invisible to a stranger–I’m only thirty-three, and other than being a bit overweight, I look like I’m in reasonable health. The pillows I cart around, the frequency with which I have to adjust my seat, how I sometimes need to stand or sit when it’s not appropriate… These things draw some attention, but they don’t reveal the anguish caused by simple, everyday activities. To my friends and family, it means I cancel plans, tire easily when I do show up, and almost always go home early. My husband sees more than anyone else: the days when the slightest movement makes me howl in agony; the ordinary tasks I cannot do for myself, like putting on socks and shoes; the hours I spend in the bathroom swearing that if I had a scalpel, I’d dig my damn ovaries and uterus out myself. But even he doesn’t see everything. A large part of this fight will always be invisible, because no one who has not lived through it can truly understand it. Even those with similar conditions have their own battles to fight, their own unique array of symptoms and internal struggles.
In such circumstances, it’s easy to believe that we are completely alone with our pain, but I have come to believe that the opposite is true. The day I almost committed suicide, the day when I was the most alone, what kept me alive was not the encouragement of a loved one or a counselor: it was an unexpected gift from the world. It was a snowy day in February, and yet there was a flock of a hundred robins in my backyard that morning. More robins than I had ever seen in my life, months before they should have returned from their winter migration, and every last one of them was singing as the snow came down. And that was what made me put the knife down: that God had brought the very birds which are a universal symbol of hope and rebirth to me at exactly the right time, and in such overwhelming numbers that I could not possibly have ignored them. I’ve seen this other times, too. Huge, vibrant double rainbows in the sky on the day I buried a beloved pet, the golden harvest moon cresting the horizon right in front of me on a drive home when the pain was so bad I could barely breathe. Small blessings shining out of even the darkest times, messages of hope to tell us we are never truly alone.
~With thanks to Debi, whose own writing helped me understand what was in my heart this week.