Published in SICK issue 3, 2021

Olivia Spring is the founder and editor of SICK magazine. She is currently writing a memoir exploring illness, disbelief, and guilt. Follow her at @olivialspring.

• • •

Six months into the pandemic, bruises begin to coat my legs more reliably again. When I inspect my skin and poke delicately at all the coloured shapes, I find a thin white line that wraps around my thigh like a piece of thread. It looks like a long scratch or a dramatic scar, but I know it is neither, and it takes two weeks for my anger to rise up and hit me in its usual spot. I’ve had too many days of oppressive joint pain and waking at 5 am just to bask in the sharpness of it, so the anger comes urgently. It is telling me something that I have been told before, and that I will be told again.

Though the anger is familiar, it’s still surprising — I’m used to illness and the way it owns me so silently; tucked into the depths of my body and never showing any signs of failure. But how can it not be enraging, when illness keeps finding new ways to embed itself into me? How can I ever truly embrace a body that is so unforgiving? It has been 12 years. Of course I am angry.

For the first time in the history of my illness, I have something I can point to on my body that can speak for itself. I don’t have to try to convince anyone of its existence with my elaborate words, I can just point, and you can see. Soon I am obsessed with the line, my thigh, my whole leg. Something is right there below my skin that is not supposed to be there and I can do nothing but take photos of it and text it to people, unsure of what I’m asking for other than belief.

I know how to live with pain that is not visible. I know that I must absorb it, then ignore it, over and over again, because there is nothing to be done for the unexplainable body of mine. Nothing will ever be found and no one will ever bother to look. But the persistence of this strange white line — the restless nights, the bruises — begs me to bring it under the microscope. To return to the ones who shaped me and say, here is something real that cannot be denied. The bruises, too, are something I can point to. They are not small purple circles, but erupting volcanoes with nowhere to deposit themselves. They seep down into my ankles, where the pain will bathe beautifully in the home they have robbed before starting the cycle again; the cycle that will churn in me forever. I want to peel back my skin and scoop out whatever is poisoning me, but can it be as simple as going into my body and taking something out? I grab a pair of tweezers and begin to poke and dig, determined to try. My thigh begins to bleed but I feel no pain, just stare at it as if my leg were a mirror showing me my reflection for the first time.

• • •

Now I am crossing the border. I research Babesia and Bartonella and read the articles and studies I have read so many times before, trying to find a new way to make sense of it. I make an appointment with a doctor and rile myself up, imagining every word the doctor may say, and how heroic my responses will be. How confident and capable I will become in that moment.

I post photos of my thigh in a Facebook group of 15,000 Lyme disease patients and immediately get responses. Someone posts a photo of a nearly identical white line on their arm and says it is Bartonella. Both of our lines look mysterious, like someone has sewn them into us. More people comment, asking questions, offering recommendations, sending hugs through a reaction button and telling me to stay strong.

After the articles and comments and texts and so much scrolling, I am in the familiar place of trying to solve my own pain while also telling myself that this is the last time. I consider buying a new tincture that has been used to treat malaria. I think of all the tinctures and supplements I have been on, how I’ve traded money for nothing in return time and time again. I imagine myself hacking at a white oak tree, peeling the bark and pushing it into every inch of me that has ever felt pain until I become something other than sick woman.

Illness can wash the logic from your brain, send you searching for the unknown, and you will run in circles for it.

• • •

When I go to the doctor, I know how I look and I know how I sound. I am prepared. I recite things in my head. I will be gentle and kind and believable, and ready to defend myself.

As I sit filling out paperwork in the waiting room with my mouth hanging open beneath two layers of masks, I wonder what the receptionists are going to say about me once I am shuttled into the room, while also knowing how small I am, how unnoticeable. No one is thinking much about me beyond the words patient, woman, girl. Beyond the word nothing.

The nurse circles something on her clipboard when I tell her there isn’t a day I’m not in pain; agrees with me when I say I can’t really rate my pain on a scale of 1-10. My body becomes hollow when the door shuts and I’m left in a white, silent room to wait for a doctor. But I am waiting for much more than that. It all feels like a play; taking the stage for the first time. I’ve spent so many weeks rehearsing.

“I’m just here for a few things,” I say. “First, I need a new birth control prescription because I just moved here from the UK, and I only have a couple of months' worth. I have also noticed a strange white line on my skin, and it’s concerning to me, so I thought it would be worth having it looked at. And I was also wondering if I can get disability plates for my car.”

I say this all slowly and carefully, but as soon as my lips draw to a close, I’m greeted with guilt. I’m an annoying patient. I need too much. My expectations are too high. She wishes I was an easier appointment. “One by one,” she says. “I don’t know if we’ll have time for it all.”

When she scoots over on her stool to look at my leg, I pull up my elastic-waist corduroys and see that the line is the lightest it has been in weeks. It is hardly visible and looks like nothing at all. I smile and say that it usually looks much worse, it usually is very prominent. She looks at it for three seconds before rolling away, unbothered. “I’ve never seen that before,” she says.

I step a little further, still being gentle. “I’ve spoken to other women with Lyme who have had the same kind of mark on them, and their doctors have told them it’s Bartonella. I don’t know if I’m able to have that looked at without seeing someone that my insurance won’t cover,” I say. She keeps typing and then offers a vague answer, saying the only thing she can do is run some blood tests. “I’m not going to test positive for Lyme or anything on those tests,” I say. “I never have.” She tells me that the tests are ‘so much better now,’ which is something I’ve been told for ten years. Being referred to these tests, which I know will be negative, is a reminder that I am never enough proof. What I say and what I show will never be enough, it will never align with what the doctors say it should. I wonder why I’ve come here, the anger rising up again. How many times will I fall for this? When will I realise all these appointments are painful stabs at the root of my trauma, of all I have tried to leave behind?

I flip over so easily, ready to sacrifice. I let her do what she wants. When we discuss disability plates, I find myself explaining why I would benefit from them, though I have already explained what it feels like to live in my body, and she knows I have been sick for half of my life. “I wouldn’t need to use it all the time,” I say. “But it would be really helpful for bad days when I need to get food, when walking is challenging, or I can hardly stand.”

The doctor says I should order my groceries online and pick them up so that I can avoid walking in the supermarket, like that is the only place I go. I tell her that would be difficult for me because I’m not good at planning my shopping in advance, and her response is that I should try and get better at it. But I don’t want to get better at planning a grocery pick-up, I just want to be able to park in the spots closest to the door. She asks if I can move in with family nearby and if they can get my groceries for me. Our conversation is being re-framed away from my needs, being presented back to me like I’m the one that hasn’t tried hard enough or thought of the right things. I’m too defeated, too infuriated into silence to tell her what she wants to hear — that that has never crossed my mind before, but now, because of her, my life will be infinitely better. I won’t be disabled anymore when I move in with a family member and stop going to stores.

I don’t get disability plates because I am not sick. I do not deserve them — my words are only ever a tease and a lie. I have brought myself here again by crossing the border when I should have stayed where I belong, submerged in sickness. Twelve years of illness is crossing and re-crossing, backtracking and building, bashing and exposing, infinite questioning and what if. In a few weeks, the line will fade and the bruises will retreat, and I will follow. I will soak in the mystery of pain and fatigue until it is comfortable again.

I’m told that even if the bloodwork all comes back normal, I will receive a call to discuss next steps and that maybe I can get a scan of my thigh. But all I will receive is a letter saying how delightful it was to see me and that I am in great health, alongside a bill for $104.

I sit in a chair in the middle of the practice for ten minutes, nurses and receptionists chatting away around me, passing a tin of cookies. No one looks at me until the vials are wrapped in a sticker with my name and I make a fist with my left hand, stare at a single tile as the needle slides home.