What Tattoos Mean for Women With Chronic Pain

There are not many things I can control about my chronically ill body. Even now, I'm writing this from bed with an ice pack balancing precariously on my head. The curtains are drawn. The brightness settings of my computer are at the lowest they can go and still, the light hurts my eyes. I check the clock to see if it's time to take my next round of painkillers. It's not.

I know there was a time before I was sick but I cannot remember it. After a lifetime of migraines, a bout of thyroid cancer at age 22, and a traumatic brain injury at 25, I have gotten to know the darkest parts of my body: It can be unruly and wayward and exhausting. It does not listen to me. It does not always feel like it even belongs to me. But I still have to live in it. So, like a person stuck in a dank and peeling one-bedroom apartment, I decorate to make it more liveable.

In the first few weeks of 2019, I got into a car accident and hit my head on the steering wheel hard enough that I lost consciousness and woke up in the hospital. I had suffered a brain bleed and concussion. Three months later, I got my first tattoo — a tiny arrow on my left wrist, pointing forward. A year after that, when I learned the true severity of my traumatic brain injury and all the effort and resources and experiments it would take to possibly overcome it, I decorated again. This time, a sprig of lavender on the back of my right arm. Both of my tattoos are small reminders: somehow, you are moving forward. The calm will come again.

Pain was always part of my story. When I was a child, I tried to explain the throbbing of my migraine to my mother saying, "My head has its own heartbeat." I have been pulled into a vortex of hospital stays, surgeries, check-ups, blood-draws, and radiation. Every morning for the rest of my life, I will take a pill to replace what cancer took from me — and I know I'm lucky, because I get to wake up every morning and what was taken can be replaced. But it was still taken. I hit my head so hard in the accident that little pieces of gels and proteins from my eyes were dislodged. They float in front of my vision much of the time now. My tattoos do, too.

After watching needles, scalpels, and MRI machines have their way with me, I wanted to make my own decisions. Whether recovering from a chronic illness diagnosis, injury, or trauma, ink is an empowering way to move forward. It is a way to say: This body is mine and I have a say here.

Talia Hibben, a 25-year-old writer with Ehlers-Danlos syndrome and fibromyalgia, among other chronic conditions, has gotten four tattoos in the years since her diagnoses. All are positioned on areas of her body where she's experienced the most pain related to her condition: her ribs and upper arm and shoulder area. Her favorite tattoo is the word "ICON" on her ribs (taken from a Jaden Smith lyric). She says she didn't put much thought into that tattoo — she just loved the idea so she did it. "The fact that I could just make a decision about my body and there was no changing it, that's usually not something I can do. My body is usually the thing I can control the least, so there's definite pleasure in that."

It's not uncommon for chronically ill women to turn to tattoos or piercings as a way of reclaiming their bodies. Some choose a design that represents their disease and others chronicle how they live with it. One common tattoo theme for chronically ill people is that of spoons, taken from 'Spoon Theory,' a personal story by Christine Miserandino. (In her analogy, spoons represent energy, and for chronically ill people they are precious and finite. Everything we do in a day — including eating, getting dressed — takes away a spoon.)

Some people choose to tattoo over scars they have from treatment. Trish Baden, a 33-year-old Los Angeles-based candlemaker, went this route when she was left with six PICC line scars after an intense case of Lyme disease attacked her brain and nervous system. (A PICC line is an IV line used for long-term intravenous medications. In Trish's case, her PICC line was used to deliver antibiotics.) She had a tattoo of Jupiter inked over her first PICC line scar and plans to cover the other scars in the future.

"It's the beginning of my journey of reclaiming," Baden says. "I'm doing an eminent domain process on my body where it's like, 'Hey, y'all have camped out here, but it's my turn to take back over."

The ability to make a choice about her body was a powerful experience, Baden says. "With chronic illness, you don't get to choose. A lot of your life is just handed to you and you have to absorb and deal. So the ability to choose the design and location was so freeing for me. It gave me a lot of power back over my body."

According to Ghinko, a tattoo artist at the popular Bang Bang Tattoo parlor in New York, it's not uncommon for women to choose to get tattooed after experiencing trauma, which is its own kind of chronic pain.

"Tattoos solidify victories to those who fought invisible battles," Ghinko says. "Tattoos give hope to those who have been beaten. The list goes on, the stories are endless, but the most special power of tattoos is they give a choice to the women who've been given none."

When Lauren*, whose name has been changed for privacy reasons, was sexually assaulted, she was left with a defensive wound across her palm. "I hated looking at my body and seeing a physical reminder of that night," she says. "I wanted to see something that I decided to put there."

What she decided to put there was the now iconic words Senator Mitch McConnell said about Senator Elizabeth Warren during the confirmation hearings of Jeff Sessions. "She was warned. She was given an explanation. Nevertheless, she persisted," McConnell said. Lauren, and hundreds of other women across the country, adopted the phrase as a rallying cry and inked it onto their skin.

"My whole world was turned upside down that night," Lauren said of her assault. "But the sun still comes up and there's still work and school and the whole world is going on. So it was just a reminder that nevertheless, even though these things happen, you just have to persist and keep going on."

The desire for a reminder of fortitude is something Ghinko comes across often in her tattooing work. After posting a design on Instagram of a warrior helmet and flowers, and opening her inbox for people who'd want that tattoo, Ghinko chose to ink it onto Kat*, a woman who had been disowned by her family after being molested at a young age. Kat then joined the army where she experienced more abuse. She told Ghinko what the design meant to her — the cracks and dents in the helmet represented the "wear and tear" she had gone through in her life.

Ghinko says Kat explained wanting to use her painful experiences to "better the world somehow by making something that was horrible and ugly into something beautiful," and clients like this have shaped her into the tattoo artist she is today.

Avril K., who struggled with self-harm after experiencing sexual abuse, says her tattoos are partly about control. "[I had] a piece of myself stolen and not only am I taking control of myself and my body back, but I'm adding to it. I'm creating art." She has a blackbird tattoo after the Beatles song, along with a semicolon, a well-known tattoo design for people who suffer from suicidal ideation or self-harm.

"[The semicolon] means that the sentence could've ended but it didn't," Avril says. "The wrist I have [that tattoo] on has a lot of self-harm scars, and there are some that could've stopped my story and they didn't." And on days when her mental health isn't where she wants it to be, she says it helps to look at her tattoos and remember that there is a part of herself she likes. She can hold onto her tattoos for strength until she comes back to herself.

If you are looking for tattoo ideas to memorialize your own illness, Ghinko suggests researching the tattoo style and type of design that best reflects your experience. Since these are so personal, you want to find an artist who will do it justice, but you also don't want the entire piece to feel like their point of view rather than your own. "The healing is so much more effective when you are comfortable. [For you] to be comfortable, the artist needs to be able to execute your vision and provide a welcoming atmosphere." Still, she says, "It is an indescribable honor to be trusted with such stories."

Last week I texted my mom and said: "Have you ever thought about what a miracle it is that I'm alive?" Often, when I think about my body, I am in awe of its strength. But there will always be days when I am at war with my body instead, when my head is having its own heartbeat, and I wanted to leave a reminder for myself on those days. A tiny arrow, a sprig of lavender, to help me remember that I am healing and moving forward and the calm is coming. I may not feel this way now but I felt this way once and I will feel it again. And until I can feel it, I can look down at my wrist and at my arm and see the proof.

If you or someone you know is contemplating suicide, call the National Suicide Prevention Hotline at 1-800-273-8255 or text Crisis Text Line at 741-741. If you have experienced sexual violence and are in need of crisis support, please chat online or call the RAINN Sexual Assault Hotline at 1-800-656-HOPE (4673).