My life involves two kinds of needles. The first one is found at hospitals or doctor offices, a syringe that is used to test my blood, on the continuous quest to find out why my bones always ache and my body falls asleep in the middle of the day.
According to the nurses who draw my blood on a monthly basis, my veins are notoriously hard to find. My body doesn’t want to comply with the syringes, and bruises flower in my elbow creases as they try again and again. When I end up in A&E, usually multiple times a year, the late night staff complain as they try to stab a cannula into my hand. Stop twitching, they tell me. Hold still, they say. When those kinds of needles break my skin I usually look away. All of this makes me a difficult patient.
There is another type of needle, the one I seek out. When the sound of the tattoo gun starts, I focus in on the chorus of needles as they puncture ink into my skin, I breathe a sigh of relief as the burning begins. The tattoo artist tells me I’m a good sitter when it comes to tattoos in painful places. Tattoos are my therapy, my pain relief, my way to find autonomy.
In the last five years, I have spent countless hours in hospitals seeking help for my multiple chronic illnesses. I have been told what is wrong, what isn't working, and what little hope there is for solutions. For so long I’ve felt like a dysfunctional bag of bones. In hospitals, I see my body as the enemy, something I have to fight.
When you live in perpetual pain, it seems counterintuitive to seek out more ways to cause further hurt, but it is in fact something I spend a lot of time and money doing. I got my most recent tattoo, a set of girls’ faces on the back of my thigh, the day after an A&E trip. I was consenting to this pain, I was inviting it into my world and there was something beautiful in the result, I wanted it and that was revolutionary to me.
My body is currently home to 27 tattoos. They cover both my feet, the backs of my knees, and the fronts of my thighs. They’re on my ribs, my wrists, and ankles. Flowers, animals and silly cartoons, as well as jokes with my boyfriend, pacts with my best friend, a Moomintroll for my mum, and a vase of flowers for my grandparents. I collect tattoos like postcards of memories and experiences. But mostly, tattoos are a reclamation of my body, and evidence that it is mine.
I likely spend as much time scrolling online in bed as I do in doctors' waiting rooms, and that’s why I started to recognise how many other sick people were also tattooed. The more I considered this, the more it didn’t seem like a coincidence.
Augustine, 28, who asked that we didn’t use her last name, lives with endometriosis which causes her daily, debilitating pain. She agreed that seeking pain from tattoos feels like a much-needed distraction, plus a burst of satisfaction from a finite amount of pain. “Elective pain always feels nice,” she says. “Tattoos don’t hurt nearly as much as chronic illness does, so it feels like a nice distraction, this softer, more focused, constant kind of pain.”
15 million people in the UK live with a chronic illness. When you live within this body, you are commonly subject to rounds of interventions, surgeries, and tests that are usually beyond your full control. Disability justice scholar and activist Alice Wong talks in her 2022 book, Year of the Tiger: An Activist’s Life, about the medicalisation of disabled bodies. The idea is that our bodies are hosts to medicines, machinery, and/or medical institutions we must rely on in order to stay alive, but that there’s rarely empathy given to who we are as disabled people in these vulnerable moments. We are viewed by others as sites of sickness to be cured, or as faceless problems to solve.
I have felt this deeply with my own body. I struggle to acknowledge I am the owner of a body at all when healing from surgery. “Owner” implies that I have the power to decide what does and doesn’t happen to me, and that often isn’t the case in hospitals and within the medical system at large. Instead of feeling like medical professionals and I are approaching my pain as a team, I often feel gaslit by their recommendations and actions, since I’m rarely heard. I do hear their cruel comments, whether they realise that they’re making them or not.
Lauren Miner, 30, feels the same way. “My chronic illness is innately tied to past sexual traumas,” she tells me. “Multiple traumatic events led to post traumatic stress disorder, so now encountering medical invasions of those same parts of me, the way my body responds and reacts to pain and medical contact, is hard to process.”
“Last year, just minutes before my endo surgery, the consultant asked my mum instead of me, if she was really sure it was a good idea to go ahead, implying that she didn’t believe I was as unwell as I was saying,” she recalls. “It’s quite an incredible experience being put under general anesthetic knowing that someone who doesn’t respect you, your views, or your feelings, is about to literally touch your internal organs.”
I often view the experience of chronic illness as a twinning of pain. There is chronic pain you are living through, and then there is the emotional pain experienced in the spaces that are supposed to support you. So getting tattoos can be a way to heal that secondary set of emotional scars.
Lauren explained tattoos as healing for that reason: “It almost feels a necessary act for me to reassert my autonomy in some way after living in a body which has been medicalised without fully formed consent.”
Georgina Langford is a tattoo artist and co-founder of The Dollhouse, a feminist tattoo studio in Brighton. “I, and the artists I work with, practice informed consent intuitively and consciously, from the moment we first meet the client and throughout the session,” she says. “Throughout the appointment, I habitually ask the client how they are doing regarding pain and their energy levels and encourage them to take breaks. Especially for first-time clients, I like to talk them through every step of the process, every chemical I apply to their skin, and to explain what I’m doing as I proceed through the tattoo.”
This level of narration provided by an artist is a contrasting experience to medical settings. I recently tried a nerve-blocking procedure to help with pelvic pain caused by endometriosis. A bilateral ilioinguinal nerve block is a relatively straightforward procedure taking less than 15 minutes, however, if you’ve experienced trauma in medical settings before, every trip into the hospital can feel like a mountain you must overcome. Within moments of arriving in the room, the male doctor asked me what I was waiting for, and told me to take off my trousers, in an open space with three other members of staff. He then failed to explain any part of the procedure including when a four-inch needle would be entering my groin, and I left with symptoms that I wasn’t warned about, which triggered a panic attack.
By contrast, Langford feels strongly about informed consent in her studio, “unfortunately some of my behavioral choices have been shaped by how I’ve been treated in tattoo shops as a client,” she explains. “But basic human empathy should dictate that every person has a right to feel safe and respected in their own body and that particularly applies in situations where they are partially unclothed and in pain.” In an ideal world, I’d love for the doctors who treat me to share that same ethos.
What is it about bodily decoration that can reunite chronically unwell people with their sense of self? In their 2022 book Health Communism, disabled activist Beatrice Adler-Bolton deftly explains the disabled body as one viewed as less than to its non-disabled counterpart. When capitalist society is organised to view productivity output as the most valuable human resource, it categorises unwell people as surplus because they cannot prove their worth in the same way.’ This inherent ableism is baked into all parts of society, from the COVID inquiry to the inhumane benefits system. Decorating a body with patterns, making it unique and therefore louder, is a way to push back against such rhetoric that asks us to be quiet and accepting of less.
Samneet, 29, who asked that we didn’t use her last name, lives with long Covid and this hard-earned mindset. “In the last few years, I have begun to see my body more and more as a site of pain,” she says. “But my tattoos are an important reminder that my body is also capable of bringing me immense joy.” Augustine, who lives with chronic pain, shares similar thoughts on tattoos as a method of self-expression and acceptance. “Tattoos help me edge toward a feeling of this body actually being mine,” she explains. “They suture together the parts of me that feel like me – my likes, my thoughts, my desires – with a body that often doesn’t.”
As our community continues to experience pain without cures, and as medical systems continue to fail and even harm us in many cases, the desire to seek alternative ways to heal our minds and support our bodies will also continue. Lauren describes the seeking perfectly: “In many ways, being tattooed, decorating my body, and controlling the pain it experiences, is sometimes more effective than therapy or medical interventions.”
For as long as I live with chronic pain, I will seek out ways to survive, and tattooing will continue to top my list as the way I find joy, autonomy and peace in this body of mine.