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Inking Against Invisibility

In the face of chronic pain, invisible illness, and medical discrimination, Talia Hibbert turned to tatoos to reclaim ownership of her body.

Talia Hibbert | Longreads | January 2020 | 8 minutes (2102 words)

When people see my tattoos, they ask me, “Did it hurt?”

My mind says, “That depends. Do you know what hurt is?” because my mind has a bad attitude and a flare for the dramatic.

My mouth mumbles, “Not really,” because my mouth is shy.

Honestly, I’m never sure what people mean when they say “hurt.” Most of the world is visited by pain; I’m handcuffed to it. I’ll describe it to you on the day you tell me what it’s like to breathe.

Another favored question is, “What do your tattoos mean?”

Most people are astonished and appalled when I say, “Nothing.” They can’t believe I don’t know what kind of flowers are inked on my right shoulder, or the species of the bird on my shoulder blade. They’re horrified to hear I have no particular fondness for octopuses, as if the one living on my left thigh might take offense. I rarely explain that the word ICON is tattooed onto my ribs because one day, while in an especially good mood, I heard Jaden Smith’s Icon and was delighted by the unapologetic rap-god arrogance. Aside from anything else, society generally disapproves of arrogance — but I needed it. My body needed it.

Some days, we still do.

The complicated truth is that the story behind each tattoo’s design means far less to me than my decision to get tattoos in the first place. Yes, they hurt. They stung and scratched and burned, some places worse than others, but I barely noticed. And if you read that sentence in a grim, rage-y, action hero voice — good, because that’s how I said it. I’m Judge Dredd the Barbarian Warrior Princess, also known as a sufferer of chronic pain. Ink marks the sites of my major physical trauma, because for years, people tried to tell me that trauma wasn’t there.

***

I was born with hypermobile Ehlers-Danlos Syndrome, not that anyone was aware of it. When my mother held me in her arms for the first time, she didn’t peer at my tiny knees and elbows and say, “Hmmm, looks suspicious. Let’s get her tested for a genetic disorder that causes significant musculoskeletal complications and chronic pain.” 

Tattooing the sites of physical trauma on my body, like beautiful X’s marking the spots no one wanted to see, was my promise to myself that I would never again fear making a fuss. 

Time ticked on, I grew up, and with that growth came symptoms of the Condition No One Knew About. I, a firm believer in mind over matter, did my level best to ignore all the symptoms. Joint dislocations and subluxations (dislocation’s annoying little sister) passed me by with minimal fuss. On the day my ribcage bulged violently out of place, I had a military uncle shove it into the correct position and wrap me up. “That looked like a slipped rib,” he frowned, “but you didn’t do anything.”

“I’m fine,” I told him. “Let’s not mention this to Mum. There’s no need to cause a fuss.”

“Well,” he said, eyeing me dubiously. “I suppose you must be right. You certainly look fine.”

Yes, I did. In fact, I looked very well. I was a big, strong, sensible girl, one who kept up with the other children and never complained. Tall and solid, like my father, allergic to tears and nonsense, like my mother. I was the definition of fine, both physically and mentally.

How strange it is that society’s broken perception of “health” once worked in my favor.


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I weathered dislocated arms, subluxated hips, nerve damage, a little light lock jaw (easy to hide when you read more than you speak) and various other disasters until the day came when I could no longer function. In my teens, I was finally forced to confess all; to admit there was something gravely wrong with me; to — shudder —ask for help. When I confirmed everything my mother had started to suspect, she cussed me for approximately 547 hours, but then she promised me that everything would be okay, and I dared to hope. 

Oh, how I hoped. When people ask me if my tattoos hurt, I should say, “Not as much as my first visit to a pediatric consultant in 2010.”

I was giddy with nerves and with cautious, ridiculous optimism. In that brightly-painted doctor’s office, I told a complete stranger everything: the pain, the dislocations, the numbness, the days my body simply wouldn’t work. I took several pauses to catch my breath so I wouldn’t cry in public. When I was done, the doctor asked me to leave the room so he could talk to my mother privately.

“No,” my mother said. “This is about her health. Anything you need to tell me, she should hear it too.”

The doctor sighed, removed his glasses, and proceeded to tell us both that I was a fantasist. I was an attention-seeking little trouble causer, and were there any issues at home? The things I described were impossible, and therefore lies. Hips and arms jerking in and out of place, rogue ribs, numb legs? He’d never heard the like. “Look at her,” he said. “She’s perfectly healthy. She is absolutely fine.”

My mother, somehow, remained calm. She took my hand and stood. “Thank you,” she said, “for completely and utterly wasting our time. We will have to find a better doctor.”

But that endeavor took years, and those years took me. Sometimes we’d hit the jackpot: a kind, open-minded medical practitioner who believed my account of my own body. But even those people didn’t know what was wrong; they’d diagnose one condition, then find several more symptoms. They’d attempt medication or therapy, and it would always fail. So they’d pack me off to another expert, and my game of Russian Roulette would start again.

What would it be this time — kindly bafflement, or open disdain? All too often, I experienced the latter, and it chipped away at my mind and soul. Even now, at hearing the word doctor, stony, unsympathetic faces blur in my memory and I feel nervous sweat prickle my skin.

If I hurt, they said, it was down to my weight; according to the BMI chart, there was too much of me. So for months, I ate nothing but slices of brown toast and tiny satsumas. I jogged every day, feeling the bones in my knees and hips grind together, stumbling when I forgot to keep an eye on my numb leg. I tried to stop being “too much,” so that I could stop hurting.

The next doctor pointed to the BMI chart and said, “You are underweight. That’s most likely the issue.”

Look,” I begged one consultant, and smacked at my own thigh until it bruised. “I can’t feel it. Look at this!” I tried to raise my right arm over my head, but it had never been the same since its first dislocation. “It won’t go any higher!” The consultant, being very clever, noticed that I was depressed, anxious, and slightly hysterical. Those issues were to blame, he decided, for my persistent and pathological lies. I will put this plainly, because there’s no other way to put it: I began to hate myself. My body was my enemy. My mind, according to medical experts who should clearly know, was untrustworthy and possibly malicious. Hadn’t my instincts warned me from the start? I should never, ever, have made a fuss. 

Did my tattoos hurt? Nowhere near as much as silenced trauma does.

***

If you’re starting to lose hope, just like I was, know that this story has a happy ending. It has tattoos. 

The first ink I ever got was on my thigh. The artist asked if I was a newbie, and should she go slowly. “No,” I said, “let me feel it.” Because, by the time I turned 18, my nerve damage had improved to the point that I could feel it.

When she looked up halfway through to see tears in my eyes, she scolded me. “Why didn’t you say something? Do you need to take a break?”

I freaked her out enormously by grinning like a loon. “Nope! I most definitely do not.” Then I laughed a little, just to myself, at the idea. The pain I lived with every day was dull and torturous all at once, but this was bright and new and deliberate. Chosen, beautiful, mine. I didn’t want a break. I wanted more.

When the session was finished, I looked at my swollen, bleeding thigh and felt as if I knew myself again.

Of course, I never would’ve reached that point if it weren’t for my mother — tattooed herself, chronically ill, and an expert in flipping the bird to the entire world.

“They aren’t seeing you right,” she told me years earlier, in the midst of the countless appointments from hell. “Doctors are like this with me, too. We have to keep trying.” She was talking about the biases: the sexism, the racism, the ancient, crumbling, poisonous ideas that made up the foundation of our society’s beliefs. The ones that said I was female, so pain was my God-given burden, and anyway, women were all sly, lying cows. Then, of course, there was the issue of racial bias. The idea that black women, in particular, are animals incapable of finer feelings like suffering, dates back to chattel slavery — and you know what they say about old habits carved into global consciousness: they die hard. There are modern studies to prove it.

I knew these things to be true, so I listened to my mother, and as always, it paid off. We took matters into our own hands, researched my symptoms, printed out a description of Ehlers-Danlos, and brought it with us to an appointment.

The doctor frowned, hummed, and said, “Let me write you a referral.”

That was the turning point. Soon after, I was finally diagnosed.

***

Of course, there is no cure for my condition. I am still sick, I am still in pain, I still require constant physical therapy to live the way I want to. I often use walking aids. I don’t do the things my able-bodied agemates take for granted. And I’m glad. 

Because all of that means my body is finally understood, accepted, cared for. I’m not trapped in a twisted me-against-me thriller, trying to figure out if it’s my meatsuit or my mind who is betraying me. The reality of my pain is not being denied by those who claim to know better, or trapped behind my own clenched teeth. I know now that relative health and happiness are worth so much more than noble, silent suffering.

The complicated truth is that the story behind each tattoo’s design means far less to me than my decision to get tattoos in the first place.

Tattooing the sites of physical trauma on my body, like beautiful X’s marking the spots no one wanted to see, was my promise to myself that I would never again fear making a fuss. Did my tattoos hurt? I know, logically, that they did — but they felt so blissful to me. 

For the slipped rib my uncle didn’t understand, I got my ICON tattoo. During the session, I sat a few meters away from a bearded man who was having a fish bowl tattooed on his belly. He winced when he saw my chosen placement. “Ribs? That’ll come keen.”

I smiled.

Twenty minutes later, he raised his eyebrows and let out a low whistle. “Look at you,” he said. “Sitting like a rock.”

I smiled again.

The flowers on my once-dislocated shoulder begin just above my right breast and curve around onto my back. The outstretched wing of the bird hovering beside them almost brushes my spine. When I move my arm too quickly, everything clicks and grinds and aches and I feel queasy. But when I look down, reflexively, at the source of my discomfort, I see my flowers and remember the pain I chose instead of the pain I hid.

Did my tattoos hurt? Yes, and they still do. Beautifully.

***

But I don’t think I need any more — and if I ever do get inked again, it won’t be to keep up the tradition. You see, I don’t think my condition itself traumatized me; I think society’s reaction to it did. There are still days when I wake up feeling like a bag of jumbled bones, and I know that if I get up and do all the things able-bodied people expect of me, I will hurt myself. I spend long moments worrying that I’m exaggerating, that I’m lying, that I should deal with it regardless because I’m strong. Then I remember the octopus on my thigh, the bird on my shoulder blade, the word on my ribs — a reminder. My body is mine. My pain is mine. My needs are mine.

I’m real, I matter, and nobody can tell me different. The truth is inked into my skin.

* * *

Talia Hibbert is a British romance author who lives in a bedroom full of books. Supposedly, there is a world beyond that room, but she has yet to drum up enough interest to investigate. She is the author of Get a Life Chloe Brown (Nov 2019) and the forthcoming Take a Hint, Dani Brown (June 2020).

Editor: Sari Botton