skin

Do you know what it’s like to be trapped in your own body?

I’m not talking about being trans, although I am transsexual.

I’ve had severe chronic eczema for as long as I can remember. Most children with eczema outgrow it during adolescence, but a small percentage continue to have it into adulthood. I was one of those children. Like other chronic illnesses, skin conditions have their popular stereotypes and misconceptions, including those that minimize just how difficult they can be to manage.

Even as a baby, I had patches of dry, red, and sometimes broken skin. As I grew older, it covered more than 50% of my body. I had these permanent red bumps and rashes on my ankles, my knees, my inner thighs, my chest, my face, my ears, and my arms—all the way from the shoulders to the wrists and even the backs of my hands. I had it on my neck, where the skin broke along the folds and bled. It was noticeable enough that someone once asked me if I had tried to harm myself. I had rashes on my eyelids that made me look permanently tired, and my eyes were always sore. 

Any part of my skin that wasn’t already inflamed was activated by sweat and humidity, which could be from physical activity or just standing outside on a hot day. It would come with burning, bleeding, and hives. The already-existing patches would get worse, and so would the itching. When the weather got dry my skin would just crack on its own. All these climatic shifts would leave me in a cycle of pain. In short, severe chronic eczema feels like your body is on fire. There is no better way of describing it than feeling trapped in your own body; an agonizing cage made of your own skin.  

But the itch was the most unbearable part. Atopic dermatitis leaves the barrier of your skin compromised, such that bacteria and allergens can more easily get in, and scratching only further damages the skin barrier. This causes a feedback loop: the more inflammation, the more you scratch, and the more inflamed you get. The urge to scratch is unbearable; it’s not a typical itch. When eczema itches, it takes every bit of focus you have not to cause further damage. It would leave me incapable of focussing on even the simplest of tasks; I had trouble concentrating on school work or following conversations. Some of the people around me would make fun and mock the way I constantly fidgeted and scratched at my skin, including friends behind my back. The comments I got were unrelenting, and contributed to the emotional toll of the illness. 

There is no ‘cure’ for eczema, and the only treatments (for cases like mine) are either affordable but ineffective or somewhat effective but absurdly expensive. This was especially the case when I was a child. While some developments have taken place, most treatments are still very inaccessible. Doctors and specialists prescribe a litany of topical creams, usually corticosteroids, that you need to apply to “the affected area” (in my case, everywhere) twice per day. To the extent that these creams did help, they worked too infrequently or insufficiently to really make an improvement in my quality of life. Even the few specialists I had access to in my isolated city had nothing new to suggest or prescribe. When I was hardly a teenager, an allergist did tests for me and confirmed what I already knew about environmental and food allergies. Then, as I sat in his office anxious and desperate, he said to me: “What do you want me to do for you?” Before telling me I wasn’t putting in the effort to avoid all of my allergens.

There were nights as a child when my mom would hold me as I cried myself to sleep because of the pain on bloodstained sheets. My mom did everything she could to help me; to find some kind of treatment that worked, to adjust the household products we used and the food we ate. In the meantime I had no choice but to continue using topical creams for the minimal difference they made. Other strategies that afforded relief were simultaneously harmful, or only addressed one of many symptoms at the end of the inflammation pathway.

In my late teen years, when my acne got worse, so did my eczema. I struggled more and more with my self-esteem and couldn’t look at my face in photos or the mirror. When my partner touched my face all I could feel was how rough and blistery my skin was. And every time I saw my parents or relatives, the first thing they would comment on was how bad my eczema was (or how good it was, which was rare and didn’t feel any better to hear). It was such a normal part of my life that commenting on my ugly skin was like talking about the weather.

Because eczema compromises the skin barrier, it leaves you more susceptible to infection. When I was about eighteen, my facial eczema suddenly started to worsen rapidly. I didn’t realize for a few days because it can be difficult to distinguish between an infection and a regular worsening of the condition. But after a week or so, the patch on my face started to become discoloured and discharge. Discharge also isn’t new with eczema: it’s called weeping. But this was on a whole new level, so I decided to go to a walk-in clinic about it (I didn’t have a family doctor at the time). As I suspected, I had an infection. By the time I started antibiotics, it covered a third of my face. It healed after a few weeks, but not the eczema, of course.

Medicalization.

That word is deployed whenever one needs to undermine or delegitimize selected forms of healthcare they don’t like, or don’t appreciate the need for. I’ve been at the mercy of medicalization on multiple health fronts, and often there isn’t consistency in the defence or criticism of the term. Being chronically ill and trans, I’ve fought tooth and nail to access what many healthy cis people would call “medicalization”. On the other hand, as an asexual, I completely reject any attempts to ‘treat’ me and readily criticize such forms of medicalization. Yet, many queer and straight people alike still pathologize asexuality, and asexuals are more likely to be ‘offered’ or go through conversion therapy than other queer demographics.

The fear of medicalization is one of the reasons people with chronic skin conditions are targeted so prolifically by alternative medicine, holistic wellness companies, and pyramid schemes. But that hesitation is also due to the very real trauma that chronically ill people have endured from medicalization. We’re desperate for relief, and the healthcare system has persistently failed us.

The problem with alternative methods and products is that they operate like skincare companies by presuming that chronic skin diseases are just the same as ‘sensitive skin’. For example, they use buzzwords like ‘all-natural’ or ‘organic’ in order to present as more trustworthy, ethical, or effective. But since most environmental allergens are ‘natural’, this kind of marketing is a red herring. Their products are often no better for skin conditions than an artificial cocktail of chemicals that at least attempts to target the somatic origins of skin inflammation.

To make matters worse, in both the public perception and the healthcare industry, chronic skin diseases are not regarded as severe or urgent because they aren’t ‘life-threatening’. In truth, quality of life can be abysmal; suicidal ideation and attempts are much higher among people suffering from various severe skin conditions than among the remainder of the population. Like every at-risk demographic for suicide, the standard for what constitutes ‘life-threatening’ is insufficient and long overdue for reconsideration.

I would argue this bias is partially because of the backseat status that mental health has been afforded in healthcare, and that the very real relationship between physical health and mental health is under-recognized. To address both the physical and mental health of skin patients, what we need is more accessible, more affordable, and more effective treatment. We need actually socialized healthcare; we need to remove administrative barriers, abolish profit-making, and fund greater access to information.

What we don’t need: people telling me to ‘accept’ the body I have; to just go to therapy or sprinkle some toxic positivity and mindfulness over the associated mental health problems. We don’t need our healthcare constantly debated and restricted by people who don’t have our chronic illnesses. We don’t need treatment to be banned or denied by insurance because of its potential risks or side effects; or because some people decided to discontinue it or found it harmful despite all those who were helped.

I’ve struggled with my skin longer than I have with my assigned sex at birth. And you know what? There isn’t a single criticism you can make about trans healthcare that doesn’t apply to dermatological care. The risks, the side effects, the rates of suicide, the gate-keeping, the financial and social cost… It’s all still there. All of the rhetoric is an attempt at obscuring the fact that every last one of us needs to alter our bodies, by whatever means necessary. It’s not a risk or a peculiarity of being alive, it’s a very condition for living—bodies must be altered.

My parents will tell you how deeply they hurt for me as they watched me struggle with chronic illness for decades. All they wanted was to relieve my pain and to see me feel confident about myself. They also understood that achieving those outcomes, given my material conditions, required medical care.

At various times in my life, skin health has resurfaced to the forefront of my struggles. For several months I’ve been fighting parasites in the insurance industry to access my medication, consistently on the precipice of either losing it altogether or winning an uphill battle of appeals. And all things considered, I’m in a privileged position even to have the supports I do to fight this battle. But I have no idea whether a month from now I’ll still have my medication, or if it will have been stripped away. 

As a working class trans woman, I subsist in a perpetual state of exploitation. The surplus labour, the unpaid domestic labour, and even the unpaid professional labour I do under the slimmest hope of a chance at a career that provides a liveable income—and all of this while being chronically ill. After a time, it feels unsustainable. Unbearable. My attempts at controlling the immediacy of the space that is my body provide diminishing returns as they fail to keep up with external pressures.

I don’t mean to flatten experiences and conflate all kinds of bodily change and illness with transsexuality. But in artistic or poetic representations of transsexuality, I do find something not only relatable, but translatable to my experience with skin illness. Whether the ‘monstrosity’ of Stryker’s Words to Victor Frankenstein, or the topography of Bellot’s Volcano Dreams, transsexuals in particular have contributed profoundly to interpreting the body—even the ‘tumultuous’ or ‘monstrous’ body—in poignant ways.

In fact, Volcano Dreams writes the body very differently than Frankenstein does. Far from “unnatural, technological,” the earth is a natural body—“tectonic, geologic, at times.” Maybe it’s a healing process, or just bare survival. Maybe it’s an unnatural beauty, or a natural horror. Maybe the earth’s “ceaseless tumult” is the cry of a world in pain.

Like my transsexual body, the earth has scars; so much of the beauty we find on the earth’s surface is scar tissue. From canyons and rift valleys to volcanic islands—like the earth’s scars, mine too are beautiful. But they’re also both the cause and effect of great pain. I have suffered in this skin – this tired, patchwork skin – grafted, mended, and scarred over years of intermittent physical and chemical weathering and therapy.

Medicalization.

Or, survival.