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The Battle to Adhere to Beauty Standards When You're Chronically Ill

My 15-year-old self gasped at the TV. I had acne, just a sparse teenage pimple or two –on my face, that is. But around age 11 or 12, I’d started developing painful spots around my groin area. I put the cause down to my weight, puberty, shaving and the sensitivity of my pale Irish skin.

Fast forward a few years and those first “spots” have become purple discolorations or permanent lumps on my skin. New spots tend to grow into medium-sized, tight, blood or pus-filled boils, which are now in my armpits as well. Sometimes they silently retreat back from whence they came; more often they rupture, if I don’t rupture them myself, to ease the pain and pressure. When they rupture, they don’t heal like normal spots but instead remain like an open wound, before finally decreasing in size, leaving behind a little hole or tunnel. It’s like a little dormant volcano waiting for its time to shine; many of them recede only to return to the surface, threatening another eruption. Occasionally all appears well on the surface, but a magma chamber of inflammation can be felt lurking beneath. With no current route of release, it might decide to join up with a neighbor to use its vent and these “mini Mount Ednas” can leave a ghastly crater when they’re done.

I already knew something wasn’t right, but I’d never found an answer beyond my mother revealing that her brother, sister and she, experienced this on various areas of their bodies for years. They even sometimes had them lanced, which is when I first learned of the medical procedure of incision and drainage.

I scoffed that I didn’t need a doctor for that — I could do it myself. She warned of introducing bacteria and further infection, to which I paid heed. But as a teen with blossoming anxiety, there was no way I was even telling a doctor, let alone show them! But Google had no answers I could find. I hated it and hated my body!

So one night when watching a program I enjoyed, called “Embarrassing Bodies” (airing in the UK), I listened and watched in awe as a woman explained her symptoms to the doctor on screen before having an examination and referrals for treatments made. They sounded just like mine.

They told her, and (and me) that she had hidradenitis suppurativa, a rare (affecting one to four percent of the population), recurring, skin disease characterized by painful abscesses and scarring.

Although it would be a while before I was officially diagnosed, it was relieving to read the positives, like how early intervention and management prevents the worsening of the condition. I was happy to know it’s not contagious and not related to poor hygiene.

I quickly headed to the show’s website, which they’d linked for anyone wanting to learn more — and I did. I discovered it’s often hereditary, later I realized some of my siblings had it too. I learned there’s no cure, but they had recommendations for managing it, such as not using fragranced products or perfumes, wearing loose clothing and not shaving. This is all advice I dutifully ignored as a teenage girl trying to attempt to emulate a stereotyped form of womanhood. How could they expect me not to wear perfume? How could they expect me not to shave my underarms, legs and bikini line (waxing was out of the question due to embarrassment and it would still have aggravated the symptoms.)?

What was the alternative, I agonized?

Perhaps if I’d used the information I’d excitedly grabbed onto that night, I could have had an alternative to crawling around my house for three days because I’d shaved, and now had a golf ball-sized abscess on my pant line. It felt as though it would explode, taking half my flesh with it whenever I tried to stand. I was unable to go to the doctor even though I finally wanted to. I was reluctant, because on top of my mental health issues, I also guilty– because despite my knowledge, I still shaved, I still wore perfume and soaked in fragranced baths and I still wore fancy underwear I knew could spark a flare.

By continuing to adhere to constructed beauty standards, I knowingly worsened my condition. It has spread, over the years, to the backs of my legs, buttocks and more recently my breasts and face, because make up, of course, contains fragrance or other irritants as do most of the “sensitive skin” creams available.

Yet, I simultaneously lamented the progression while doing little to prevent it. If only I had listened, if only I would listen still…

Very recently, I sobbed with grief the day a massive, painful lump formed on my breast. I sobbed not because I worried I had a cancer-like lump, but because I knew my condition had come to mar, scar and disfigure another part of my body.

But when you’re in too much pain to sit, stand or shower, or when you’re too depressed to do so, then perfume or deodorant is a quick but risky fix. And when I’ve come out of a depressive episode, shaving and showering with my favorite scented washes helps me emerge feeling like a living being again. (The doctor prescribed antibiotics, an antimicrobial, as well as no fragrance, and a no-lather shower wash… it feels like washing with mayonnaise, except mayonnaise smells nicer!)
Although, I’ve implemented minor changes that have helped, like shaving less often and perfuming outer layers of clothes instead of directly on my skin. I wear loose clothes and underwear. I switched from a rough scrubber to a soft wash cloth to prevent friction. Switching to natural fibers made a massive impact, and I seriously recommend women with this condition to switch to a natural material menstruation pad, as the common synthetic plastic ones wreak havoc at a time when you’ve got enough pain to be going through.

I’m trying my best to follow the guidelines so I can manage my symptoms better these days, but it often feels like a constant battle between doing what’s best for my condition and doing what’s best at the time for my-self esteem and self-confidence — all in the midst of major depression and anxiety. My mental health, in turn, is negatively affected by the flaring of symptoms that I have contributed to in misguided attempts to raise my spirits.

Hopefully some day I’ll find a balance or at least some self-acceptance. But I’ve realized this: when it comes to taking care of your chronic illness and mental health, it’s no easy tightrope to walk.