It’s usually special and a bit thrilling to be told that you’re one in 200,000.

But when I turned 17 and my cystic acne hit like a category 5 cyclone, I felt like I’d been cursed.

After initially informing me of the rarity of this painful, disfiguring, and undesirably rare skin disease, my dermatologist helpfully added that I was the worst case he’d seen in two decades.

I knew nothing about acne before then, beyond it being a temporary affliction that could be cleared up with a greasy ointment or maybe antibiotics.

Genetic study of people with acne raises prospect of new treatment Read more

Zits were no big deal, or so I thought.

Little did I know the symptomatic hell that was about to be unleashed on my body in the next six months and beyond.

I tell my story now, more than 30 years after the fact, not to garner pity or sympathy; I moved through that stage long ago. Maybe it’s to help me understand it better, or show others that there’s light at the end of the very dark tunnel that cystic acne plunges you into.

According to the Medical Journal of Australia, acne is a chronic inflammatory disease of the pilosebaceous unit resulting from androgen-induced increased sebum production; altered keratinisation; bacterial colonisation of hair follicles on the face, neck, chest and back by Propionibacterium acnes; and an inflammatory response in the skin.

MJA notes that: “Scarring that occurs from acne, particularly severe acne, can persist a lifetime and have long lasting psychosocial effects. Depression, social isolation and suicidal ideation are frequent comorbidities in acne.” Gulp.

Acne is one of the most common skin conditions in Australia. A smaller slice of the population develops cystic acne, the most severe form of acne vulgaris marked by large, inflamed lesions that form deep within the skin and can result in painful, large bumps visible from the surface.

I was unlucky enough to fall victim to the most severe form of the worst aberration of acne. Both the condition and its after-effects have shaped my character in ways I’m only now beginning to understand. Mostly positive. But more of that later.

Facebook Twitter Pinterest Section through human skin with acne.

None of this impending destruction was visible on my skin when I was going through puberty. As with many teenagers, I had only mild acne develop when I was 16. In fact, my face and other parts of my body were unmarked by even tiny pimples.

That changed quickly. In the winter of 1984, I began to get subsurface lumps on my back without even going through the blackhead or whitehead phase. I can’t remember much about the first time around. All I recall that it came and went pretty quickly and went away mostly of its own accord.

Things were a bit different in around March 1985. Again, it erupted from a standing start. Out of nowhere began a steady march of lumps around the size of a 20-cent piece sprouting from my body.

First across my back, then my neck, then my face. It didn’t take long, maybe a couple of weeks or so, before I started turning into a real freak show. My back and halfway down my arms became a bloody, pustulent, seething mass of scabs and infection.

When most people hear the word “acne”, they think of a small, sporadic problem that causes minor irritation before things return to normal once puberty ends. But my case was markedly different.

I soon sought coping strategies. After a couple of days of my white school shirt turning red and black, I started wearing white undershirts so the dried blood and pus wouldn’t show through.

Every afternoon when school ended, I went straight to the boarding school’s shower block so I could remove my undershirt – and with it, half the skin off my back. The back of my neck was similarly afflicted, with my hair sticking to the wounds.

At night, I found it impossible to find uninterrupted sleep. The slightest movement would put pressure on my skin and wake me up with the searing pain. I was forced to use my recesses and lunchtimes to grab short naps, otherwise I would’ve fallen asleep in class.

A number of cysts merged to form an almighty abscess which was probably visible from space

For a few months, I kept a dream diary to chronicle my descent into nocturnal madness. But eventually the images and scenarios that I faithfully recorded became too disturbing. I burnt it symbolically in the hope that it would purge me of my nightmares. It didn’t.

Then, the devastation began to spread across my face like a landscape scorched with napalm. While I had a number of isolated outbreaks across my cheeks, the worst reserved itself for my right-hand jawline, where a number of cysts merged to form an almighty abscess which was probably visible from space.

One day, when I was lining up to go into English literature class, another boy accidentally bumped me with his shoulder, breaking the surface of my abscess and causing it to bleed. I removed my white jumper vest to stem the bleeding.

By the time I had reached the school hospital, the vest was entirely soaked with blood. The nurse tried to patch me up with stitches, but because the skin was like tissue paper, she couldn’t do much. For the rest of the day, I had to wear a big gauze patch and a bandage around my head and jaw like a gout patient.

In my sleep-deprived haze, I struggled to get from boarding school to the city once a week to endure a session with the old-school dermatologist to whom I had been referred. He couldn’t do much aside from squeeze a whole load of sebum out of the blackheads and whiteheads on my back among the worst of the infection.

He used to show me the end results as if it constituted some form of victory over the hideous disease. But I remained uncured. No wide-spectrum antibiotics, sulphur ointment, or topical creams made any difference. And worse still, my condition just seemed to be getting worse.

It was at this point that I contemplated killing myself. Yet that contemplation passed soon enough. I decided that if it hadn’t killed me yet, I wouldn’t finish the job myself.

The daily mocking and torments from my fellow students didn’t help, but it was nothing compared to the unending physical pain that felt like it was corroding my very being. I felt like I was slowly melting away.

At the same time, my school grades and extra-curricular activities were suffering accordingly. In hindsight, it seems ridiculous to contemplate that I was attempting my Higher School Certificate – now the VCE – in the midst of all this.

Seven ways ... to manage acne Read more

It was perhaps unsurprising that the private school I attended was generally unsympathetic, contrary to their claimed ethos of “pastoral care”. I recall clearly the deputy principal telling me and then my parents that the disease was a punishment from God for being a miscreant. He’s dead now. Perhaps in God’s care.

I had to give up playing rugby for obvious reasons and spent a lot of time in the makeup chair before taking the stage for the lead role in the school play. I stemmed the occasional flow of blood with a handkerchief while playing the narrator in Thornton Wilder’s Our Town.

My interaction with the opposite sex was distorted by my own perception that any half-smart girl wouldn’t want to come within five metres of me. Yet through a miracle, I attracted some attention. This included a school dance where I got along just fine with a gorgeous girl who I later found out was school captain. Later I also heard she was heartbroken when I refused to return her numerous calls, preferring the misery of my own company.

And then, in the winter of 1985, my salvation arrived – a drug called Roaccutane. It belonged to a group of medicines called retinoids. They work by reducing the amount of the oily substance – or sebum – made by glands in the skin, reducing bacteria and inflammation, and opening clogged pores.

On the whole, it was a pretty vicious treatment. The list of side effects read like a piano roll. In addition to drying up your mucous membranes, the Roaccutane also dried out your skin, mouth, eyes, lips, and nose. It caused itching, nosebleeds, cracked skin, joint and back pain, dizziness and drowsiness. Oh, and nervousness, and changes in fingernails and toenails. To add insult to injury, the Roaccutane actually made the acne get worse before it finally started to improve.

Before I started on the drug, I had to sign a document confirming that I wasn’t pregnant and didn’t plan to get knocked up. The drug was known to cause spontaneous and immediate abortion. The Department of Health also had to give special approval for me to take it in the quantities necessary to have an effect.

To this day the knowledge that I had come back from such a dark place gives me untold resilience and strength

But Jesus, Mary and Joseph … the drug worked.

After several months of intense treatment, my acne cleared up completely. But my scarring was immense. Halfway down both arms and my entire upper back and shoulders looked like I’d gone ten rounds with a blowtorch. And my face was a real mess. When I began interviewing people in my early career as a cadet journalist, they couldn’t stop staring. No one ever asked why I was so scarred.

At this point, I took up my parents’ offer to fund plastic surgery. The operation was a success, but I went into full hermit mode for six weeks after, hiding indoors because my new skin was too delicate to expose to the sun. My face was as pink as a newborn and about as tender. The doctor didn’t even attempt to touch my back. All my flat scarring meant I didn’t have enough skin on my body to trouble with a graft. When it was all over, my physical appearance was closer to normal. Only in certain light did one side of my face appear to have lost an argument with a spiked mace.

Over time, I became proud that I had endured such pain, and to this day the knowledge that I had come back from such a dark place gives me untold resilience and strength.

‘Pimples are in’ – the rise of the acne positivity movement Read more

I have sought explanations for why this happened to me but no answers have been forthcoming. Hyperactive lymph glands, rapid metabolic rate, and so-called “tubercular taint” (left in the DNA from an ancestor who had tuberculosis) have all been proffered as potential factors in the viciousness and rapid onset of my cystic acne.

If there were any other positives to emerge from this experience, it was my attitude towards superficial appearance and vanity. My trauma had shown me that real beauty lies far beneath the skin, and that people can be at their cruellest when taunting others who don’t measure up to their own standards of physical normality.

It was some time ago that I gave up on quaint notions of redemption and being punished for sins in past lives. Instead, something that a mate recently posted on social media seemed to resonate.

The Japanese art and philosophy of kintsugi – translated as “gold scars” – tells us that broken objects are not something to hide, but instead to display with pride. Repairing broken ceramics gives a new lease of life to pottery that in turn becomes even more refined and unique because of its “scars”.

Kintsugi suggests that we should try to repair objects, and by extension ourselves, because sometimes in doing so we obtain even more valuable things.

That was my choice. To move through the darkness into light, and in doing so become whole again and stronger at the broken places.

• In Australia, the crisis support service Lifeline is on 13 11 14. In the UK Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. Other international suicide helplines can be found at www.befrienders.org