Nine Years of HS: The Condition

I was seventeen when it started.

I remember that time vividly. Not because I knew what was happening, but because I didn't. Nobody did. Not me, not my parents, not the doctors who dismissed it as acne and sent us home with medicines that did nothing. I was standing at the edge of womanhood, wanting to feel beautiful, wanting to feel seen. Instead, I started to feel like something was deeply, terribly wrong with me.

Hidradenitis Suppurativa. A chronic skin condition that causes painful lesions, abscesses, and scarring, mostly in areas that are hidden, intimate, and impossible to explain to anyone. In India, in 2014, there was barely a name for it. There was certainly no community. No one who looked like me, came from where I came from, and said: I know this. I've been here.

What there was, was shame. And silence. And pain.

My parents are the kind of people who would move mountains for their child. And they tried to.

We tried English medicine, Ayurveda, Siddha, home remedies, naturopathy, acupuncture. I have had the bitterest things a human being can swallow. I have sat in clinics and centres trying fourteen day body cleanses, trying anything that might make it stop. I come from Tamil Nadu, a hot place, and I naturally run warm. My parents wondered if it was body heat, if it was my pitta constitution as Ayurveda describes it. So we tried cooling foods, cooling treatments, cooling everything.

We also went to God. Every temple we knew, every ritual we could think of. Poojas, fasts, donations. We went to mosques and churches too, even though it was not our religion, to remove evil eyes, to clear negative energy, to ask whoever was listening to please make this stop. There were exorcism like rituals at the mosque, where they try to remove evil energy or a negative gaze placed on you. We did that too. I cannot imagine the amount of pain my parents carried through those years. And I carried my own quiet guilt: how much I was making them suffer, how much money I was making them spend, how much of their lives was being shaped by my body.

Nothing worked. Or rather, things would work, until they didn't. Stop the medication, and it would return.

I remember the moment I broke down at a naturopathy centre. The kind of place where people go to heal quietly, away from the world. I looked at my parents and I said: you know how much pain I am in, and you want to leave me here? That was the first time I truly collapsed under the weight of it all. We left. But the search continued.

University, and the loneliness nobody saw

When I started university in 2015, I looked like any other student. Studious, organised, put together. Inside, I was disintegrating.

The lesions were unpredictable. Large. They would break without warning, and when they did, there would be blood and pus. I lived in constant fear. What if I was sitting next to someone and it broke? What if they noticed? What if they could smell it? What if they thought I was disgusting? What if they thought they might catch something?

I am a deeply sensitive person. Open wounds make my body physically react. The idea of someone seeing mine, metaphorically or literally, felt unsurvivable.

So I disappeared inside myself. For five years of university, I was present in body and absent in every other way. I zoned out in lectures. I kept everyone at a distance. I never told a single close friend what I was going through. Not one.

The relationship I chose because it was safe

In 2016, I met someone online. We were in a relationship for six years. In all that time, I never met him in person. Not once.

Looking back, I understand why I chose that. He couldn't see me. He couldn't find out. I didn't have to explain the lesions, the scars, the fear. A long distance relationship was the safest kind of relationship I could imagine, because real, physical intimacy felt like something that could destroy me.

The relationship was toxic. Deeply so. He was unfaithful. The dynamic was exhausting and unequal. I prayed for it, fasted for it, helped him with everything I could to make it work. And somewhere underneath all of that, I think I also welcomed the distraction. When you are consumed by relationship problems, you don't have to sit with the pain in your own body. You have somewhere else to put it.

I never told him about the HS. Not once in six years.

The lowest point

There came a point where I genuinely felt like I was a burden. I say this now from the other side of it, so please hear the hope in it.

My parents were spending money on treatments. They were worried, frustrated, exhausted. And the thought came, quiet and terrible: it would be easier if I wasn't here.

I have been suicidal. I am saying that plainly because I think there are people reading this who have been there too. Who need to know that someone who looked like me, functional, achieving, holding it together on the outside, was also standing at that edge.

In India, marriage conversations begin early. By twenty three or twenty four, the topic arrives. Every time my parents brought it up, I had a meltdown. What if he finds out after we marry? What if he tells everyone? What if our children inherit this? What if he sees the scars and leaves? I could not imagine being known that fully by another person. I had decided, quietly, that I would never marry. That I might never have children.

I also started to wonder, and this is a painful thing to admit, whether my parents wanted me to get better for me, or because they were worried no one would marry me if I wasn't well. It's a thought I carried for years. A thought that only started to dissolve much later.

Around 2020 to 2021, we finally had a name. Hidradenitis Suppurativa. I had come across it myself, searching online one day, watching a video, something clicking into place. I went to the doctor and asked: could this be it? It was.

Having a name changed something. Not everything. But something.