My Hidradenitis Suppurativa Journey

I am twenty-eight years old. I have two masters degrees. I have worked in corporate for a global MNC. I built a business in India and closed it on my own terms. I am now building another one in the UK. From the outside, it looks like a life that was always moving forward.

But there is a part of my story I have never shared publicly. Until now.

This is that story.

When it began

I was seventeen when it started.

I didn't know what it was. Nobody did. My parents had never seen anything like it. The doctors called it acne and gave me medicines that didn't work. 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.

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

The years of searching

My parents are the kind of people who would move mountains for their child. And they tried to. We tried everything: 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 that treated addiction and chronic illness, trying fourteen-day cleanses, trying anything.

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.

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. It was 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. I was studious, organised, put together. Inside, I was disintegrating.

The lesions were unpredictable. They were 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 were afraid they might catch something?

I am a deeply sensitive person. I have always been. Open wounds make me physically shake. 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 people at a careful distance. I never told a single close friend what I was going through. Not one.

There was also something that happened before all of this, something I carry quietly. I experienced sexual molestation growing up. Trauma lives in the body. I believe now, looking back, that what I went through found a way to surface, and the skin, that most visible and vulnerable of organs, became its canvas.

And then there was a moment in my ninth standard when someone close to me said something in anger. Words about my appearance, that lodged somewhere deep and stayed there. I had never been someone who worried much about how I looked. After that, I was. And then HS arrived, and those words felt like a prophecy I was being punished with.

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 intimacy, 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 your illness. You have somewhere else to put the pain.

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 trying to find answers. 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, and 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.

The diagnosis, and the turning point

Around 2020 to 2021, we finally had a name. Hidradenitis Suppurativa. I had actually 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.

And then the real turning point came, though it didn't arrive through medicine. It arrived through a book.

I had been desperately trying to save my toxic relationship, praying, manifesting, searching for anything that might help. In that search, I came across Louise Hay's You Can Heal Your Life. I started with her meditations. Then I read the book. Then I kept reading, about trauma, about the body, about thoughts and beliefs and the stories we carry about ourselves.

The inner work became the medicine that outer treatments never fully were.

I started to understand the connection between mental health and physical health. HS and emotional state feed each other. Stress triggers flares, flares destroy confidence, broken confidence creates more stress. It is a circle. Breaking it required working from the inside out.

I began to heal. Slowly, non-linearly, imperfectly. The topical medication helped. My routine and the way I started caring for my body helped. But the mental work, clearing the trauma and rewriting the story I told about myself, that was the turning point.

Where I am now

I am twenty-eight. I live in the UK. I have two masters degrees. I am building a business.

The HS is largely in remission. Rarely, if I wear very tight clothing or my body is under stress, something might surface. But the nine-year battle, the pain, the fear, the hiding, is behind me.

In its place came something unexpected: hives. Cold urticaria, a reaction to wind and cold. In the UK, where the weather is rarely warm and always unpredictable, this is its own daily negotiation. Fifteen minutes outside on a windy day and my skin reacts. I carry antihistamines. I cover up. I manage. I wonder sometimes if it is connected to the years of medication, to the body finding new ways to respond. I don't have a definitive answer. What I have is a way of living with it.

And a phrase I say to myself when it feels unfair, because sometimes it does feel unfair, watching people run in the rain, wear what they want, not think twice about the wind:

I am meant for a comfortable life.

Not as a denial of what I have been through, but as a reframe. My body requires care, softness, warmth, intention. Maybe that is not a limitation. Maybe that is just the shape of my life.

What I know now about love, intimacy, and being known

I thought I would never let anyone close enough to see me fully. I thought the scars, physical and otherwise, made me unlovable, or at least unshowable.

I was wrong.

Dating, slowly and consciously, taught me something I could not have learned any other way: people are kinder than the voice in your head. The critical narrator I had lived with for years, the one who was sure everyone would be disgusted, would leave, would tell, was not telling the truth. Real people, the right people, show up with care.

I no longer have the fear around physical intimacy that I once did. I no longer avoid closeness. I made a conscious decision to choose what was best for me in relationships, in friendships, in all of it, and things began to shift.

I also thought I would never have children. I was afraid of passing this on, of causing someone else to live through what I lived through.

I have changed my mind.

When I look at my artwork, the colour, the love in every piece, I feel something that can only be described as wanting to create life. If my children face something like this, they will have something I did not: a mother who has been there. Who knows. Who will not panic or search blindly or feel helpless. Who will sit with them in it and say: I know this. And I know you will come through it.

Why I am here

I tried to build a community once before, an Instagram page, years ago, when the HS was still raw and I was still in the thick of it. It became too emotionally overwhelming. I closed it. I was not ready.

I am ready now.

I am creating this space, this blog and this Instagram page, because when I was seventeen and scared and had no name for what was happening to me, I searched the internet and found almost nothing. Especially not in India. Especially not from someone who looked like me, who came from where I came from.

If you are reading this from India, from the UK, from anywhere, and you have just been diagnosed, or you are still searching for a diagnosis, or you are in the dark and the pain and the shame of it, I want you to know:

You are not alone.

It does not have to stay this way.

You are not ugly. You are not broken. You are not a burden.

You are someone going through something extraordinarily hard, and you deserve support, information, and the knowledge that someone else has walked this road and come out the other side.

That someone is me.

Welcome.