The Skin I Lived In

Hello, my dear sensitive reader,

This post lands in your inbox as a two-part story. This piece is the first part. What you’re about to read is my personal experience of living with a visible chronic skin condition that followed me through adolescence and into adulthood. I’m sharing it openly this time, without a paywall. Years ago, while I was lying comfortably on a treatment table, wrapped in warmth, my holistic cosmetician said something that stayed with me and supported my decision to write: that by sharing my own story, I could help other people living with similar conditions.

In the second part, I’ll explore what changed beneath the surface and how my skin became healthy again, despite the condition being considered incurable. For now, this is the story as it was lived.

When It Began

From around the same age when my chronic neck pain started (around 13–14, maybe a little earlier), my skin on my body also started to become extremely dry. A dermatologist told me it was ichthyosis. It’s a rather specifically “drawn” skin pattern, a kind of texture you can recognize.

Ichthyosis vulgaris: it often appears during childhood, causes dry, scaly skin especially on the trunk, arms, and legs, and is caused by genetic mutations that affect normal skin function, specifically the process of forming and shedding dead skin cells. Most forms of ichthyosis are hereditary. It is a chronic condition that cannot be fully cured, but its symptoms can be alleviated.

Mine showed up at the beginning of puberty. The doctor immediately asked who else in the family had it or had it too. Of course, nobody. At most someone had dry legs, but nobody had a clearly scaly, very visible, relatively large part of the body affected. On top of that, the extreme dryness and scaliness moved around my body. So if someone else in our family had it, it would definitely not have been something you could miss.

Living Inside It

For me, this condition meant a frequent feeling of tightness in the skin. It was very noticeable when the worst “centers” were right on my back. A simple action like putting on shoes would stretch my back uncomfortably, and it would feel itchy, or simply like my skin was smaller than it should be. On my shins the pattern was the strongest and almost constant, so if I wanted to wear a skirt or shorts, my legs literally looked like they were covered in fish scales. At home I often passed time by peeling these scales off. Of course, huge amounts of dead skin stayed everywhere, inside clothes, in bed, and in general it increased the dustiness of any space. For a long time I also had visible signs on my arms. My neck and chest were so dry that I couldn’t imagine wearing necklaces or anything similar, because it physically rubbed my skin and made the dryness more noticeable and more unpleasant. For most of my life I couldn’t imagine taking a shower and then not putting on cream. The sensation was intense tightness and it genuinely made movement unpleasant. So I was constantly forced to search for, and keep nearby, creams that would ease the tightness and itching. I was literally dependent on them. Everything got worse in cold months when I had to dress and undress more, and the friction of fabric against my skin made it visibly more scaly again. When I had a chance to go to the sea in summer, it could noticeably “heal” the symptoms, but first it would get worse. Meaning, the top layer of skin had to fully renew itself into a healthier, nicer, more comfortable version. I would say my skin with this condition was much more sensitive than skin is “supposed” to be. And on top of that, add the fact that I am highly sensitive, both to what I feel and to how I look. I was lucky that the scaling didn’t show up on my face or hands. There I “only” had very dry skin that I had to care for specially. But at least I could dress fully, cover myself, and the rest, once creamed, looked normal.

When Medicine Stops at Creams

What’s interesting again is the doctors’ approach. A relatively rare condition comes to them (I know it’s rare because almost everyone was nearly excited that they could see ichthyosis in real life), they see that it physically stigmatizes a girl in adolescence, and the treatment was not covered by health insurance in the countries where I lived. They prescribe a pharmacy cream with questionable ingredients and send me home. A common “recommendation” was also to move to the sea shore.

Adolescence is a period when the body becomes highly visible — to others and to oneself. Developmental psychology shows that during puberty, appearance becomes tightly linked to identity, belonging, and perceived worth. Any visible difference, especially one that cannot be easily hidden or “fixed,” can lead to a heightened sense of exposure. Chronic or visible skin conditions during puberty often carry a quiet but persistent stigma. Even when they are not openly commented on, they can shape how a person moves through the world: how they choose clothing, how comfortable they feel in changing rooms, swimming pools, intimacy, or being looked at. Research and patient reports consistently show that young people with visible skin conditions experience increased self-consciousness, shame, social withdrawal, and hypervigilance about how their bodies are perceived even when peers are not explicitly unkind. What makes skin-related stigma particularly complex is that it sits at the boundary between “medical” and “aesthetic.” The condition may not be severe enough to receive sustained medical attention, yet it is visible enough to affect daily life. This can leave adolescents feeling invalidated: not sick enough to be cared for, but different enough to feel excluded. Over time, many learn to adapt silently rather than ask for support, normalizing discomfort as something to endure. This is especially impactful for highly sensitive individuals, who tend to process social cues, bodily sensations, and emotional responses more deeply. For us, physical discomfort and perceived social exposure are not separate experiences, but layered and mutually reinforcing.

When I describe it like this after so long, I surprise myself that I was even able to form intimate relationships. But nobody got actually scared and ran away.

Next: What Changed Underneath

And about the “incurable” part of this condition in my case: when I was pregnant and had genetic tests because of it (there was a small chance I could have a child with a severe form of ichthyosis), all the doctors kept asking me where my ichthyosis was, and I told them: it left me. :) This condition stayed with me for almost 20 years.

In the next part, I’ll write about what safety actually meant in my body and why the skin was the place where everything showed up first. And most importantly, I want to show you what healed my skin, even though I was told it wouldn’t.

Health Notice

I’m not a doctor, and nothing here is medical advice. I share lived experience for education only. For your health decisions, consult a qualified clinician you trust.