What is it like to have alopecia?

I noticed alopecia in the summer of 2021. It was a warm day in June when I first saw the 'empty space;'. I had just coloured my hair for the first time in over a year, and as I was rubbing the box dye all over my scalp when, I noticed a section that didn’t have hair anymore.

I was embarrassed and ashamed to be seen in public because every time I looked at myself in the mirror, I noticed the smooth hairless patch on my scalp, and I thought that was the first thing people saw in me.

During Covid, my hair got thinner, and I read that stress led to many people losing their hair. I did not believe it until it happened to me.

I struggled with the idea of alopecia as a part of my everyday life. For many people, their hair is a part of their identity. Did it mean that slowly, I would lose it all?

According to WebMD, alopecia areata is an autoimmune disorder that makes your hair fall out in clumps, and the amount of hair loss depends on the individual. Some people lose more hair than others, and sometimes, the hair grows back, and other times, it does not.

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The probability of it being a permanent part of my life shocked me. I was a healthy person who exercised and ate well, so how could this happen to me? Genetically, no woman in my family had alopecia, and none of my friends did either, so I had no one to turn to.

It was impossible to rationalise it. I told myself that it was just hair, but my hair makes me who I am. I did not have much hair to begin with, but I never struggled with this level of hair loss. It affected my self-esteem, and I avoided going out. Covid made it easier because I could hide inside my house.

But I did no’t feel like myself anymore. Our hair is our crowning glory, and there I was, losing my hair and my mind.

How could I hide it from others? Immediately I ordered wigs, but felt silly wearing them. I knew anyone could tell it was not my real hair and that I was trying to hide something. I got bottles of hair fibers that could imitate the look of hair, but I wasn’t fooling anyone. I tried styling my hair to cover it up, but it was always there, clearly visible to the world to be judged.

When Chris Rock made fun of Will Smith’s wife, Jada Pinkett Smith’s shaved head, the slap across Rock’s face took centre stage during the Oscars, alopecia was finally discussed in mainstream media. It was no laughing matter, and I wondered, did people make fun of me behind my back too?

So before anyone said anything, I started to tell people I had alopecia as if it did no’t bother me, but deep inside, it did. I thought if I made a joke about it, it would spare me from other people’s jabs.

It is the uncertainty of the condition that makes it so difficult to handle. I cannot even count the number of things I did for my hair to grow back. Doctor visits, hair products, hair growth oils and supplements.

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I saw a dermatologist, Anisha Joshi, who told me not to worry and alopecia affects many people. She treated me with intralesional steroids and gave me an ointment and said it “might” help, but there are no guarantees.

“Treatments can help induce hair growth, but no treatment has been found to alter the course of the disease. However, certain topical medicine like Minoxidil may help,” she said.

After three months of that shiny, smooth patch on my head, tiny little hairs did grow back. It was not the same as before, it was thinner, but at least I had some hair. Nine months later, some of the hair has grown back, and it sticks out straight because it is much shorter than the rest of my hair. You can still see the scalp more clearly in that area than the rest.

No amount of research and logic comforted me during my experience. Losing my hair affected my idea of who I was, and I did not know how to handle it with grace, especially coming from South Asia where women are admired for their luscious locks. I did not have the strength to shave my head and be proud of it.

If you know someone struggling with alopecia, be kind. You have no idea what they are going through. No one wants to lose their hair, especially not so suddenly that it turns their life upside down and changes their perception of themselves.

When I got alopecia, it took me time to accept it as my new reality. Though I am among those few whose hair did grow back, I fear that one day I will wake up and find another hairless patch staring back at me again.

Anjana Rajbhandary writes this fortnightly Nepali Times column Life Time about mental health, physical health and socio-cultural issues.

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