"I'd been overweight most of my life, and my long hair was the one saving grace I relied on"

“Ae ma, tak pore ja che (Oh yuck, you’re balding)”, Rukmini Guha’s then boyfriend joked one day. She was dumbfounded. “How do I explain to this person that this is not the right way to ask? Why can’t people take a kinder approach?” she had thought to herself. Her feelings were no different when she saw the now-infamous joke Chris Rock made at the Oscars. When she saw the way Jada Pinkett-Smith rolled her eyes, as if she’d heard this kind of comment about her alopecia more times than she could count, Guha felt seen. “She didn’t say anything. She didn’t go and slap anyone because what do you do? That is an emotion I’ve felt too. Neither I nor Jada could have anything to say to someone with that kind of lack of empathy. We could only wish they had a little more awareness and a little less ignorance.”

The Oscars debacle brought a bittersweet reckoning for people with alopecia. The slap that was “heard around the world” — that triggered something inside all of us as this writer puts it — overshadowed the conversation around the condition. But what exactly is alopecia? According to dermatologist Anchal Panth, it’s a medical term used for hair loss. There are mainly two types: scarring alopecia, a rare form that results in the permanent loss of roots with no chance of regaining hair; and non-scarring alopecia, which entails a temporary loss of hair roots due to inflammation.

While Pinkett-Smith has alopecia areata, an autoimmune non-scarring alopecia that can cause hair loss on the scalp, face, and other parts of the body, Guha has androgenetic alopecia — also an autoimmune type of non-scarring alopecia. In this case, the hair roots are not lost, but are so small in size that the hair is not visible anymore. Panth says, “The thinning occurs within decades and not in months. There are fewer chances of complete recovery of hair density. We can only slow the progression of hair loss.”

Dr Rinky Kapoor, consultant dermatologist, The Esthetic Clinics, adds that pattern hair loss or androgenetic alopecia is the most common cause of hair loss among Indian women. “Research is still on to list out the causes of androgenetic alopecia. Some known causes include genetics, PCOS, hormonal imbalances, and the main culprit, dihydrotestosterone (DHT) androgen, which causes hair follicles to shrink and eventually stop producing hair,” Kapoor adds.

Guha was in 10th grade when she first noticed her hair thinning. But the situation came to a head when she was in university, and hair stopped growing back in the spots it had fallen out. Thus began Guha’s long journey of grief, understanding, and acceptance.

“I’m not scared of alopecia but how society looks at women with alopecia”

You know how everyone in high school loves experimenting with their hair? Back in class 10, the obsession with hair straightening was at its peak. That’s when I, then my mother, first noticed how thin my hair was becoming. In 2010, when I went to university, I started seeing scanty areas. I’d been aware of them, but when my friends and even people I went out on dates with started pointing them out, it became even more real. My sunehre kaale baal was falling faster than the monsoon rain.

I tried everything for the next eight years — getting hair treatments from salons, topical creams, vitamin supplements, homoeopathy, and even laser, but it was like my hair had decided to become as ziddi as a toddler refusing to eat fruit.

It took me eight years to reach the root cause, and not for lack of trying. I had androgenetic alopecia, the doctor told me point-blank, without any preamble about my mental or emotional health. As if the death sentence had been read and up to the gallows I had to go.

I had been overweight most of my life, and my long, black hair had been the one saving grace I’d always relied on. So it was bizarre coming to terms with having less hair than what I had when I was a toddler. As an Indian woman, long hair was simply supposed to be a part of who I was.

I hated socialising with anyone at this point because people had aligned themselves into two groups. One would callously prod me about my hair as they told me of all the ways I could make it grow back. The other took it upon themselves to teach me that losing my hair was no big thing. Who was going to tell them that every time I got a little used to seeing my gradually thinning hair in the mirror, it would thin some more and my resolve would crumble once again?

There is no study that proves that alopecia can be medically cured once the hair follicle is dead. Hair extensions do not work for those with alopecia because they don’t have hair to clip it onto. Newer forms of extensions called “toppers” that cover the entire head might work for some people, but they are likely to claw onto and hurt weak, fine hair as it does for me. So cosmetic alternatives are still limited. Needless to say, wigs can feel very uncomfortable to wear in Indian weather.

It has taken me a long time and some therapy to finally come to terms with my hair and its reality. This is why I have only now opened up to some of my friends about having alopecia. Even when I’ve told them that there is no cure to this and I am at peace with that, they try and help. It’s difficult to tell a loved one that there is nothing they can do. Or to tell them to be more empathetic because trying to help in a situation where you have no information is pointless.

My parents are still in denial. My otherwise supportive mother has stopped telling me to use this oil or that, which could make my hair grow back but there’s hardly any empathy about my alopecia, let alone any conversation. It has been brushed under the carpet as any South Asian family worth their salt would do.

Yet what keeps me up at night isn’t the fact that I have alopecia, or that I might end up losing all my hair one day. It’s how society looks at women with alopecia and how little awareness there is around it. I rarely look forward to social events because of the comments people might make about my hair — as they do — simply out of ignorance.

When I was still struggling with my hair loss, there was nobody I could talk to who would understand. No support groups for women with alopecia, no peers. Absolutely nothing. Only once in my life have I talked to an actual person with alopecia. You know how you can look at a woman in public when you’re in trouble, and just her gaze tells you she has your back? That’s how I felt when I first encountered a friend of a friend who had alopecia as well. It was surreal. Although we were both at different stages of our journey, it still helped to know there was someone out there who felt the pain I did on a daily basis.

Going to therapy and doing yoga and meditation have helped me fill this lacuna by pushing me to be the support I was desperately seeking in the world. I trust that any loss, even hair loss, can make one stronger. I hope one day to find a wig that is weather-friendly for India so I can be my own version of Moira Rose from Schitt’s Creek. Or perhaps I’ll go bald like Jada Pinkett-Smith. Healing is a process, and never a linear one at that. So the day I can look in the mirror with confidence, I hope to use it to build a support group for women in India with alopecia. To help them feel seen and a little less alone. So that they know they don’t need permission to be who they want to be, bald or not.