Reclaiming What It Means And Looks Like To Live With Alopecia: Four Women Share Their Stories

Alopecia

Sparingly talked about till it became the subject of Chris Rock’s joke, Alopecia is a condition that deserves to be seen as more than just the foundation of an Oscar meme. “Simply put, Alopecia is hair loss. It can be of many types, the most common being alopecia areata (an autoimmune disorder that usually results in patchy hair loss) and androgenetic alopecia (male or female pattern baldness),” says Dr Manasi Shirolikar, Consultant Dermatologist and Founder of Online Consulting Brand drmanasiskin.com. Jada Smith broke her silence on the Academy Awards slap last week on her Facebook Watch show Red Table Talk with an episode dedicated to this condition. “147 million people are living with Alopecia, including me. There’s so much shame around having alopecia and when you go bald, and you don’t have a choice” she says.

We reached out to four Indian women living with this condition to share their journey to feeling confident in their own skin and redefining societal beauty standards:

Living With Alopecia

Supriya Surender – “Beauty is not limited to a cookie-cutter image”

Alopecia

“During the Summer of 2013 I noticed a bald spot located behind my ear. A trip to the dermatologist confirmed the spot was caused by Alopecia Areata. For two years the bald spots came and went but always remained localized towards the nape of my neck. May 2015 is when everything changed. I had grown up with very thick Indian hair and was used to shedding, but that May I noticed I was shedding SIGNIFICANTLY more hair at an alarming rate. My dermatologist told me I was experiencing an Alopecia Areata flare-up’, meaning my immune system had gone off the rails and was staging a massive attack on my hair follicles. We tried experimental medications, but nothing worked. In a matter of three fast months, my hair was gone. I was a bald woman, and I was devastated.”

“My relationship with Alopecia Areata was tumultuous and it took me years to make peace with a disease that caused me so much pain. During the fall of 2017, I shared my hair loss story in a social media post with my close friends and family. While it was scary to stop hiding behind my secret, it was freeing. Reclaiming my power and owning my story was the first step. Now I am at a point where my pain has transformed into purpose and I have found my peace. I created my blog & social media platform, Baldieboo to share my story and connect with other hair loss warriors around the world. They gave me the courage to do things I had completely written off after becoming a bald woman. Date, ride roller coasters, go out in public WITHOUT a wig, go to the office without a wig, and so much more.”

“I truly believe being a bald woman needs to be rebranded. Society has taught us that bald equals sick, and Hollywood has taught us that bald equals the monster, the villain, the witch. Why? All it takes is a quick social media search to see that bald is none of the above. Look at the women who are rocking bald. They are freaking gorgeous!”

Suhani Parikh – “ My definition of beauty has evolved over time. When I look at someone confident in their skin or someone who is kind to others, or humble, or full of purpose, I find them to be beautiful.” 

Alopecia

“I was diagnosed with alopecia at the age of four, however, it only presented as small dime-size bald patches that hid among my thick Indian hair. It was around the age of eleven that I started to lose the hair right at the top of my head and that is when I couldn’t hide or hide from my condition anymore. Alopecia runs in my family and since my dad and aunt were already living with the condition, we all knew what was bound to happen. That knowledge, of course, didn’t make it any easier losing my hair as a teenage girl. For the first time in my life, I became my own worst critic and I remember looking up at the posters of Bollywood actresses taped up to the wall of my bedroom, wishing that I had hair like theirs.”

“I distinctly recall doing my hair and checking to make sure that no little patches were visible wherever my hair parted. This memory later served as the inspiration behind my first children’s book “Shreya’s Very Own Style”. The book is my entire experience living with alopecia and my self-realization in 32 pages. When I thought about focusing on my writing a few years ago, I had initially set out to write a novel. But being knee-deep in raising my 18-month-old twins, all I could think of were ideas for children’s books. When I looked into what picture books were available, I found that not more than a couple of self-published books spoke to my own experience of patchy hair loss. So, I set out to share it. I ended up creating what I hope to be a powerful resource for kids and families. “Shreya’s Very Own Style” doesn’t focus on the external loss of hair or the bullying one might face, but rather on what one goes through internally. My hope is that it becomes a resource for kids living with alopecia as well as a tool to cultivate empathy.”

“Over time I have come to terms with having alopecia and am appreciative of the perspective on beauty it has lent me. I love the clarity with which I am able to look at myself, those around me and the world. I also prefer to call alopecia a condition rather than a disease, since I know that it cannot stop me from doing anything I want in my life. After decades of hiding behind a wig, I’m finally not afraid of the comments or questions or what people might think if they see me without my wig on. I’ve found strength and confidence that I hope my children see and embrace for themselves.”

Monisha Varadan – “Beauty is accepting who you truly are.”

Alopecia

“My hair loss started around 2010. I was at INSEAD, which is one of the best business schools in the world and therefore the pressure levels were pretty high. At that point my hair loss wasn’t too bad because my hair is just naturally thick, so you can’t tell and I blamed it on the stress. But eventually, the patches started growing from coin size to bigger and bigger. I knew it was Alopecia Areata at that point. By 2014, it had become about 50% of my scalp so I was barely able to cover it. My journey became fascinating after I got married in 2014 because every time I got pregnant, my body just recuperated completely and all my hair would grow back. This would last from the third month of pregnancy to the ninth month of pregnancy, and maybe about four or five months after that and then the entire thing would fall off. My endocrinologist didn’t have any answers as to why that might be happening.”

“I found mainstream medicine to be very disappointing in terms of how they tackled Alopecia because the only solution they gave me was to inject steroids into my scalp, which I didn’t want to do because it was quite painful and there are side effects like you might grow a moustache. There are also some very long term side effects of steroids, which I really don’t like. In 2018, April, I got my first wig. It’s been four years now and I’ve been okay with the wig a bit and with the fact that the hair drops and comes back. But this time it has been the worst because now I have Alopecia Universalis which means I’ve even lost my eyebrows and I don’t have any hair on my body. In some ways, great, (laughs) but in some ways, quite disturbing. It is challenging to accept your physical appearance in a world where there’s a certain expectation of beauty.”

“It hasn’t been easy and I constantly question what this condition means to me. I can’t conceal it this time, because I don’t have eyebrows. It’s quite clear that I don’t have any hair of my own. so might as well own it.”

Paromita Gupta – “I feel comfortable being bald. I do. It’s not a lie. In fact, it has helped shaped the person I am today and I’m super proud of myself. “

Alopecia

“I was 10 years old when I started experiencing hair fall in ridiculous amounts. Within a week, I lost all of my hair. Initially, a few general physicians ascribed my hair fall to after-effects of typhoid or to some fungal infection. My parents sought medical treatments across fields – allopathy, homoeopathy and even Ayurveda. I remember having to rub some onion paste on my scalp. It was ridiculous. I went around stinking like a meat marinade. Finally, a dermatologist in Siliguri was able to diagnose the issue and ascribed the cause to multiple reasons – stress, thyroid, anaemia and others.” 

“At first, when people made fun of my looks, I used to feel bad. That feeling, in time, developed into something else – I began to join in their laughs. What I thought to be a bold and brave act as a kid turned out to be more damaging. Because every time I laughed with them, I encouraged and supported the act of being made fun of, and betrayed my self-esteem. We’re conditioned to believe that people should appear in a certain way. I also had to break out of the stereotype that I was conditioned to believe – that bald women are not beautiful or worth considering someone you’d ask out. I started taking pride in the way I looked. Of course, this didn’t happen overnight. It took me daily affirmations to become aware of my thoughts when they would stray towards the dark abyss of feeling worthless, all because I had no hair. I started actively participating in Human Library, Bangalore chapter events. It was a great opportunity for someone grappling with issues like me to find a forum to voice our experiences.”

“I’ve recently been diagnosed with vitiligo. Say hello to the poster-child-of-all-dermatological-problems But this is also a process of loving your body no matter what. It is challenging and difficult to keep yourself positive when you’re faced with such situations but what you make of it is what matters. Someone recently told me that you could be India’s Winnie Harlow! I could also be India’s Paromita Gupta.”

Ask The Experts 

Are some people at a greater risk of developing Alopecia?

“Yes, if you have a family history of balding then you can get androgenic alopecia in males and in women, hypothyroidism or hormonal imbalances, stress, and illnesses play a major causative role,” says Dr Manjot Marwah, an Award-winning Celebrity Dermatologist, and Hair Transplant Surgeon. Consultant & Director at Dr Manjot’s Clinic. 

What are the treatments available for Alopecia?

“There are multiple treatments available nowadays to control hair loss although all alopecias are not curable. There is Platelet Rich Plasma (PRP), mesotherapy, stem cell and regenerative medicinal options available and hair transplant surgery is the most rewarding and satisfying option out of all of these” says Dr Manjot. 

“Supplements in the form of hair vitamins and oral medications such as minoxidil and finasteride are some of the common ones. Topical serums containing peptides, minoxidil and finasteride are also an option. Minoxidil is the most promising medication and has the most data backing behind it as well. When used as directed, minoxidil can stimulate hair growth and prevent further hair loss. Hair loss can be staved off with treatment, but as and when the treatment is stopped, hair loss can return. The treatments (especially the peptide serums, minoxidil and oral supplements) are safe to use lifelong, but always speak to your dermatologist first, before experimenting.” adds Dr Manasi. 

If you liked this, we also did an article on LGBTQ+ organisations in India

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