Baring All: The Reality of Growing Up With Alopecia

After the dramatic Oscars ceremony in which a Chris Rock joke about Jada Pinkett Smith’s hair loss led to an on-stage viral confrontation, the autoimmune disorder is much more misunderstood. tend to return. Below, review one writer’s powerful account of her own battle with the condition from British Vogue March 2019.

Last summer, I decided to shave my head. I’m 25 years old, and it changed my life. One afternoon, sitting on the floor of a close friend’s bedroom with my knees in my hands, I bit my lip as if I was about to experience excruciating pain. I was completely skeptical when my friend took the trimmer over my head, but when I looked at my reflection in the mirror, I saw my true self looking back. The next day, I woke up with a feeling of lightness that I can’t remember experiencing. Walking through the park feeling the wind blowing over my head is a feeling I will never forget.

However, the beginning of my story, about how I developed alopecia areata, is very vague, held back by years of denial. I remember this: I was 8 years old and my mother was washing my silky hair in the bathtub when she noticed a large amount of hair was gone. I can recall the panic on her face and the shock in her voice. No one can explain exactly why I started losing my hair at a very young age, but the trauma of it only accelerated the process. By the age of 10, my condition had progressed to generalized alopecia areata and I had very little hair left, not only on my head but on my entire body.
Up until this point, my appearance had never been a cause for concern: growing up in rural Suffolk, I had no interest in anything other than climbing trees and painting — I was completely naive to it. its visual identity and the power it holds. However, suddenly, my appearance is everything. That’s all that has identified me with others. People are either ashamed and pitiful, or cruel. Strangers assumed I had cancer, which made me feel guilty, because I felt that the suffering was not my own.

Hair loss affects around two out of every 1,000 people in the UK. This is an autoimmune disorder thought to be related to inflammation in the body and occurs when the immune system attacks the hair follicles, which can cause episodes of hair loss that range from patches to the entire body. body. There is no evidence of a cure and no way to predict hair loss. The only treatment the dermatologist offered me was steroids, which was a temporary option and was vehemently opposed by my loving parents.

I was so scared and didn’t know what to do. At first, I started wearing a headscarf to school, but my teacher forbade it, saying it made me too different from other students: they wouldn’t let someone dye their hair, so why should I? can wear a headscarf? Ashamed of my appearance, I felt like I had no choice but to wear a wig. To get one, my mom and I had to go to a cancer store where you had to ring the doorbell to get in and people spoke in hushed voices. I opted for a short bob with my natural color, hoping that it would be more deceptive than the long, bouncy hair I’ve always wanted. It was a very unsettling experience and at the age of 10 it made me extremely uncomfortable. My mom told me I looked like Twiggy to help me feel better. In fact, even that word — “wig” — made me wince: it felt so old-fashioned and ungainly. It still breaks my heart to say it today.

Looking back, I realize that I’m too young now to understand that hair loss is incredibly personal; that it was a loss that I needed to grieve. As I’ve gotten older, I’ve put so much effort into suppressing my emotions that when it’s tough, life feels unbelievably overwhelming. In a world where visual beauty is often equated with happiness and success, I came to believe that I was useless. As a teenager, I was judged every day – both myself and others. I refuse intimacy and refuse honest conversations about what’s going on in my life. I challenged that I didn’t need relationships, that I just needed myself. It’s easier than feeling rejected. I developed obsessive behaviors to help me cope and work extremely hard at school, motivated by the belief that if I can’t be as pretty as the people around me, then at least I can’t. can be successful.
Of course, now I see what my obsessive work ethic is: another form of behavioral control. But the harder I work, the better my results, and the more ambitious I am.