This is the story of Anoushka and her Alopecia diagnosis.
Tell us a bit about yourself!
I’m 32, and I’m from Wellington, New Zealand. My parents are from India but I was born and raised here, and I’ve lived most of my life in this city, aside from a couple of stints in Melbourne and London.
For most of my working life I’ve been a graphic designer, but now I work for a food rescue not-for-profit. We collect food from retailers that they can’t sell anymore but is still good to eat, and redistribute it to local charities. Food that was otherwise going to be thrown out gets to people who need it, so it works out well for everyone! I manage our volunteers as well as our communications, and I still do some freelance graphic design.
I love music, food and yoga, so in my spare time you can usually find me hunting down stuff to listen to, stuff to cook, or new ways to bend myself into a pretzel.
For those of us who don’t know, what’s Alopecia?
In it’s simplest terms, alopecia is baldness. As I understand it in my case, it’s an auto-immune condition that means the body attacks its own hair follicles, stopping hair growth.
I have alopecia totalis, which means I have no hair on my head. I still have hair on other parts of my body, so it’s not yet alopecia universalis (where all body hair is lost), but the hair does come and go on my arms and legs.
When did you first begin to lose your hair?
I first noticed my hair falling out when I was about 19. It began as alopecia areata, which is small patches of hair loss. It wasn’t great, but I don’t remember being too concerned until the patches started to become larger. Even at that early point I realized that what bothered me most was worrying that people would see the bald patches and feel pity for me.
The first time I felt really scared and upset about it was a couple of years later when I was washing my hair and it started to come out in clumps. I wasn’t left with a lot of hair after that.
Over the years the hair on my head has come and gone, but now I’m completely bald aside from a couple of little tufts.
Is there any way to treat Alopecia?
If there is, I haven’t found it yet! Over the years I’ve tried so many different things – steroid lotions, steroids injected into my scalp, Chinese herbal medicine, homeopathy, experimental drug treatment, Ayurvedic treatment, acupuncture. Often this was more to help my parents feel less powerless over the situation – I think in many ways it’s been more difficult for them than it has been for me.
About four or five years ago I made a conscious decision to stop trying to find a treatment. I think focusing on trying to ‘fix’ it places too much emphasis on something which is only one aspect of my life. Since I stopped seeking treatment I’ve felt a lot more accepting of having alopecia.
Some people with Alopecia wear wigs and false eyelashes, others choose not to. Which camp do you fall into? And do people who don’t wear wigs have opinions about people who do?
The decision to stop looking for a treatment was largely influenced by finding Freedom Hair
– an amazing New Zealand company that makes custom fitted human hair wigs. I’d worn wigs before this, but they were synthetic and nowhere near the same quality as a Freedom wig. It was a life-changer to have a wig that fit my head perfectly (so it stays on in Wellington’s gale force winds!), and that I could feel confident doing anything in – even swimming.
A couple of years ago one of my eyebrows started falling out, which was pretty upsetting. I looked into getting false eyebrows and probably would have done that if my eyebrow hadn’t grown back.
I have huge respect for people who choose not to wear wigs, but I wear one for the same reason that I’ve stopped looking for a treatment – I don’t want to be defined by the fact that I have no hair. I couldn’t walk around without a wig on and not be stared at and constantly asked about it. Also, my head would get super cold!
Are the people in your life aware that you have Alopecia?
I don’t tell people about it unprompted, but if it comes up in conversation I’m happy to talk about it. All of my family and most of my friends know I have alopecia.
Most people have never seen me without my wig on – though I’d show them if they were interested. I don’t wear my wig at home, so the people who see me without it are my boyfriend and my immediate family. A lot of the time I wear a hat around them, but that’s to keep my head warm.
Has your diagnosis affected any other areas of your life?
When I was single I was more self-conscious about it, but I never had to tell anyone I had alopecia and was wearing a wig unless I wanted to. People are usually surprised when I tell them I have alopecia – they may just be being nice, but I don’t think it’s ever been obvious that I was wearing a wig.
I’m not much of a sports player, so that wasn’t a problem. I did used to go to the gym without my wig on though – sweating in a wig is no fun!
Are there any benefits to not having any hair?
My wig hair is WAY better than my actual hair! Though I do spend a bit of time each week styling my wig, it’s pretty great to be able to just put it on in the mornings and head out the door. I never have to worry about bed hair – my boyfriend is way jealous of that.
Thanks so much for sharing your story, Anoushka; you’ve got a fantastic attitude. Do you guys have any questions for her? Have any of your lost your hair?