True Story: I Have Alopecia

Living and experiencing through Alopecia diagnosis
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?
P.S. A few more True Stories you might like: Obamacare saved my life + My twins were born 3 months premature.
photo by janet moore-coll // cc

17 Comments

Jenn

Very interesting! Thanks for sharing. I have a friend who once dated a man with alopecia and he was pretty unbothered by it, so it's very interesting to read a woman's point of view.

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Brittany

Yes thanks for sharing this. My mom had alopecia but hers was not that bad. She was fine with it. I did see an MTV True Life show on people who had it. Love the positive attitude about not having to have bed head! Lucky!

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akshay sharma

Hey I also have alopecia . and i treat it and I got my hair back . in just 4 month .

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Laura

That sounds really tough. Anoushka has a really great attitude about it though and it's certainly nice to hear her story.

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Kate

hahahahahaha "I never have to worry about bedhair"

I love you, you're great. So happy to see you're at peace with it!

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Anonymous

I know a middle-aged, male photographer in my city who has alopecia. Because he is male and middle-aged, I always assumed that he was just a bald man until he brought it up one day in conversation. He then openly shared his experience with it and like Anoushka, was able to crack jokes about it and be really light-hearted. He's even mentored some younger people in the community on living with alopecia. I would imagine that it's easier for a male to live with alopecia than a female, since much of the female appearance is based on hair. However, I give anyone who can be comfortable with who they are a lot of credit. That's not easy to do.

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Virginia

Thanks for sharing your story. I'm a cancer survivor, so for a time during treatment, I was bald, too. I applaud your outlook. These things don't define us – we define them! BTW, here's a link to a great site for head coverings (hats, scarves, wigs, etc). http://www.headcovers.com/

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Anoushka

Thanks for sharing that site Virginia – could come in handy for when it's too hot to wear my wig!

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Carissa Baker

Hi Anoushka,
I’m the mother of a five year old girl who has alopecia. We are about to move to Wellington, NZ. We would love to connect with other Alopecia sufferers, particularly children in the area. This article of yours is several years old, but it’s one of the few I have found! Are you able to help at all?

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Amy

I'm a mid-thirties woman who had alopecia universalis a couple of years ago. Everything fell out over a period of about 4 months – eyebrows, eyelashes, body hair, even nose hair. I completely empathize with Anoushka worrying that people would feel sorry for her. It was very strange to have people assume that I was deathly ill and that I was seen as a constant reminder of one's mortality. It was also really hard on my family and spouse at the time, maybe even harder than it was for me.

I also never thought that I was vain until I lost all of my hair. There was an unfortunate movie out around the same time with a female human-like alien who had no hair, and I was tortured by the idea that I looked like her. I was prepared to never be seen as "pretty," or what you will, again, as long as I wasn't seen as a "freak."

The doctors told me it was never going to come back, but I didn't believe them. I only wore a wig once when I went out to a cheesy nightclub and didn't want to be recognized. Otherwise I just wore hats and scarves. I learned weird things, like how the top of your head sweats first when you eat spicy foods, or that without eyelashes, your eyelids stick to your contact lenses, so you can't wear them easily. I did get shots of cortisone to try to get my eyelashes and eyebrows to grow back, and they were the first things to start growing back. Getting shots in your face is extremely painful, just FYI.

It was hard, I'm not going to lie. I tried to seize the opportunities that were presented. I went as Juice, the mohawked tattooed biker from Sons of Anarchy, for Halloween. I also got two tattoos on my head, the first ones I had ever gotten. One is a constellation, and one is a large Celtic dragon. I love them and now that I have hair again, you can barely see them. I will never forget the kind bartender who told me that I should never grow my hair out, because I was so hot without it.

All of my hair started growing back about a year after it had started falling out. After about two months, I had enough hair to go without a hat. It was crazy. I started seeing a naturopath who ran some genetic tests and we learned that I don't metabolize folic acid correctly, and that can affect hair, skin and nails. I've taken the supplement now for a couple of years, and haven't had any problems. Occasionally stress will result in a few small bald spots to appear, but I haven't been too concerned about them.

So applause to Anoushka, and I completely echo how hard it is but at the same time, it becomes part of you that you don't even think about.

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Anoushka

Hi everyone, and thanks for all your lovely replies!

Amy, that's exactly what I was thinking about people feeling sorry for me – the first thing a lot of people think when they see a bald woman is that she must be incredibly ill. I love your idea of getting tattoos on your head, I'd never thought of that!

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Vanessa @ Mixed Martial Arts and Crafts

I lost all of my hair when I was 25. I didn't have alopecia, I lost it from chemotherapy. It was really hard because on the one hand, I always had a bad relationship with my hair. It's very curly and I've never learned how to take care of it, so I was teased a lot about it. In high school, I got a mohawk (before it was cool) because I was tired of hearing about my hair. (This sort of backfired, of course!) On the other hand, I didn't look or feel like myself. There was nothing empowering about losing it, unlike the mohawk.

I hated wearing my itchy and cheap looking wig. The part kept moving around since I had no idea how to wear it correctly. I ditched it and stuck to wearing my hand made (by me!) wool hats to keep me warm, but mostly I was overheating from hot flashes (yep!) That felt so much more powerful, except for the dumb teenagers (I try to avoid groups of 15 year old girls, even today) pointing out that my hair was gone.

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TM

Thank you for sharing your story! I also have alopecia areata and mine started to fall out when I was about 8 years old. It started with just the sides and my mom would put a headband around it, until the spots started to grow bigger and I eventually lost all the hair on my head. I wore wigs in elementary school and my first year of middle school (and you can imagine the amount of times it came off in gym class). Honestly, while I still had those feelings of "why me", "why can't I be normal like the other girls", I guess I just kind of went on with life as normal. I think kids are so much more resilient than we give them credit for. My parents and loved ones didn't make a big deal about it, so I didn't either. It was just one part of my life. I'm 28 now and the sides of my hair never grew back even after some of the treatments you mentioned, but I'm able to wear my hair down so that's it's covered. I still lose spots here and there that drive me crazy, but I just cry for a bit and then figure out how to cover it up, lol. This has been a long journey and who knows what surprises my hair will bring me next, lol.

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marisaporter.com

I have alopecia and have been through the gamut. I am getting ready to do an update on my story on my blog. I miss my wigs, but my hair is finally getting to the place where I don't miss them as much. I love Lipogaine and Hair Repair. I love wigs and microlinking, too! 🙂 If anyone's interested, check out my blog and search for alopecia.

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Rita Henry

How many women have tried progesterone cream on their head……the fact that all old ladies seem to have such thin hair and visible scalp makes me think that “lost female hormones” have to play some part?????

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