My Alopecia Story

My name is Melanie, I’m 48, and I have Alopecia which means I’m bald. It took me more than 40 years to be strong enough to utter these words to the world.

Alopecia is an autoimmune disease that causes your hair to fall out. My immune system is basically a big bully and it attack my hair follicles. About 147 million people worldwide have or will develop Alopecia areata at some point in their lives. So it’s more common than one might think but why have so many not heard of it. Think about it… because the majority of people- mostly females hide it! Including me.

There are different kinds and I specifically have Alopecia totallis where I have total hair loss just on my head. Alopecia areata is what I started out with where you just get bald patches and others suffer from total hair loss all over their body. I’m fortunate to still have eyelashes and eyebrows, but not fortunate to not have body hair! Go figure. Too bad you can’t pick and choose.

Other than being bald, physically I’m perfectly healthy. So far there’s no cure and I’ve come to accept that and finally am at peace with it. But it has taken me a really long time. Too long. I have to live with it and I have for over 40 years. And I didn’t make peace with it until recently.
I started with bald patches when I was little and continued until I was 23 when it all fell out after an extremely stressful time in my life. It’s not known what the exact cause is but genetics and trauma or stress can be factors. So it’s important to manage your stress everyone!

I got my first wig shortly after it all fell out and hid under it and never talked about it until recently. Not talking about it was the way I wanted it.

When I was diagnosed I knew no one else with it. I had nobody to identify with. I couldn’t hop onto the Internet to find others stories and look at pictures. The only thing I had was that I remember vividly when I was struggling in my 20’s and I saw on the news that Princess Caroline of Monaco had it and they showed pictures of her bald. And I smiled and got butterflies because I thought if a Princess could have it then maybe I’m not a freak.

June 14, 2018 is the first time I told anyone besides my family and a couple of close friends that I was bald. I made a post on Instagram and told the world my story. That’s the day that I finally said “it’s time” and it’s changed my life in more ways than I ever could have imagined. Choosing to be brave finally released my chains.

After I posted, the tears flowed and it was so cathartic. The release was like a tidal wave. 40 years worth.

So what is it like living with Alopecia …

It’s psychologically damaging. I doubted myself every day of my life. With every strand of hair that fell out and didn’t grow back I lost my self esteem. Seeing my own hair in my hands and all over the floor was agonizing, not knowing if it was going to grow back or not. It stripped me of my identity and confidence. I was so lost, so confused and most of all felt so alone with no one to talk to or identify with.

As a girl who wants to look like everyone else and be pretty, what is one thing that you have but take for granted – hair. Beautiful hair is a big thing for girls. And it’s engrained in us almost from the womb. The image of feminine beauty you are shown as a child is a Disney Princess or a Barbie with long hair.

Healthy hair equals attractiveness and femininity and we are bombarded with images of this in the media and we are conditioned to believe it’s the standard of beauty. Hair is central to looking human. Not having it made me feel.. Like a creature from outer space…not beautiful… not normal.. not healthy… not likeable.

Some have said to me “It’s just hair, you’re lucky, you’re healthy” but think about shaving your head completely and knowing it would not grow back. Is it ‘Just hair’ then?

When I was younger, my Alopecia came and went but it always came back and as I got older and more stressed it always got worse. Because of my condition I stood in the back, in the corner, never went to a salon or spa, never got massages, never let people touch my head, had trouble dating and getting close to men, never looked you in the eye, never worked out, never went swimming, had panic attacks in the wind.

I hid it and never talked about it. It was my burden to bear. I didn’t have the strength, support, coping skills or confidence to deal with it. I was embarrassed and ashamed. I had depression, anxiety and yes suicidal thoughts. Until I posted I never uttered a word about it, It was buried. Deep. It was quite literally eating me up inside. Hiding is toxic to your well being.

This was my lifelong obstacle up until recently, but really, I was my own obstacle. I never accepted it which means I never accepted myself.

It’s taken a long time to accept the image of me bald but I also feel like me with my wig. Both are me.

But one is more acceptable in society than the other. One is considered flawed. One would get the question “What’s wrong with her?” So women that have hair loss end up hiding, feeling shame, feeling ugly and insecure.

Why would we want to be perceived as flawed or wrong? Why would I have accepted myself bald when society told me not to.

My friends and family know, love and appreciate both of me but society is not as kind. Society is cruel. Society’s standard of beauty HAS to change.

I’m sorry but SCREW SOCIETY! Let’s stop letting the media tell us what’s beautiful and define it ourselves!

So as I move forward as a woman living with Alopecia, the main thing I’ve taken from this journey and what I’m using going forward is to stop living on auto pilot and start living on purpose and intention.

Intention is conscious patterns of thoughts, energy and action. Through intention I started living my life with more clarity and authenticity. The only limits that I ever had were the ones I placed on myself …. because of hair!!! I missed out on so much living because I told myself I couldn’t! Once you become fearless, life becomes limitless!

When I finally asked myself “does hiding and not showing the real me support the life that I am trying to create?” The answer was always no. And fear was what stood in my way of creating that life.

I saw Alopecia as a weakness and now I’m using it as an opportunity to grow stronger. Since I’ve decided to live my life authentically, I embrace my uniqueness, and I’ve taken some huge steps.

I now don’t wear my wig at home. Oh, the FREEDOM I feel! It’s like taking your bra off after a long day.
I worked out for the first time EVER in MY LIFE with NO WIG. It was surreal to sweat freely from my head!

I went swimming for the first time in over 20 years, to a public pool with no wig! I felt weightless!

I went on a hike without my wig and felt more freedom in those mountains than I’ve ever felt

I walked around my neighborhood with no wig, I went to a fitness retreat with over 200 women in the room and did my first public workout with no wig with people filming it, I went to a hot yoga class with no wig which was a dream come true.

I’ve used my IG page as a place to support and encourage others living with Alopecia. I have a voice and a platform now. I started posting about every new step I took and people started to reach out to me to thank me for inspiring them to be brave and step outside their comfort zone. I found that not only by sharing was I healing but I also found purpose – to help others.

As long as I know who I am and what makes me happy. It doesn’t matter how others see me. I’m still finding my way, I have to take it one step at a time. But Im taking those steps and the first one is the hardest.

Whatever it is that’s holding you back from living authentically big or small, it’s YOUR journey. If it’s an insecurity, it’s personal to you and don’t ever minimize it. It may not be as out there as living with no hair, it can be anything! We all have things that cause us pain, shame, anxiety- whether it be your weight, cellulite, eczema, acne, psoriasis, stretch marks, shyness, public speaking, WHATEVER. YOU ARE BEAUTIFUL, STRONG, TALENTED, CHERISHED, IMPORTANT AND WORTHY AND DON’T LET YOUR THOUGHTS TELL YOU OTHERWISE.