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Living With Alopecia Areata

‘You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws’

Thank you Lisa, for teaching us that there is life and happiness after hair!

Read her inspiring story about Living with Alopecia Areata

Ever since I was a little girl the first thing anyone ever noticed about me was my hair. My exceptionally thick, chestnut brown hair.

My early childhood was not a particularly easy one and I tended to be a shy and withdrawn girl and my hair was a handy shield – I never really had to say anything as everyone made a bee line for my hair. As I grew older life seemed to revolve around all my thick hair, the washing of it, the care of it, it was always about my hair.

I am now 43 years old and all that hair is gone.

Where did it all go?

When I was about 33 years old I developed a condition called Alopecia Areata (AA). AA is an auto immune disorder causing your body to no longer recognise hair as part of it, something that must be attacked and destroyed.

In 2005 the first of many typical AA patches developed above my right ear. At the time I put it down to stress and thought no more of it. During the course of 2006 a similar patch developed above my left ear. Again I thought it to be due to stress. The hair along the nape of my neck started to go patchy and recede.

I approached a general practitioner who insisted there was nothing wrong – it’s just stress. Nevertheless, I went for one blood test after another – all the results came back as normal. One evening I discovered a distinct round bald patch on the top of my head. I asked my step dad to look and he confirmed the patch was there. I went numb inside – I’m going bald. I climbed into bed and pulled the duvet over me – I wanted the world to swallow me up.

My mom, an ever practical soul, hauled out a magazine article on iron deficiencies and hair loss and the next day I went for iron deficiency blood tests. The tests came back normal.

What was wrong with me – why could I find no answers. I scoured the internet for information and came across people with bald patches just like mine! Finally I had some idea of what could be wrong with me: Alopecia Areata.

In the meantime my hair started to shed like mad – it was a bit like a sock being pulled up as it disappeared, it started receding back from my forehead quite dramatically.

The very last time I ever blow dried my hair was the deciding factor that it was time to consider a wig. As I dried it, running a brush through it, I could feel the individual hairs popping out until I sat with a plastic shopping bag full of hair that had come out.

I found a wig supplier in my home city and arranged to go and see the lady running the shop that weekend. Armed with a photograph of me as a little girl to give an idea of what my natural colouring was, off I went.

She was a godsend – she had been in the wig trade for many years and understood exactly how traumatic hair loss can be. She wisely recommended I go for a style something similar to my own style in order to adjust psychologically. She warned that it was going to be difficult at first, that even though I may like what I see in the mirror, it would take time to accept it was me.

The decision of getting a wig was not an easy one. It initially filled me with horror. I was convinced I would look like I had a dead ferret perched on my head…

However, when I went with my folks to fetch my first wig and that kind lady showed me how to fit it, I was delighted. No more worrying are all the patches covered, what if the wind blows and they are revealed?

I decided to buzz cut what was left of my hair off, it was long but shedding and I saw no point keeping that stringy mess stuffed uncomfortably under the wig.

I did my best to keep light hearted about it, particularly for my mom’s sake – I know this was hard on her. My step dad buzzed it all off for me and somehow we all managed to have a good laugh. It was quite incredible as we discovered there were even more bald patches than we thought were already there! I looked like I had mange!

I was thrilled with my new hair. Then came the period of adjustment. If anyone so much as glanced at me I was convinced they knew I was wearing a wig and were laughing. I felt anger, a deep hot, burning anger, how dare anyone judge or laugh, they had no idea what I was going through.

For the next year or two I pretty much hid behind my wig. I stuck to that same style. I remained desperate for my hair to grow back – I tried lotions and potions of all kinds, I underwent a hair trace mineral analysis of what remained of my hair, I spent months on an extremely strict diet of brown rice, vegetables and nutritional supplements. Although I felt fantastic health wise, my hair did not grow back.

In 2010 I noticed that the odd remaining patches of my hair were becoming more and more sparse and that suddenly all my body hair was disappearing! My eyebrows were vanishing! I visited another general practitioner who thankfully had a bit more insight and confirmed it was Alopecia Areata the auto immune disorder and that the only possible treatment was cortisone to suppress my immune system. I asked him to refer me to a dermatologist just to have a final confirmation for my own peace of mind.

It was a shock to me. It was the first time I had had it confirmed that it is either cortisone or live with it. I got back to the office in a flood of tears – my beautiful hair was not coming back.

A week later I visited the dermatologist I had been referred to – an older gentleman with many years of experience and no stranger to Alopecia Areata. We had the most wonderful long discussion; do I really want to expose myself to months of cortisone and its horrid side effects when in all likelihood it will not be successful?

I had finally reached a turning point: no. No more blood tests, no more trying this lotion or that potion. No more tears over what is no longer there.

When I stepped out of his consulting room my mom looked at me with a hopeful face and her pretty blue eyes filled with tears when I quietly shook my head – no there is nothing that can be done.

I firmly reassured her, and myself, that this is not life threatening, it will not kill me, it’s just hair.

I decided too it was time to ditch the old look and started on an adventure of a new wig, a lovely short bob with a monofilament front (looks just like hairs growing out of a scalp – quite magical!). It was time to start living again and make the most of it.

As my eyebrows disappeared I went with a friend to a lady who specialises in permanent make up to have a pair of eyebrows tattooed. Yes it was a bit painful – but oh what lovely classy brows I finally had!

When my eyelashes fell out I cried, oh how I cried, not my lovely long lashes too. However, I discovered that wearing the eyeliner I’ve always loved you couldn’t really notice they were gone. I decided to have a bit of fun with that too and tried out false eyelashes a few times.

At times I marvelled at my smooth, hairless body and at other times I felt like a plucked chicken.

The first time I posted a photograph of myself without a wig on my Facebook page I knew I had reached final and complete acceptance: this is who I am.

Yes it has taken many years for my mind to finally adjust, but looking at myself in the mirror with hair on, with no hair on, trying on different wigs, I no longer have that uncomfortable inner jolt – it’s like looking at myself wearing a different top. My mind has finally accepted that all those versions are me.

At first losing my hair seemed to be the end of my world, but it wasn’t. It was the beginning of something new and a blessing.

I no longer had all that hair to hide behind – now was the time for me to figure out who I really am, for the real me to emerge.

As a woman I have never had more self-confidence. I love my wigs, I love the “other worldly” look I have with no hair on.

Yes I mourned, I felt anger, frustration, fear and it was important to ride through that storm. It was important to acknowledge the sense of loss, to mourn that loss as you would any loss. But as with mourning any loss it doesn’t last forever.

Perhaps the most challenging aspect of Alopecia Areata is that it is very unpredictable – doctors do not know why it switches on or off. It can go into spontaneous remission then switch on again. For me it is important to know and acknowledge this, yes it may all grow back again and shed again, it may all grow back and remain, or it may never grow back again.

A woman’s true beauty is her inner confidence, her inner sense of identity – not a bunch of hair follicles.

If you are experiencing hair loss for whatever reason, rest assured: there is life and happiness after hair!

Yours in hairless happiness,
Lisa Oosterhagen

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Comments (1)

  • Avatar

    Pippa Moore

    |

    Hi Lisa,
    I’d love to chat you about your alopecia if that’s ok – my daughter Jess has it and I am trying to help her as best I can. Is this your email?
    Thank you,
    Pippa Moore
    0836965386

    Reply

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