Sara's Story | @awingandahair

 My Alopecia Story | Ageing...but not fading

And I’m delighted to join Peluka Salon as an ambassador to represent the ageing…but not fading lovely people encountering alopecia in their later years.

 About Me

Alopecia stole my hair from me last year (i.e., 2020) at the age of 60, and I bought my first wig in July ‘20.  For me the entire hair loss process took about 18 months,  from first noticing that I was shedding more hair each time I washed it than was normal for me, to taking the plunge and asking my hairdresser to shave off what remained.  In that experience, compared to those who lose their entire head of hair in a matter of weeks, I consider myself to have been fortunate.  In fact, when I look at the entire experience objectively I have been so very fortunate – if such a word can be applied to losing every hair from your body.

Diagnosis

I put up with the gradual thinning for a long time – I’d had some experience of it happening before , albeit much less noticeably, and it had always grown back.  I took special hair loss supplements  and tried to forget about it.  But as it got worse and became visible to the extent that I was becoming really unhappy and self-conscious about it, I sought advice from my GP.  This led to a referral to the NHS dermatology clinic where they confirmed my GP’s diagnosis of Alopecia Areata.  This gave me something to look up on the internet, but beyond that it was no comfort, especially when I was advised that none of the available treatments were particularly effective.  Back then I was willing to give them all a go – there was a time when I would have tried anything to have my hair return to ‘normal’.  

Treatment

I was first prescribed an ointment for the scalp, which was nasty because it made my hair stick to my head, I’d only use it at night.  Also advised to buy Regaine – I used this for about 3 months to no effect – and the fact that I’d been warned that any hair growth it did generate would fall out when I stopped using it, put me off continuing its use.

A private dermatologist I consulted once we were out of lockdown prescribed a different scalp application, which also didn’t work, but at least wasn’t greasy.  I also had one course of scalp injections with her, they were painful, expensive, and didn’t work and I decided not to continue because they can cause pitting of the scalp, and by this time I’d accepted my bald state, and didn’t want to spoil the look of my scalp; I discovered I had a nicely shaped head and I continue to be quite happy about that – these things matter when you are bald. 

My journey to my first wig

Originally, during my time of non-acceptance I very seriously considered going the route of buying into a hair replacement system, I thought this would be the best way of pretending nothing had happened.  But I’m so glad I didn’t take this step.  Partly because I’ve discovered that wigs allow for so much more freedom and versatility,  you can have long hair one day and short the next, and also because a hair replacement system comes with a constant need for maintenance  (at least if you still have hair growing it does) which for me would have meant regular appointments at their London salon to have the system adjusted as the bio hair grows back (or not in my case) – it simply wasn’t a commitment of time  I was willing to make.  I got impatient enough having highlights done when I had hair.  Hair replacement systems are also very expensive – I decided I’d sooner use the money to buy lots of wigs!

The owner of the salon who helped me with my first wig was brilliant.  Towards the end of last June as we were approaching release from the first lockdown, I’d been walking past the salon regularly to check when they were re-opening, and on one occasion she was there.  I explained my situation to her, and she arranged for us to have a Zoom consultation.  She sent me a video clip showing how to measure my head, and suggested I browse some websites for styles that appealed to me.  One of my sisters had found the Simply Wigs site, and I spent some hours putting a wish list together.  (I wouldn’t like to add up how many hours I spent browsing wig websites and You Tube wig reviews last year, it’s still a favourite way of passing time!) Some of the styles I chose my wig consultant advised weren’t suitable for me, my head size is Petite and she was keen to find a style to fit, and one that didn’t overwhelm me with the volume of hair (something that would never have occurred to me).  Some of my choices she didn’t supply but one of them was Ellen Wille ‘Elite’ petite.  She ordered it for me, in the shade Champagne.    When it arrived, she advised me how to put it on, measure the correct space between hair line and eyebrows – my natural hairline had vanished by then and it’s funny how quickly you forget where it was.  My first reaction was that the colour looked so dark on me (but this was because my bio hair had become so pale, I didn’t go grey, instead my hair became a very pale blonde ) in reality this colour was almost identical to how my bio hair had been about 10 years earlier.  I soon got used to seeing myself with the colour, and the wig, being very lightweight didn’t swamp me. I’d opted for a synthetic fibre wig, taking the view that caring for a wig was going to be challenging enough, at least with synthetics you can just wash and drip dry them – perfect for a beginner.

Shaving my head

I made the decision to have what remained of my hair shaved off a few weeks after getting my first wig.  By then what remained of my hair was so fine and wispy, it looked like a dandelion seed head.  And that look aged me so much!  I’d never been one for taking many selfies, but I logged much of my hairloss experience via photos, and I’m still astonished when I look at how ageing my thinning hair was.  I feel wigs have given me a new lease of life – and although I’m still not quite confident enough to buy a long hair wig, feeling that perhaps I’m a bit too old for swishy hair, I’m not saying ‘never’.  Shaving my head gave me back the control of when my hair left me, rather than watching it vanishing down the plughole – that’s why I did it, and I’ve never regretted it.  I was interested to see what might grow  back and nothing has.  I also feel that I look better bald rather than with feeble wisps of hair; at least when I’ve put my makeup and brows on I do.  I know that the shock of this decision was a bit much for my husband, but he understood my reasons and has supported me every step of the way.

Finding acceptance  

I moved from a state of utter misery to acceptance of what was going to be total baldness during the period of the first  UK lockdown (March-June 2020).  I consider myself so fortunate that the lockdown coincided with the time of my most rapid hair loss, at least it seemed that way because of how much had already gone by then, whatever, by then it was very visible.  Lockdown meant I couldn’t go very far, and I was furloughed from work so very few people saw me.  The disadvantage was that I couldn’t get a proper wig consultation, but I needed those months to reach the point where I accepted that I was going to have to wear a wig,  and this in turn meant that I wasn’t particularly frustrated by the time it took.  I appreciate that would be an entirely different experience for someone who is at the acceptance stage, and the present lockdown means there are no face to face consultations, and feeling so lost with the enormous range of wigs that can be ordered online – just where to start?

I can’t say exactly when it was – but for me, acceptance  of my baldness came almost overnight – I was out doing my usual walking circuit one day,  thinking about my hair loss,  when my mind said to me ‘If I’m going to have to wear wigs I want one in every colour!’  And whilst I haven’t got one in every colour (yet, give me time, it’s only been seven months) I will freely admit to having one for every day of the week (and a spare, or two).

Some benefits of social media for hair loss

As I reached acceptance of my new reality I decided to start a new Instagram account.  I’d used Instagram for years; but wanted to maintain a separate account for my hair loss story.  I also wasn’t quite ready to come out to everyone via my other account –this way was safer.  And it’s been amazing – I know social media gets a bad press, but it is capable of doing good stuff too.  For anyone thinking of connecting this way, my advice is to keep the account settings private so you can check out new follower requests before letting them in.  I’m not concerned by how many followers my account has, I want them, and also the people I follow,  to be authentic.  I’ve made some lovely online friends this way,  and learned so much – and most importantly of all, the loneliness that alopecia caused me has been lifted.  I’m also fortunate to have found a fellow alopecian friend  locally who has come alongside me on this journey – she’s had the condition since childhood, and so her life experiences with it are different to mine – but we each learn from,  and bring something to the other.  And have found we have so many things apart from our hair to talk about!

The realities

Although first diagnosed as Alopecia Areata, it’s evident that I have Alopecia Aniversalis – in the past twelve months I’ve lost all my hair , all over.  Losing my eyebrows and eyelashes is without a doubt the worst of all (something that the majority of alopecians say).  First thing in the morning, without my brows (I’m waiting for an appointment for semi-permanent brows) and lashes, is when I feel at my most vulnerable , and I think that is because I look somehow diminished, at least that’s my perception.  I often use eyebrow transfers, which at least give me some sort of face first thing.  My makeup routine, such as it was pre-alopecia,  was always simply a dash of mascara and some smudgy eyeliner, now it’s a bit more work and takes longer.  I discovered the trick of using eyeliner to give the impression of eyelashes – and I find that wearing glasses helps disguise the loss of my lashes too.  But of course, without lashes everything gets in my eyes, and synthetic wig hair in the eye is very unpleasant.  Lace front wigs allow for me to wear my hair off my face very naturally , so I tend to style them this way – and I am also keen to buy a wig with a fringe cut into it since that was how I wore my bio hair.  I do find that although a petite-size head I can get away wearing John Renau and Ellen Wille  average size wigs as well which extends the range of options for styles as well as colours,  although  as a glasses wearer my main consideration is where the wig’s ear tabs sit in relation to the arms of my glasses. I wear varifocals, so any disturbance to how my optician has created the lens interferes with my vision and so I don’t have the option of wearing the wig either under or over the glasses, the glasses must sit correctly.  For me, if the wig doesn’t work with the glasses, then at the moment, I can’t wear the wig.  I will get my contact lens prescription re-done at some point, although re-learning how to insert lenses, without having eyelashes to help lift the eyelid, is yet another consideration, so for the time being I’m  happy to stick with wearing glasses.

Menopause and hair loss

Of course, not all hair loss is caused by alopecia, for many ladies of a ‘certain age’, the menopause will often play a part.  This was something that also caused me grief before my alopecia diagnosis – I didn’t want to become a  woman whose visible scalp was a giveaway as to her likely age bracket.   I don’t believe that I look my age; I have inherited lovely skin from my mother, and have always looked after it.  Whilst I don’t believe that surgical intervention or fillers would be a path I’d travel down, I do take regular supplements to ensure that I’m doing the best for my body inside and out, and although I came late to accepting my need for HRT I’m now a firm advocate – do what’s right for you.  I also believe that if thinning hair is entirely down to menopause, (and not alopecia or another medical condition) then taking a good supplement will help the remaining hair to thicken up, and encourage new growth – and this too was the advice of the dermatologist I saw privately.  I did try the products she recommended in the three months between my two appointments.  When I returned for a follow-up after the first round of scalp injections I told her I wouldn’t be continuing with the treatments – and she agreed with me that my acceptance of my hair loss and the resulting reduction in my levels of stress and general unhappiness would be the best things to help restart hair growth, if it was to start again.  So far it hasn’t, but I’m at peace with that – although it’s not until you lose your entire body hair, and then experience a truly cold spell as we have this week  [February ’21] that you appreciate the value of the fine body hairs you previously took for granted.  I couldn’t work out why my neck was permanently cold, irrespective of what wig I was wearing, until it dawned on me, I no longer have any hairs on the back of my neck, and they were valuable insulation.  Cashmere polo neck jumpers have become a ‘need to have’ rather than a ‘nice to have’ so every cloud…!

Things I wish I’d known when my hair loss started to become noticeable

You can buy Toppers to help disguise the thinning.  I never knew these existed in such a range of quality/colour until I started to shop for a wig.  And whilst I might have struggled to find my bio hair colour, I’m sure that with the help of the right salon I would have found a solution that whilst not reducing/stopping the hair loss would at least have taken some of the pain and self-consciousness from my experience.

There is no shame in losing your hair.  I take thyroid medication, and thyroid problems, like alopecia, are related auto-immune conditions.  Having one doesn’t automatically lead to the other but there is a relationship.  Interestingly, I had endometriosis during my 20s/30s – and this (and other gynae problems) seems to be quite common in other female alopecians.  So, no matter what it was that was causing my stress at various points in my life, I appear to be someone who had a greater likelihood of being affected by alopecia.

There is a huge community of alopecians ready to welcome someone with a new diagnosis and struggling to understand this condition.  Reach out – there is so much information and support to be had.

 XX

Sara