Alopecia Universalis – Ten years down the path

Alopecia Universalis – Ten years down the path

Oh, it must be great wearing a wig!! You can change your hairstyle whenever you like!” Say the many people in response to my telling them I wear a wig.

This is true. I can go long, short, purple, brown, blonde, just go where a whim takes me. The beauty of wig wearing is also not having bad hair days or at least, not nearly so many. My bio hair was fine and very, very straight, so styling was a bit of a nightmare. And if I got wet or hot or the day had a ‘y’ in it, chances are there was something that would upset me about my hair. I complained bitterly about the straightness and the lack of any bounce. But what I would give to no longer have Alopecia Universalis and have it back now!

Let’s be clear here. Ten years down the Alopecia Universalis path and I am a comfortable wig wearer.

I now know what works for me, what is comfortable, that I love a hand-tied wig over wefted, that the lace hairline is non-negotiable, that some synthetic wigs ( like my Rachel Welch) are amazing and even my daughter,  who has the best ever hair loves the long, layered one I wear when I want to be glam. And I am finally ok with it. I have worked out how to do a pretty authentic looking updo,  have been in an open-top car on a motorway and not suffered any embarrassment, have walked up windy and blustery mountains and managed to not see my hair fly off in the opposite direction. So I am OK. Usually. But in the hot summer months, or whilst sitting on a beach, I am too hot for a wig so I wear a scarf instead.

I long for my own hair,  limp as it was.  And like any grief,  it can grab you suddenly and relentlessly making you miss one of the things that made you, you.

They say a woman’s hair is their crowning glory. That may be true for many, my daughter included,  but I never would have described my bio hair as anything other than…on my head and a very pretty chestnut brown. But I miss it because it was ME. I can be wearing a fabulous wig and let’s face it Simply Wigs offer some pretty amazing choices, but I still, even after ten years, fail to see myself in the mirror. Just a middle-aged woman, with good hair who looks a bit like how I think I should look.

Wigs have come a long way over the years even in the time since I first started wearing them. And I am so grateful to the wig manufacturers for improving them and trying so hard to make them as natural looking as possible. Even the synthetic ones ( the whole wash and leave and watch them bounce back into shape is just a lifesaver, frankly) but it isn’t my hair and if I could have my own hair back again, I would in a heartbeat. But that’s not going to happen.  So, which wig shall it be today then? Shall I go long? Yeah, let’s.

Love Samantha
x

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Comments

18 thoughts on “Alopecia Universalis – Ten years down the path

  1. Oh I know only too well what you mean Sarah. I started losing my hair in my late teens/early 20s (which was in the mid-late 1960s) and that was when Everything began to be all about Hair. Especially long hair. And the focus on hair has never let up since then. These days it seems like every young girl/woman wears long, lusciously thick hair – which only tends to emphasize my own hair loss all the more. Yes, without a doubt wigs have improved out of sight over the years and for that I’m ever so grateful. However, I’ve chosen to deny myself many enjoyable outdoor activities that just don’t line up with wig-wearing – along with not wanting to provide a huge laugh to others in the event of an “accident”. I also find the summer heat unbearable with a wig on and I don’t suit hats or scarves etc. so tend to stay home a lot more instead.
    On the positive side though, a wig is so nice and cosy in the cold weather! Thanks so much to SW for providing us with a platform to share our thoughts and comfort others who suffer from devastating hair loss!

  2. You’re right Samantha there’s nothing like your own hair and I feel the loss everyday despite great wigs, thank heavens for SW.. but what upsets me: so there I was watching a documentary about menopause and the stigma of hair loss for women , as of course it’s of interest and there may be some magic cure and it helps hearing about other peoples experiences… then the adverts came on and of course the first one up was for shampoo!! Use this product and you’ll have great hair!! Didn’t know whether to laugh or cry. Who chooses the adverts? So insensitive ?

  3. made me want to cry because it is devastating to lose one’s hair especially at 19! I often think it would be wonderful to have thick hair and be able to go to a hairdresser and have it styled. I feel people with their own natural hair don’t appreciate how lucky they are and how depressing one can feel with alopecia. Thank goodness for Simply Wigs and being able to talk to a friendly person on the phone. I will be back after Christmas. Merry Christmas to you all at SW!!

  4. Wonderful story after 40 years of wearing a wig can still relate to your story, now aged 61 I am so much more comfortable in the way things are and often travel abroard and heat can affect me but love it hot weather I find a thin sweatband helps underneath and mono caps

  5. 13 years hair loss for me and it’s so refreshing to read how many of us still ‘grieve’ for our own hair. Too many times I have read how women have accepted and embraced their hair loss, and I have often felt that after this much time, maybe I should be feeling the same! It’s fantastic and brilliant if you can do that, but I too like many others, miss just having my real hair. I must say however, that I have tried many wigs over the years, real hair initially, which was very expensive, but then found out about synthetic wigs and love everything about them, their versatility, the choice of colours and the fact that a good synthetic wig can look and feel just like real hair.

  6. I lost my hair 2 and a half years ago afed 41 so so hard. Totally agree with your story however fantastic our wigs are we would swap them back in a heartbeat. Im still asking why me all the time but its just the way it is . Windy days make me panic too and have decided to stay away from abroad because of the heat. Thank you to every one sharing the stories it helps

  7. Absolutely brilliant and well explained to how a lot of us feel. I’m the same 20 years having alopecia and don’t understand why this has happened but to look “normal and blend in with society” we dress our selves accordingly with wigs!! They are amazing now and have come along way, but yes in the hot summer it’s hard and if I wear head scarf its the big C!! We all live with criticism but some can be harder than others!! Ending on a good note I work for the ambulance service and a nurse wanted the number of the salon I get my hair done ? so ladies we get amazing comments/compliments xx

  8. Thank you so much for sharing your story with us, Samantha. I have suffered from AU for 5 long years now and can totally understand where you are coming from. I constantly dream that I have my own hair back only for my euphoria to be shattered when I awake and raise a hand to my head. I have some amazing wigs too, thanks to Simply Wigs but they don’t quite match up to having your own hair. However, the AU isn’t going away so I guess I will just continue to be a very satisfied customer of Simply Wigs x

  9. What a refreshingly honest story ! Glad Imnot the only one that feels that way. Wigs are great and much improved, my confidence better over the years. Still long for my own fine,straight hair though x

  10. Thanks for sharing- I feel exactly the same! I feel I can never be the person I used to be…..

  11. I don’t know why this has been rated 3/5! It’s an honest account of how a lot of us feel, deep down. I have been wearing wigs for over 30yrs. Much as I love my wigs and the new found confidence they’ve given me, I would love to have my own hair back (as it was before we parted company)! Wigs ARE hot, in warmer temperatures. Everyone has worried about losing their wig, at some time! Wigs are expensive, for most, if you want a really convincing one. Fortunately, I get my wigs on prescription but I, still, feel the need to top these up, with more glamourous wigs, for special occasions. I, still, hate windy, or hot, days. Wigs get ruined by hats. Scarves and turbans make me think of Norma Desmond, in Sunset Boulevard – sorry but they do! Hats, scarves and bathing caps should all be made to look as though they have hair underneath them! They don’t look that great on beautiful models. I’m plain, fat and wear specs! I look like the Michelin Man, in them! ? Not everyone has family and friends, who tell them that they always look wonderful! Some of us need all the help we can get! Sometimes, wearing a wig isn’t enough! We all have good days and bad. We all have days when we mourn the loss of our own hair, even if it wasn’t perfect. Does that make us a 3/5 person?

  12. Does anyone know of a brand of makeup that really stays on, and doesn’t transfer to my wigs, I need makeup because my face is a mess due to lupus, I need wigs because I have no hair, due to lupus!

  13. Five years for me now… Best description of how it is I have read so far! All the best to you! :)And yes, I am also going long today, and peaches and cream blond, hosting a small dinner party in our garden. 20 degrees, partly cloudy, no wind, the best wigweather! But first I’ll clean up in the garden, wearing my sportscap with attached ponytail!

  14. Five years for me now… Best description of how it is I have read so far! All the best to you! ??And yes, I am also going long today, and peaches and cream blond, hosting a small dinner party in our garden. 20 degrees, partly cloudy, no wind, the best wigweather! But first I’ll clean up in the garden, wearing my sportscap with attached ponytail! ????

  15. Ooh, honey. This broke my heart a little bit. It’s been nigh on 20 years for me, I’ll be 6o in a few weeks. But I get you, for all the benefits of wig wearing – and there are quite a few, sometimes we just long to be ‘normal’. Hair loss is a kind of bereavement with many obstacles to negotiate and sometimes we fall. But that’s ok, I just tell myself nobody’s perfect, allow myself some ‘poor me’ time and then get on with it (sorry, not a very ‘woke’ term’?). Which, I’m sure, is what you do too.
    Respect to you for your honesty. Annie

  16. Thanks for sharing your story with us. Lovely for you to be so personal on the psychological aspect of dealing with it. Well done. I love wearing different colours too. Brave is good. Xx lots of love and best wishes to you , especially today. Carol xx

  17. What a refreshing and honest story. I could never buy into the whole ‘yeah, I lost my hair and everything is so awesome now’ story. So thank you for giving some balance. Hair loss is devastating whether it is thinning at the hairline or loosing it all. Our families want us to get over it and move on, but it’s tricky. Beautiful wigs help but we should remember that hair loss is like grief and that we all respond to it in different ways.


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