Accepting Alopecia

Accepting Alopecia

QUESTION:
‘Do you ever come to accept alopecia?’
It’s interesting because there are multiple layers to this particular question.


There’s quite a lot for us each to consider when we think about our own attitude towards, and acceptance of, our alopecia. I’m quite sure we will all be in different places, and my experience and feelings will be different from yours. So what follows is nothing more than an illustration of one particular person’s take on alopecia, given my own individual circumstances, experiences and personal characteristics.

‘In other words,
there’s no reason why you should feel the same way I do –
there are no right answers to these questions!”

Do you wish you had ‘real’ hair?
Not really, no. It would be nice to have amazing, gorgeous natural hair like the girls in the shampoo adverts, but how many people have hair that great? I find the advantages of being able to change style and colour whenever I feel like it outweigh the downsides. And based on what some of my more glamorous 40- and 50-something friends tell me, despite wigs being expensive they still work out cheaper than paying the huge bills to have really good hair as you get older!

Are you happy with the way your wig looks?
Yes, pretty much. I love the rooted colour, and I’m really enjoying having shoulder length blonde hair after many years of shorter darker styles. Maybe the old cliché about blondes having more fun is down to mindset! I could design my ideal wig which would be slightly different to my current one, but it’s pretty close. The improvements I’d make to this one are: a neater lace front (to be honest I just need to trim it back a bit), fully handtied, petite size.

Do you mind talking about alopecia? Do you enjoy talking about alopecia?
I don’t mind at all any more, and blogging for Simply Wigs has played a big part in that as getting more relaxed about it has been a recent change for me. I do now enjoy talking about it, and although I don’t go out of my way to tell people I’m a baldy, I quite happily share that if the subject of hair (or indeed blogging!) comes up in conversation.

Do you feel different because of alopecia? Is that a negative feeling?
A little I suppose. But I enjoy that – I don’t want to be the same as everyone else! Basically I’m a great big show off and I’m quite happy to be asked questions about my ‘differentness’!

Was losing your hair traumatic, and if so have you processed the trauma and moved on?
I was lucky that I lost my hair so young (aged 6) that it wasn’t really traumatic for me although it was much harder for my parents. They handled it brilliantly so I don’t think it had a particularly negative effect on my self-esteem, and it certainly built my resilience from an early age which was great. Mum and I wrote a couple of blogs about those early years: Kids With Hair Loss – What helped me?  & Kids with hairloss – a parent’s perspective

How do people around you react – do they care that you’ve lost your hair?
Heck no! They’re interested, for sure, but I don’t think they find it weird or see me very differently. Work colleagues don’t care because it makes no difference to whether or not I do a good job and they enjoy working with me. Old friends and family have known for years. New friends care about me, not about whether my hair is a little bit more ‘artificial’ than that of another friend who has highlights or extensions.

How would you react if your wig fell off in public?
The only possible way for me – with laughter! I think the trick is this one is to have a sense of the ridiculous and actually feel that it’s funny…if you want to cry but pretend to laugh people will know. It has happened to me and because it was early on a Sunday morning nobody saw, but if they had I’d have giggled, grinned at them, and made some cheeky comment as I put my wig back on. Again, this more relaxed attitude is fairly recent, up until a few years ago that situation would have upset me.

Would you feel comfortable going without a wig in public?
This is the bit I haven’t fully tackled yet. I don’t go out without a wig, not least because my style of dress and make up would look strange with no hair. I would need to pull off a different look to make the no-hair approach work I think. Plus the back of my head is a funny shape so I don’t look as pretty without a wig as some people may. But that said I do intend to start swimming again and am aiming to swim wig-free as it’s a lot easier and also makes it easier to get goggles on tight. I’m still a bit nervous but I can feel the moment approaching! A kind friend has offered to hold my hand the first time, and I’ll probably take him up on that.

Do you enjoy the benefits that come alongside the downsides of alopecia?
Definitely. I love not having to shave, being able to change style as I want, and I even love false eyelashes now I’ve got used to the fiddly little blighters. I wrote an earlier post about this.

So overall do I think acceptance of alopecia is possible, have I accepted mine? Yes, and almost entirely. It’s still work in progress but I feel very comfortable these days.
How do you feel about alopecia?
What degree of acceptance do you feel is achievable for you?

Let me know,
Love
Lizzie
xx


Comments

23 thoughts on “Accepting Alopecia

  1. A message for Kath regarding wearing a wig at an airport. I have travelled to many countries for many years wearing my wigs and never had a problem going through security. X

  2. I would never go out without my wig. I look like a monster. If my wig fell off, I dont think I could stand it. I’ve had alopecia for years. I will never accept it.

  3. I also have an alopecia, at first I couldn’t accept it and it really traumatized me on my high school days. I felt uncomfortable and ashame of it. and now that I’m having it again during this pandemic days kinda worsen it. I felt depressed and hopeless and kinda blaming myself why am I having this condition? Because I’m in denial that it’s really about me stressing on it and overthinking that my condition will get worse, so then I told my family that I need help becauseI can’t seem to hold it in anymore and my Alopecia is causing me anxiety, the disturbed body image, feeling of terror. I take it in as if my world is crashing down. So I pray to God and accepted it and told to myself what else can I do it’s already here I just need to eat healthy, be happy, don’t stressed out myself or don’t be so hard on myself anymore and relax. it will get better in time it will take awhile but it will be back.

  4. Accepting the fact that I have alopecia totalis has honestly been for the best part of 23 years. Why so long, you may ask? So many reasons but mainly fear and lack of self worth. I could now with the benefit of hindsight say that my ex husband couldn’t manage my inability to be honest and discuss how I was feeling. I tried to be brave, hide it even to the extent that my own children did not know I had no hair until one revealing day on a beach where my parents live.. playing tennis on the beach and yes, the inevitable happened. I will never forget how shocked they were, how they felt so stunned that they did not know whether to comfort me or run away. I fortunately found some steeliness, picked up the wig from the sand, placed it( albeit a bit haphazardly)on my head and carried on playing . It was double pain for me and my children as we were also trying to deal with my husband having an affair( which produced a child and the end of a long marriage and 30 years with my best friend) and my overwhelming grief.
    Ironically, it was always my long dark, coppery hair , full dark eyebrows which attracted attention and I despite being an intelligent and very well educated independent woman received it all as a death knell. Suddenly, I was nothing. Not worth loving… a freak. It is now at the age of 59 years that I can reprimand myself at all that wasted time and misplaced self loathing . I want to shout out to all of you who are perhaps in the early stages/ months / years of hair loss and reinforce the message that it is NOT what defines you. Too much is made of its symbolism. Just think of how many women apply colours, extensions etc to perfectly good hair. Why? It is a part of us which attracts too much attention.
    My condition is hereditary as my paternal grandmother lost her hair at 8 years old in the early part of the 20th century. She was ashamed and all her life was scarred through living with a condition which she could not share. No professional help.No amazing wig industry which Simply Wigs is a great exponent of.. just a dreadful NHS wig which made her feel even more wretched.
    Today, there is no need to feel alone, ashamed and misunderstood. Wigs are fantastic. My friends love all the styles I have worn over the years. My best friend for over 20 years did not know I wore a wig until we had known each other for a couple of years.
    My message to you all in a society so focussed on looks , simple mindedness and lack of conscious thinking is to LIVE…focus on what is real and important and…. be kind to yourself. Buy that wig which will give you confidence but never lose sight of the fact that your hair is only a small part of you. Blessings to you all.

  5. I first had alopecia aged 13, suffering a couple of bald patches which regrew. I often worried that it would return but as time went on it seemed less likely. Unfortunately a year ago at the age of 57 I noticed a few small bald spots at the back of my head. The patches increases slightly over the next 7-8 months but didn’t really effect my hairstyle and so wasn’t noticeable. However, within a further couple of weeks I suffered such a loss that I started wearing a wig. Within a further month my own hair looked so bad I took the decision to shave my head. I felt instantly liberated, my wig felt much more comfortable and I’ve worn a bandana or hats for warmth in the house or when out trecking. My wigs have received such a lot of compliments that I’m totally open about wearing one hoping this might reassure others. My latest venture has been to spend time on a holiday with friends without wigs or hats both in and out of doors. This Easter weekend with its glorious weather made me brave enough to go out, very publicly, bald and nobody batted an eyelid. My partner is very supportive and I felt great. Don’t waste time worrying, just be grateful you’re not sick, hold your head up high and enjoy having no bad hair days or expensive trips to the hairdressers.
    Nb I think my hair loss followed an emotional trauma that still isn’t resolved. If someone offered my hair back or a solution to that trauma, I’d definitely choose the solution to the trauma.

  6. Hi Kath

    Great question! I’ve just talked about that in my new article on Wigs in Summertime – hopefully that will answer the question 🙂

    Love Lizzie xx

  7. Hi Lizzie, thanks so much for sharing your experiences and advice. It’s amazing how many people are out there sharing the same problems and insecurities as myself and it certainly helps to read your blog.

    I’ve worn wigs for around four years now because of thinning hair and although I would prefer to have my own hair back as it was, I think I have accepted that out of a five sisters (older than me – I’m 68) I have drawn the short straw but just have to get on with it – I tended to think that I would follow them and keep my hair for life so it was a great shock when I realised mine was getting thinner.. I remind myself that at least I got to this age for it to happen and to lose your hair while so young would be so much worse. One question please? I’m going abroad for my holidays and have a fear of wearing a wig while going through customs incase it sets off the alarms because of the metal tabs at the ears. Funny question I know but wondered what you thought about this? have you had any problems? ps Thanks to Simply Wigs I have a great style that i stick to but maybe time for a change!

  8. Hi Jess,

    I also lost my hair around the age of about 23 through a traumatic experience. It fell out and kept coming back in clumps. I certainly agree that having hair does not define you and I am still very much the same person as I was before. Although I shy away from some things, I still did a sky dive last year and plan to do another one next month.

    As I said to another lady, I certainly wouldn’t want to get your hopes up, but I started having steroid injections injections last November. My hair has come back gradually all over the top and sides. I still have a couple of patches behind my ears and towards the nape of the neck which I still put minoxidil on and I am not quite ready to go without a wig yet but it’s a massive improvement to how I was before. I am still worried in case it does come out again, because there are no guarantees but I wasn’t expecting the re-growth that I have had.

    To me, it’s not really relevant whether someone has hair or not. I guess it’s more other people or society opinions that are the pain. We should try to happy in our own skin, whatever that may be.

    Unfortunately, I can’t have children so just be grateful for the things that you do have.

    Keep on smiling!
    xx

  9. Hi Janni,

    I just saw your post. I don’t know the reasons around your hair loss or what condition your scalp is in. I lost mine through quite a traumatic experience when my boyfriend was really violent to me. I haven’t had any hair to speak of for over 10 years. I don’t know if you have tried any treatments at all and I wouldn’t want to get anyone’s hopes up.. I have just finished a course of steroid injections at my hospital. After 8 months I have about 60% of my hair back and it’s still coming through, even the smaller, fairer hairs which is a good sign. I’d forgotten what colour it was. I also use minoxidil.

    I’m sorry that you haven’t come to terms with it. It’s a horrible thing to have to deal with. It makes it so much easier if you have nice people around you who just love you for who you are. I, too, am very active. I don’t know how you manage that but I find it a little awkward and wear a cap with everything! My nurse bought me lots of scarfs and fluffy shower caps-so comfy. She thinks I should do talks on it but I wouldn’t know where to start. She also came across psycho-dermatology whereby you discuss any possible issues around hair loss but I think the nearest place they do that is London.

    Anyway, chins up – another problem I need to deal with!

  10. What a lovely story. I am sorry to hear about your hair loss. At an older age, I would hope that not a lot fazes you and that you have a strong resolve. It certainly seems like you have now. I wouldn’t talk about mine for years. I was depressed for a few years. Not because of the alopecia but because I wasn’t ready to return to work, so it was more to do with losing my job in London. I have never returned to work there since. I chose to work more locally as that is where I am more comfortable – if you can ever feel comfortable at work. I do now but it has taken a long time. I have only just discovered the lace front ones, in that, I thought they were out of my price range before but I have met a lovely lady local to Colchester who I can buy them off very reasonably. I am rid of my horrible, violent boyfriend (whose fault it was I lost it in the first place) and some of it has even grown back a little.

    It’s nice that we live in a time where it is more accepted and there is more awareness of the condition. It’s not the case that I feel any different myself, I’m still bubbly and always smiley, I just lack confidence at times which is natural. I am now volunteering with various projects, am open about it and everyone has been great.

    It’s so lovely to hear your inspiring stories and good to link in with other sufferers.

    Thank you.
    Jane

  11. Thank you everyone for such fascinating comments – your stories are so interesting and as Janni said it’s nice to hear a diversity of attitutes
    To answer the question about what I wear at night, I don’t wear anything. I’ve found that wigs deteriorate faster (the dreaded wig frizz) when worn in bed, so for that reason as well as comfort I leave my head bare at night.
    Love Lizzie xx

  12. Gosh – what diverse views! I will never accept hair loss, why should I? it doesn’t make me special, I have addressed a situation and manage it with reasonable efficiency – doesn’t stop me crying sometimes – after almost 10years – which I did not anticipate and will be with me for the rest of my life. Don’t want sympathy – I’m out there – everyday – I run, I swim but I’d love every hair follicle on my body to revert to previous levels of service!
    Yes, SW provides a great service – and I have already discovered wigs with grey tones in. If only the eyelash situation could be sorted. Great make up lesson a couple of weeks ago … Kick on everyone

  13. hi lizzie
    just thought you letter was superb.
    thank goodness i to have a sence of humour………

    Boy it was very upsetting at first to loose some of my hair, not only for my husband but for my daughter and our 2 grandaughters?
    i would looked at my elders and noticed how their hair was growing fine and thin…..oh well thats what happens when you get old?

    So i went to see my doctor…….she sent me to see a dermantologist Dr………she said men go bald so women can go bald, go home and talk to your family!!!!!!
    Can you imagine how i felt at the age of 71 and not a grey hair in sight………….well my hair got worse……..so my doctor sent me back again after one year……I saw another doctor……..and this time she said something was wrong and should come back next week, as she had 12 doctors that will have a look at my hair and ask loads of questions. Back i went the following week……..boy did i feel nervous, this went on for an hour. my doctor came in and said we will be in touch in a couple of weeks.

    the result……I have Alopecia-secondary lichen planoplaris……unknown? my hair will eventually all go.

    i have no eyebrows……..but at the momment i still have eye lashes……no hair anywhere else.
    she then made an appointment for me to see a clinical psychologist………i did laugh at this as why do i want a psycholoist??? WEll it was fantastic………the best 8 visits i have every enjoyed talking to a stranger, thanks Rosie, instead of me getting upset and crying i can now talk to my family about my hair loss and how i feel and have a laugh. i was told i was very lucky to have this help……..i can only say that i wish others in other parts of he country could have this help to…….young and old female and male….. it is so heplful and you feel so good.

    I have been asked to talk about my experiences and during my talks i take my wig off…….
    what a shock they all get, but i have a few experiences that i like to tell……. ( we take our grand children to school and sometimes i get a tap on the shoulder …… hey grandma you have forgotten your hair today )………that make them all laugh and then i carry on with my talk and the audiance relaxes………then they ask so many questions and they know friend who have patches and do nothing but change their hair styles and just live with it!!!

    i do wear some superb short wigs and i do have hair that imy husband shaves for me and i do show off my baldness, but I do like it and i am lucky to have a good shaped head which is lovely and brown at the moment.

    although i am 73 and very new to Alopecia……….i still enjoy my life as a semi retired designer, the people who i meet are so suprised when i tell them i have Alopecia and wear a wig……they cannot beleive it.

    I came into this world bald and it looks as though i will go out bald……….but they might put my wigs in with me when i go……………..when that will be i do not know………like us all

    cheers and best wishes to you all
    Cherrie Xxxxxxxxxxxxxxxx

  14. Hey Lizzie
    I’ve been wearing custom toppers for twelve years now since I was 46. If SW had been around then, I would almost certainly have gone for a Lacey, the human hair enhancer. That’s all I need, really. Instead the hairdresser I saw shaved my crown. These days I buy and attach top pieces with wig tape – absolutely bomb proof. All done without assistance and see a local hairdresser to cut in my pieces. It took me a while but I do feel comfortable and accepting of my alopecia these days. It’s a really sad when people to feel embarrassed or ashamed. Alopecia is a medical condition…would we feel embarrassed or ashamed of a broken leg? A hayfever attack?

    At home I wear bamboo viscose turbans, so comfortable, SW has a fabulous array of these and I often buy a few just to cheer myself up, if I don’t need new hair. When we go on holiday, I wear them all the time, give my scalp a rest. Some of the close fitting simple ones are great for night time. Love, love love the blog and the SW site.

  15. Hi Lizzie
    I have obviously been lucky as I didn’t start to lose my hair till my 60’s but it felt traumatic at the time as I felt I was ‘ageing overnight’. As it happened gradually and I couldn’t seem to find any good advice in my area I coped alone and almost ‘retreated’ for a year or so not wanting to bump into old work colleagues or have photos of myself put on facebook!
    I have however ‘come out the other side now – I happily twist the few strands I have left (diminishing all the time!) into a clip at the back of my head and I’m ready for my day. I spend nothing at the hairdressers any more – my hair was always fine and difficult to style so now it feels like a release not to have to spend ages on my hair every day!
    I haven’t actually bought any wigs, there was a time when I might have but never felt confident that what I might buy online would fit well or look good in real life. I also thought wigs might make me hot as I also have a thyroid condition which makes temperature control difficult at times.
    So now I’m 68 and I’ve completely accepted who I am, I’m still the same person I was before hair loss – and once again I can smile happily at everyone I meet.
    This year, to protect my scalp from the sun I have bought some of the lovely turbans sold by Simply Wigs in different colours and am finding them comfy and quite cool to wear – I love them!
    My only regret is the time I wasted feeling sorry for myself!

  16. My hair started to fall out rapidly in my mid 30’s……it was very traumatic for me and had a huge affect on my confidence and personality. Although I used cover up with hair fibres and extensions no one use to notice the bald areas as I was such a pro at masking the problem! But doing the above took me a long time in the mornings ( before work) and made me very frustrated.
    With having alopecia arreata and traction alopecia ( from the extensions) I finally decided enough was enough and to order my first wig online…….well ladies I ordered a lovely looking bob from a company (unbeknownst to me was a Chinese company) a lovely looking bob which ended up a ginger mop (which my cat was scared of haha!)
    Lesson learnt!! Simply Wigs was my next choice and now 2 years on have several styles to choose from.
    My big regret was not to decide to buy my hair sooner as I wasted too many years trying to cope.
    Everyone knows I wear wigs (as I tell them) even if they’re complimenting me on my hair it’s just such a relief to be actually living life again! Xxxx

  17. I lost my hair 40 years ago at the age of 11, and have been completely bald since them. Am I resigned to it? Yes, I accept there is nothing that can be done about it.

    Do I accept it? No. I still would rather have some frizzy, ratty birds nest of hair that is attached to my head. I would rather have to shave my legs and under my arms. I would love to have eyelashes to keep dust out of my eyes.

    I love swimming and usually wear a swimming cap to go in the local pool, although if I go on holiday to somewhere hot I usually wear a headscarf during the day, which I also wear in the pool so that I don’t have to bother changing hats in front of people.

    To Helen, who asked what you do at night, I just wear nothing on my head at night, I never have, even when it is cold. I must have acclimatised!

  18. I lost my hair a week after my 21st birthday.
    For years I don’t think I really accepted it. Looking back it was a traumatic experience (within days I was bald) and I didn’t want to accept I may never have hair again.
    Since the birth of my children I came to realise that your hair doesn’t define you. How you behave and treat people is what really matters.
    Now aged 33, I have accepted my Alopecia.
    I always have fabulous hair and look glamorous. Just this morning the dentist gave me a white filling for the price of a NHS one as she said she could tell I liked to look good….If only she knew this glamourous ‘hair’ was a wig!!
    Alopecia has given me my confidence and made me strong. I would not be in the fortunate position I am now without losing my hair.
    Thank you for your article.
    Xxxx

  19. Hi Lizzie,
    I’ve accepted alopecia , it took me awhile but now , like you said having a choice of styles and colours is fab .
    My wig flew off in front of some builders when I was younger, I was so embarrassed! Picked it up and rushed home, didnt go out for three days!! But had young children then , so had to get on with it!!
    If anyone mention how lovely my hair looks and how do I keep it looking so good , I tell them it’s a wig!
    When it’s hot i wash my wig then towel dry, whilst it’s still damp put it on my head to dry properly! Keeps my head cool too!!
    I wouldn’t go without my wig in public. I can’t wear a wig at night , find it too uncomfortable, Silk scarf instead!
    How do you cope at night, can you wear a wig?
    Love
    Helen
    XXX

  20. Good reply Lizzie – thank you.
    At times alopecia is an inconvenience, but l actually think there are a few benefits as we tend to look glamourous all the time with our wig styles!!
    If anything, l miss not having consistently natural eyelashes to protect my eyes and lm abit lazy to always wear false ones. I don’t miss waxing or shaving.
    I chose whom l share my fabulous ” hairdresser” with, particularly when lm asked who they are!
    I chose to go bald in the privacy of my home. I doubt l will ever be brave in public unless by mistake…….
    A sense of humour is an attribute in life anyway.
    My sister also has alopecia and from a very young age. My parents blamed themselves believing it was due to prednisone drug, never realising it’s an auto-immune disease anyway. When my hair starting falling out 6years ago in my fifties l knew what to expect……..not that l was happy about it and Infact l was devastated at the time.
    Life is still good and nothing changed except l have total alopecia, but lm still me, a mother, grandmother and wife adding to the blessings.
    My grandchildren know why l wear wigs and l decided it was easier to be truthful and not feel ashamed. It’s never been as issue and l can change styles/colour and everyone is at ease.
    I suppose we all have different stories but alopecia is not to be feared.
    Simply Wigs UK are most helpful too. I recommend them to other New Zealanders because there fabulous Wigs are under half the price delivered to our door within 7 days- great service.

  21. Hi
    I also now see alopeacia as an advantage, the fact that I feel confident in my wings, due to how good they look.
    It’s the second time I have lost my hair, the first time was at the age of 13, then again 7 years ago. I have total hair loss this time , so wearing a wig is now for life.
    I have been able to try different styles and colours.
    My friends are complimentary and see the advantages , i.e., after swimming, my wig looks so good, no wet lank hair. I keep an older wig for that.
    Anyway there are worse things in life.

  22. Hi Lizzie
    I loved reading your article, so honest and true. I lost my hair when I was 46, 5 years ago, so I enjoyed all those years with thick black wavy hair. I still find it difficult, but have accepted now hat I am who I am. I agree now (but couldn’t until the last couple of years) that it is great to choose your style and some of the wigs are really great. Most of my friends forget I wear a wig and people who don’t know say they would never have known had I not told them.
    I’ve moved to Spain now and I am finding the heat difficult, so I take my wig off when I can at home. We are lucky enough to have a pool to swim in and I go swimming every day without a wig. I never go out without my hair and even found that I felt more comfortable at the gym with an old wig on instead of a bandana.

    I can’t imagine how anhild would feel or your parents losing your hair so young. You’re very brace and strong. We are what we are and can exploit the difference in a very positive way. I have the smoothest skin out of all my friends and won’t have to deal with grey hair. I look and feel younger than ever before and intend to carry on in a positive way! Thanks for sharing your experience
    Karen xxx


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