Alopecia, wigs, and how to talk about it

[dumbstruckdumptruck]

Any wig-wearers out there?

I've known I've got androgenetic alopecia since I was in my early 20s, but managed to largely ignore it until late last year when I saw photos of myself on holiday and realised how bad it had become. It's been getting progressively worse this year, and I've now got big patches that are very, very thin behind my hairline, on the sides of my head and at the crown.

I work on video a lot - recording content, teaching online, running workshops and regular events - and over the last few weeks I've really struggled to hide my hair loss.

So I have an appointment with a hairdresser specialising in wigs and toppers in a few weeks. I'm not sure if I've got enough hair to clip a topper in any more, so I may be going to a full wig. But we'll see.

I feel a huge mix of emotions – deep sadness, grief, embarrassment, uncertainty, a bit of excitement, frustration all mixed together. I know the specialist will give me advice on specific wigs and how to get started, but I wanted to see if anyone here had experience of making the move to wearing hair?

I'll need to let my colleagues and team know – they'll see something's looking very different and I want to be honest with them. But how? I don't really want to have to disclose over and over to them individually, but nor do I want to make 'An Announcement' about it.

What about my regular, long term clients? My neighbours who I see every day walking our dogs? I know it's not nearly as big a deal to them as it is to me, but I can imagine some of them commenting on how my hair looks different. Not telling the truth about it if it's mentioned feels like lying, even if it's a lie of omission, but I also don't really want to talk about my hair loss with everyone all the time...

My head feels like such a tangle (pun not intended!) and I'm just looking for other people's experiences with this, if there's anyone out there?

Note: I've tried plenty of supplements and treatments over the years including finasteride, minoxidil, and nioxin, had iron and hormone levels tested, etc etc. I've been round all the carousels and I'm not interested in trying to 'fix' my alopecia any more, so I won't be responding to any "why don't you" comments aimed at treating my condition medically. I'm sure they're well-intended, but I'm past that conversation now.

Organise some fundraising for an alopecia charity and explain during an email about the fundraising.

www.alopecia.org.uk/

That's a really good idea, it would break the ice.

My husband and mil both have alopecia. Mil wears a wig, husband doesn't.

When husband was losing his hair he decided not to try a wig as the male ones seemed a bit rubbish.

He's a very private man so I had to really push him to tell his boss what was happening. She was amazing about it because she was so relieved. She'd noticed the hair loss and thought he was having cancer treatment and hadn't told her.

He emailed her and then just told people as he saw them. He literally went from thin hair to no hair over the Xmas holidays.

He got a few comments when we saw people we'd not seen for a while but it doesn't happen any more.

I've never seen my mil without her wig. She loves it when people give her compliments on her hair. Makes it feel more real I think.

I think at the most people will say “your hair looks nice” and you can just say “thank you” and smile, it is likely they will realise if it does look a lot different and not press on with “have you had it cut?” or similar. I went as far as getting a wig fitted when I had alopecia areata and put off and put off starting to wear it, as it happens it went into reverse and I didn’t need to but I do remember feeling extremely nervous about people noticing.

I know exactly how you feel dumbstruck, as I have made the same transition, as a result of alopecia areata. Going into work was the worst bit. Really tense-making. I didn't like the idea of not saying anything at all,but I also didn't like the idea of a 'big announcement'. I tried to make quite a few low-key remarks aout it just as-and-when, both before and after first wearing a wig. Sort of a halfway house. People tended to say very little about it, but it didn't really feel like an awkward silence: It probably reflected the fact that is was just way less important fo them than it was for me.
Once the transition has been made, it really is a relief. Wigs can look lovely and it is nice to give up the battle with hiding patchy hair. I hope that part of you can look forward to it. There are some really lovely wigs out there.

Very best of luck to you.

Could you just say you have had hair extensions or a hair system fitted rather than use the word wig? The former has positive connotations, the latter not so much. Celebrities use extensions, hair systems and hairpieces all the time, in fact probably most of them do, and loads of non celebrities like myself wear hair extensions. I think if you embrace it and don’t show embarrassment and use positive language you will be fine.

Oh, another thing: If people comment on my hair, saying 'That looks nice, have you had it done?' etc, I say that its a wig - in a low key way. Because, like you ,I don't like the idea of lying by omission. It always turns out ok, and people don't seem to require me to elaborate or make it a big conversational thing.

My sister, however (who has the same condition as me and has worn wigs for decades) just says 'Oh, thanks' and doesn'tmention that she is wearing a wig.
The moral is: Whatever strategy you are comfortable with will work for you

I lost a lot of hair suddenly due to alopecia areata, I had a sort of reverse tonsure, a clump of hair at the back but nowhere else.
I found a lot of useful advice by googling mumsnet hair loss/alopecia/wigs etc.
My regular hairdresser didn't supply wigs but was very helpful with advice. I bought an inexpensive artificial wig online from simply wigs. I took the wig to my hairdresser to be thinned and trimmed. Most wigs have a great deal of hair which takes some getting used to when you've struggled with thinning hair. I went for a short pixie cut. I also found that wearing a velvet and velcro headband helped to keep it in place which gave me more confidence.
You tube has a lot of useful advice as well.
I told friends, they knew about my hair loss anyway and I was open with other people that I saw regularly, if they commented on my new hairstyle I explained that I'd developed alopecia and it was a wig. I wore hats most of the time when it was falling out so it's likely that neighbours and people I saw out walking or around the town didn't notice. My main concern was that people would think I was having chemotherapy which is why I was keen to explain the reason I was wearing a wig when anyone commented .

One useful thing i discovered was that if you are buying a wig for medical reasons you don't have to pay VAT. I got a letter from my GP and ticked a box on the website when I bought the wig and the purchase was free of VAT.

Oh gosh you're all so kind. Thank you.

I think you're right, @LadyVictoriaSponge and @Random789, finding a way of saying it that's brief and positive is a good idea, so I have the phrase in my head and don't have to scrabble around for it. It's good to hear too that people don't tend to say much about it - I think pity is the response I'm most worried about having to deal with.

And @Quinque that's really helpful advice. I've been falling down some rabbit holes on YouTube recently and so i think I'm going to start with getting help from this consultant for my first one, and then perhaps all the rest won't feel quite as overwhelming.

It's such an odd mix of feelings... horror and relief all in one. I know how I feel will evolve over time and one day it'll just be normal, but this point in the process is really uncomfortable. I have this expectation that I should 'be positive!' and put a good spin on it, and be strong, but I just don't feel those things right now.

I had to come off the alopecia forums because I couldn't cope with the Be Positive sentiments either, I just wanted to hide. I did get a lot of support on MN though. In fact I think that was what got me started posting here regularly, it was over 10'years ago now.

The hair pieces extensions etc you can get now are amazing. The colour match and quality are superb. I'm sure you will get the solution for you. Good luck

@EspeciallyD it's a bit much, right? It would be great to get to the point of feeling really strong and confident about it one day, but I think I need to (at the risk of sounding like a twee instagram post) feel what I'm feeling first – unpleasant though it is.

And thank you, @ColeensBoot, it's reassuring to hear. The women I see wearing wigs on Instagram and YouTube look great, I just can't quite imagine it not being obvious that the hair isn't my own...

Plus I live in a hot country, and I like to sail... wind, heat, sweat, salt... it all feels very complicated. One step at a time, though, I guess...

My MiL's wig is really good and you'd never know if you didn't know. What gives her away if you like are the badly tattooed eyebrows. She had them done years ago in Singapore and regrets it massively. Newer techniques for eyebrows look a lot better.

Oh, yes, the 'be positive' thing is a bit yuk. THere are lots of people who can be 'out and 'proud' about their hairloss, but for many people it is always going to be awkward, a bit depressing etc.
There are positive aspects to it, of course. This one is age-dependent, but if you are middle-aged and upwards it is quite possible that even without a medical condition your hair will be getting a bit crap and you might be getting locked in to that horrible cycle of hair colouring. That's expensive and artificial and time consuming, so the one-off expense of the all-time artificiality of a wig isn't that different from what a lot of older women do anyway -- and it can produce nicer looking results!
(Well, not really a one-off expense -- you need a new wig every year or so, but still, compared with hairdresser appointments, it doesn't need to be more costly.)

Another good thing about the tendency for a lot of non-baldy women to spend time and money colouring their hair (and doing other things to modify its appearence artificially) is that we are actually quite used to seeing someone's hair looking suddenly different, so a new wig might not attract as much attention as you fear it will.

I'd like to second the recommendation of the Simply Wigs website. Of course the first and perhaps the second time that you buy a wig, you will want to see a consultant and get advice. But beyond that an online purchase can work. Simply Wigs are very helpful and friendly. And you can order two or three wigs to try on, and return th ones that aren't right for you. Plus you get a free Ferraro Rocher choc with earch order.😊

The cheapest wigs available are naff, but there are loads of mid-range ones that are very very good. No need to shoot up to the top of the range. Think hard about comfort when you make a choice. Some wigs are constructed for greater comfort. The biggest discomfort I found at first was that the wig felt HOT, so it is good that you are exploring wigs at this time of year. Over time, I think your body adjusts and regulates your head temperature better -- thee days I'm more likely to feel cold without my wig than hot with it. In the house I often wear a turban-style head cover. There are lots of nice ones available on websites that also sell wigs.

Sorry, i missed that you live in a hot country. The warmth will be uncomfortable, but I do think that improves with time.

@Random789 A free Ferrero Rocher?! Why did nobody tell me until now?! 😂

I was definitely thinking about the expensive ones and wondering if anything less would be obvious. I think until I see some of them in real life I just won't know – I can't get a sense of anything looking online.

And comfort is big given where I live (it was 27 degrees yesterday, to give you a sense of things). I've been learning about all the different types of caps and wefts and features - who knew it was so complex?!

I'm also wondering if I need to get rid of the hair I have left to make it sit right / not be as hot. Buzzing it all off feels very extreme and I'm not sure I'm ready, but I'm also not sure I want sweat running down my face!

I have such a busy brain at the moment – thank you all for letting me download at you!

I have alopecia due to cancer treatment and ongoing meds. When I got fitted for my first during chemo the stylist, who has alopecia, told me that it’s a wig in its box and your hair once it’s on your head. I found that really helpful.

I’m four years in now and I’m quite brazen about my large collection, but I remember what it was like to think everyone ‘knows’. A decent wig fitter will choose a style close to your hairstyle and you can move on to other styles when you feel ready. Look at Valentine Wigs online, as they often have good deals, and there are some really good instagrammers I follow, like Bald Mother Tucker.

@QueefofSheena that is a helpful reframing, thank you. I love that you've got a large collection to choose from, too – that's the playful side of this that I'm trying to keep in mind. Maybe this could be fun one day 😊

I saw someone talking about needing to replace their wigs every six months or so – how do you know when it's time to get a new one (other than wanting a change)?

Re 'buzzing your hair off' , there are some circumstances in which it can feel quite good. When my alopecia was pretty clearly morphing into universalis I did start doing that and it felt a bit like taking control. It also spared me from the horrible messy awfulness of watching my hair fall about me.
But in terms of comfort, if you don't have a lot of hair I'm not sure that it would make much difference to how the wig sits or feels. And for sporty activities where you might feel like a headcovering of some sort, rather than a wig, is a more practical solution, having a bit of hair might feel useful. Just to give a bit of body under the covering, or a trace of hair poking out here and there.
I do find caps/hat/etc useful as an alternative to a wig for some activities, and there are lots of sporty-type coverings that are designed for coolness and comfort. When googling for solutions, don't just go to hairloss resources. Sports clothing shops can be good. And I also look at fashion websites for Muslim women bcause of course they often have a wide range of headcoverings, including some that are designed for sport.

Re how frequently you need to replace wigs, I think if you look after them better than I do they can last for years, especially if you keep them for 'best'. Once you have an older wig or two around you might be able to use them for going to the gym, answering the door to the postman, etc, and keep the newer one for work, etc.

I really appreciate you taking the time to respond to all this, @Random789 – thank you so much.

My remaining hair is pretty long, so I think a first step would be going shorter at least (make it easier to fit underneath, if nothing else!)

Ooft, what a rollercoaster. It helps so much to hear from people's experiences, though – I feel a little better already just having read everyone's responses.

One step at a time, right?

My daughter (almost 11) has worn a wig full time since she was 6 due to alopecia areata. The school knew (so perhaps tell your bosses?) but she just went into school after the holidays wearing it - nobody said anything apart from "oh your hair looks nice" people are EXTREMELY accepting overall 🙂

Cutting what left of my husbands hair was a real turning point for us both.

That said, he still doesn't like looking at before photos of him. Personally I think he's gorgeous. He always has been as always will be. It surprised me how little it bothered me or how little I thought about it.

Have a look at sites for orthodox Jewish women too. Married women cover their hair and a wig is quite a common hair covering for them as well as turbans, scarves etc. you can even get under caps that have padding and made it look like you've got more hair under your turban or scarf.

My lovely older sister has alopecia. I remember going on holiday with her once and when I got back to the room she had just gotten out of the shower. She could have choosen to cover her bold head or her naked body - she choose her head and I was so sad she felt more embarrassed about that.

My sister used to wear a wig but it became too hot and itchy for her. I was quite amazed no one at her work ever said anything to her when she once changed wig styles. I am guessing people realised but thought better not to say. She didn’t say anything. She then moved to bandanas when she lost all her hair. She still choose not to say anything to anyone which was fine - her choice.

I took her to a colour expert recently who showed her what colours suited her - and she recommended choosing bandanas in colours that suited her and planning her outfits around the bandanas rather than the other way around. She now looks totally amazing - I can see her old self in her eyes now.

It has taken about 5 years but my sister is totally comfortable with herself now. The only thing is when she meets people she has not seen since she stopped wearing her wig she knows people worry she is having chemo so she just tells them upfront she has alopecia.

good luck with your journey

Hi OP, I wore a wig for four years due to Alopecia Arearta, I had a topper for a while then switched to a wig, I actually preferred the wig as I could take it off and have a proper shower and shampoo my scalp which felt a lot cleaner. My work colleagues mainly knew about my hair loss and were very supportive when I switched to a wig. People who didn’t know really didn’t know even though I thought it was obvious. I know this because my bio hair has grown back this year, it’s long enough to go without a wig but much shorter than my normal style and quite a few people have commented on my new hair cut! I always disclosed I was wearing a wig if anyone commented on my hair but I think it was a nervous thing I’m sure it would have been fine just to say thanks and then move on. Whatever you’re comfortable with I think is fine in that situation.

Once I found a supplier I trusted (I can send you the details in a message if you want) I found wigs pretty good in the main. Estetica, Ellen Wille and sentoo were my favourite brands. The gym wigs with the soft hair band from Headscarves by Ciara a nice too and wefted at the back so were a bit cooler, they may be a good option for you living in a hot climate. A tip would be to buy the headbands from there too as the regular ones from Amazon or whatever are too tight and will give you a headache.

I think there is some great advice on here, I also like Alopecia UK products and services group in Facebook so you could think about joining that if you haven’t already, it more about tips and practical solutions than it is about feelings and outlook which is in a different group. I think it’s very difficult as wigs just aren’t the kind of thing many people know much about unless they need to know and those people are few and far between and often well hidden. Xx

I lost all my hair at 19 (several decades ago) although I had a pattern of relapsing and remitting for about 20 years before it gave up the ghost more or less completely. When I was younger I shaved and went naked as wigs were so awful then, then I had maybe 10 years of wig wearing, since covid I’ve got used to completely shaved again. I do have a big wig collection but I wear one maybe once a week now. If someone comments on my hair I say ‘oh, thank you, it’s a wig, I love this one too’.

I prefer synthetic, the thought of human has always given me the ick for some reason. I look after them and they last me well, although you will wreck them quickly if you let them rub on something like a high necked fleece. You will be entitled to them VAT free - your GP can give you a letter. Valentines Wigs and Simply wigs are good places to buy online, with regular special offers, though it’s good to get your first one in person. I have never worn one to exercise, swim or sleep.

After I lost about half my hair the first time, I decided to buzz because I wanted control. I wanted it to be ME that did it, so it looked intentional rather than look like maybe I hadn’t noticed I was half bald, if that makes sense.

You know you need a new one when it loses its movement and starts to feel stiff - or the ends start to frazzle. I also have a lot of hats, from fedoras to cashmere beanies. I tried wrapping but constantly worried about it falling off. I’ve never had a wig fall off though, and I don’t use anything to attach them at all.

There is life after hair loss :). BaldMotherTucker on insta has loads of styling tips for wigs as well.