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.

Hi op

My experience with wigs is that they are hot an unpleasant but I think that is partly not being able to afford a really good one and partly feeling forced to wear it to cover up. I definitely found they felt and sat better when I cut off the straggly hair underneath. It felt silly even at the time just how emotional I was about cutting off this long, greasy, straggly mess I’d been hiding for years

Keeping it shaved short was actually a huge relief once I got there though.

I’ve been variations of almost completely bald for 20 years and used to obsessively hide it.

Since I stopped I have had women approach me on the bus and in shops to whisper that their hair is a wig and they wish they had the confidence I have to go out without. It’s more bloody mindedness tbh!

I also have randoms come and share their cancer journey with me and look with pity at ny daughter.

It’s by no means an easy choice but I think the reason so many are so evangelical about it is because of how liberating it is to feel like you aren’t hiding.
The fear that somebody would spot my wig or of taking my hat off and having a shock moment far outweighed the reality of doing so.
I couldn’t count the times I sat sweltering under a hat in a cafe or someone’s house because I couldn’t face the reveal moment.

That said before I reached this point nothing could have winkled me out of hiding, like a pps sister had I been caught out naked I would have covered my head before my genitals. Even the thought of someone seeing my head made me die inside (I was a teen when it started)

These days it’s hard to even remember just how naked I felt the first time I deliberately exposed my head to the world despite the fact I still have reveal moments all the time I am so over it now that it’s the other person who has to deal with their feelings not me.

For me hiding it affected my mental health much more badly than the hair loss itself and freeing myself from hiding was one of the best things I ever did.

That doesn’t mean you should feel ready if you don’t because it’s a very personal journey and when my mum tried to push wigs and other ‘solutions’ on me it really made it worse not better

I think the last step on the journey for me is an elaborate head tattoo. I already wear big dresses and huge eye catching earrings but I think the final acceptance is a head tattoo that gives me shape where the hairline should be as I found that changes my perception of myself so much

Oh my goodness.

@Iamclearlyamug, @Twizbe, @ittakes2, @ilovecherries , @SomePosters, @RemindMeAgain I've learned so much just from these posts – thank you so much.

Bandanas and headscarves aren't something I've ever really explored – they've never suited me in the past – but maybe they're the best place to start.

Headscarves by Ciara has some amazing stuff... the hats that look like scarves!! The gym headbands with hair built in! I'd never have found this on my own. @Random789 if you'd be up for sharing the supplier you trust, I'd appreciate that. I'll take all the help I can get at the moment!

@ilovecherries I feel a bit odd about human hair, too – I don't know enough about the ethics of the trade yet. And YES to buzzing "so it looked intentional rather than look like maybe I hadn’t noticed I was half bald, if that makes sense." Makes total sense, and that's the concern I've had – people thinking I'm wandering about obliviously tufty.

And @SomePosters – what a process you've gone through. Thanks for being honest. It makes such a difference to hear the evolution you've had, rather than the "It was all so hard but PING! Everything's great now!" perky success stories I've seen online. There's a LOT of middle ground between those two places and it's not a straight line from one to the other.

My MiL told me that when she first lost her hair (in her teens) she felt like taking her own life. She thought she'd never marry or have a family. She thought she'd never do anything. She's spent thousands over the years trying to find a cure. I'm not sure if she's reached a point of acceptance yet or not. It must have been even harder watching it happen to her son.

I'm not sure where husband is on acceptance. He doesn't cover it (except for practical reasons like sun or cold) but it's harder for men to hide it I suppose. He doesn't like pictures of him pre alopecia being out. I think it's helped him that our 3 year old adores Caillou and Matt Lucas because "they look like daddy".

@dumbstruckdumptruck my first one lasted around a year before it frizzed. It was expensive as I went to a wig boutique for a proper fitting. The actual wig was quite overpriced but it was worth it for the service I got when I really needed someone to be kind and understanding. Since then I tend to buy Rene of Paris, Noriko etc. and shop around wherever is cheapest. I don’t bother with human hair, mine are all synthetic. My current everyday wig cost £60 in a sale, about the cost of a haircut.

Youre right, it is a long journey although it often is a ping moment inside but even when you’ve done your side of it that’s doesn’t mean you don’t have to help strangers process their emotions

From the cancer survivors who think they are empathising to the woman working in the post office who told me ‘you are SO brave to leave the house looking like that’
when all I wanted was my parcel it is a journey and people do treat you differently because the perceive you as ill.

Honestly though the thing I find most offensive is how many people assume I do it on purpose!
Like I take clippers to it and then immac patches in… I don’t know what they thought or didn’t think!
Apparently I’m supposed to take it as a compliment.

I hope you’ve found some solidarity here and when you’re ready I would urge you to cut what’s left short, I clung on so much longer than I should have to hair I would never have let anyone see! It was in terrible condition from being covered all the time and left me with hands full of all these long strands every time I washed it
It was so freeing to let that go and it made wig wearing so much more comfortable. Also when I washed my hair I wasn’t aware of what was coming out any more as it’s just specks so no more constantly cleaning the plug hole!

"The woman working in the post office who told me ‘you are SO brave to leave the house looking like that’ when all I wanted was my parcel"

Holy moly, people are unbelievable. I'd be tempted to say "So are you" 😎That's a lie, I'd gawp at her disbelievingly and walk away close to tears.

I wonder when and how perceptions of hair loss in women will change – or if they will at all.

In the meantime I really have found solidarity here, and in ways I hadn't realised I needed.

Thanks again. Mumsnet can be a pretty awful place sometimes, but then sometimes I find a thread and a bunch of women like all of you and I remember why I stick around.

Yes, buzzing it off immediately took away the horror of handfuls of it everywhere. I had long waist length hair at 19, was in my second year of uni, and lost half of it over less than a week. Huge patches. It was horrific. When I was given a prescription for an NHS wig I really did cry, it was so awful. My then boyfriend helped me wet shave the rest away. And while he was in many ways a complete arse, I will be forever grateful for the fact he looked at me after and said ‘Christ, that’s so hot’. He encouraged me to go right out with him that night to a ‘disco’ (anyone remember them 😀) in the student union. It wasn’t an easy road but he set me up to succeed really. My DH has seen me bald since day one. The one thing I won’t do is remove a wig in front of anyone but my DH and adult DD. Anyone can see me bald. Anyone can see me with a wig. But that moment of transformation from one to the other has always felt intensely personal.

I would suggest getting wigs from Israel. It's how a lot of Jewish women get away with not showing their hair but looking like they are. Very clever and very high quality.

I do tend to wear make up when going bald, and I always wear glasses and earrings on bald days, otherwise I do feel a bit bare. When wearing hair, I usually wear contacts.

Wigs are so in these days - even for people with great hair already. I don't think it has the stigma of the past at all. But obviously the wearer knowing why they're wearing the wig is what makes the difference.
Theres a much greater understanding of alopecia now than in the past and huge sympathy and support for sufferers from the average person. Get yourself some gorgeous wigs. Wear them with confidence and it will be a seven day wonder then just part of who you are.

I know someone who was losing her hair to alopecia. She was worried about how to let people know without exacerbating her upset. She ended up circulating a message at work, in her family WhatsApp group and her neighbourhood WhatsApp group with a message along the lines of: ' I'm suffering from alopecia (followed by an explanation of what it is). It's a really upsetting time for me and I'm starting to look into wigs. Does anyone happen to know where I can find good ones?'. She wasn't actually looking for tips- she just wanted for people to know without having to tell them face to face and to preempt unwelcome comments. In her case it worked well. Incidentally she realised wigs weren't for her so the message avoided situations where people assumed all sorts of things.

So many lovely and informative posts on this thread. Thank you everyone. And thank you dumbstruckdumptruck for starting it.

Great thread - thank you for sharing
Have a look at this for tips and ideas
www.simplywigs.co.uk/blog/category/we-that-wear-wigs/