How to manage permanent hair loss, style-wise tips needed

[WordsearchKween]

Not sure if this is the best place for this but wasn't sure where else would be better.

I'm devastated to be loosing my hair & it's not coming back. Scarring alopecia, autoimmune condition.

Not sure how to style this. Toppers, hair bands, scarfs, hair styles, hair accessories that are gentle on my existing hair.

Not at the wig stage & not sure what point nhs supports with the cost of wigs either.

Every search I do online comes back to chemotherapy headwear. This doesn't feel appropriate on multiple levels and not helpful in helping me feel 'normal' to the outside world.

Can anyone point me in the right direction. Suitable looks for casual days, smarter evenings socialising & work if possible.

Thank you.

How much hair do you have? I am missing a band of hair where my fringe was and I style mine forward, and try not to walk into wind!
I have hair thinning in other areas due to peri so I use Bed Head Small Talk - it’s in a round purple container with a yellow spout - to thicken, and you need to blow dry it as heat activates it.
Ive seen some lovely toppers on TikTok, and I’ve also seen a hair system (like a piece of hairy swim cap) that men have put on, and I don’t see why it couldn’t be used for women too.

I think it depends how "obvious" you want to be... ultimately, anything that is not a full head of hair will be noticable and it is up to you how you deal with that... I lost around 70% of my hair when I had radiotherapy for my brain tumour, at the age of 30. The bottom bit of my hair stayed and I looked like a monk with a mullet. I wore bandanas, hats, loose scarves etc initially (including to work for an internal interview) and people commented and stared as I didnt look like me, and I didnt feel like me. If you allow the lack of hair to become part of you then you will likely be more able to "live" with styling it (although be careful with using too much stuff on it, as it could make more fall out)... but I know that is easier said than done. If you were feeling really brave then you could shave it all off? In many ways that would look better than having obvious hair loss. I had never really done much with my hair in terms of styling (or make up generally) so I didnt want to stand out, whereas if you are more of a risk taker generally then it would be easier (but still devestating) but it sounds like you arent as otherwise you would not have made this thread.

Ultimately, I went down the wig route and that was what made me feel me again. I know you say you arent there yet, but I losely tied up my hair and wore a bamboo wig cap (these are esssential to not end up with an itchy scalp) then my wig. As my hair grew back, I only wore the wig for about 6 months, but in your position I would consider investing in one now given it is permenant. I recall at the time wishing that I had sorted out a wig before "it got too late" but my medical team had said I wouldnt lose much hair (they said I would be able to use headbands) so I hadnt prepared in advance.

I saw a wig lady in my NHS hospital and she was honestly fantastic. I just cried on her and showed her photos of me with hair and she let me try on different ones. The wig I got was darker than my actual hair colour, but just having hair again made so much of a difference to my existence and I can look at photos of that time when I wore a wig (my son was 6-18 months at the time, so ALOT of photos were taken!) with happiness whereas I dont like photos where I didnt have my wig on.

Also, I am really really sorry you are losing your hair. I dont think anyone who has never been through it, particularly as a woman, really understands how devestating it is to how you see yourself. I am also sorry that I cant give you more practical ideas other than say I tried a lot of them, and the only thing that made me feel me again was a wig. I hope you find a solution soon.

My loss is fairly diffuse but worst on my vertex & crown I'd say. I've cut my hair to shoulder length to help hide its thinness, it's lost about 60-70% of its original volume due to the loss & change in hair type (used to be thick curly, now thin wispy). No full bald spots yet that I've found but gradual general thinning over the past 3-4 yrs looking back, loss has accelerated recently.

My parting can only be in one place now, it's widened all over but everywhere else is much worse & shows a lot more scalp.

My crown is really thin & shows a lot of scalp too that's hard to hide. I'm really conscious of that area especially when ppl are behind / overlooking me (in queues, at my work desk when someone is stood above me talking are common panic points!).

My condition means the hairs are weak at the roots & easily pulled out, I'm not sure if they'll grow back or already stopped. So the option to blow-dry is sadly off the table, advise given to me wss to avoid heat. I've also been told to avoid all things that might irritate my scalp so I'm holding off new chemical products at the moment to be cautious.

So I'm looking for things to wear I think, but just finding nothing suitable. Everything is for chemo patients, I'm really surprised there's no product websites or ranges targeted at alopecians for these earlier transition stages. It makes me feel even more alone facing & going thru this.

@brainstories5678 thank you for sharing, you are right I am not a head shaver! Because my hair was always volume-ous & big, it's been a massive part of my look & identity all my life.

I also dread windy days like only a hair loss sufferer would fully understand!

I have med-induced alopecia following cancer treatment and my bio hair is thin and patchy. I’ve been wearing wigs for about 8 years as they work best for me. If you want to look into it I found the NHS scheme really expensive as wig suppliers who took the voucher charged way more for the same wigs I could get much cheaper elsewhere. Look at brands like Rene of Paris for inexpensive wearable styles. You get the VAT off wig purchasers from anywhere as you will be medically exempt.

There are lots of hair loss instagrammers, I really like hairlossgirlboss, her bio hair is similar to mine and she demonstrates different options including caps and fringes.

@QueefofSheena that's really interesting. I have so much to learn.

Do all ppl with alopecia automatically get wig vouchers, or is it only after a certain % hair loss? How do the wig costs compare with NHS voucher vs buying direct from a different suppliers, and how do you not pay the tax?

There are zero support groups anywhere near me to meet ppl in person dealing with this.

I'd recommend going to a wig boutique for a fitting and try some on. Take note of the styles you like and the brands then compare with online. I mainly use Valentine or Simply Wigs but there are lots of suppliers.

The first wig I bought was after a fitting and even with the voucher, that I'd paid around £70ish pounds for at the hospital cashier, it still cost me over £200. I replaced it a year later online for £150 so I've found it a lot cheaper to shop online. There are loads of videos on youtube with try ons and reviews. I mainly wear Noriko/Rene of Paris but there are lots of good brands.

When you buy online you make a VAT declaration, its a bit like the prescription charge waiver. Once you've bought from a company they usually deduct the VAT automatically for future purchases. I wear my bio hair in a ponytail at home but even when my growth is reasonable I look a million times better in a wig and no one talks to my hairline

There's a very supportive online community. I just read rather than comment much but on Instagram there's relightalopecia and baldmothertucker that come up a lot and are in the UK Baldmothertucker demonstrates loads of wigs and eyebrow transfers etc.