What's the main piece of advice you would give to someone newly diagnosed with alopecia?

[SimoneHU]

Hi everyone! This community is almost reaching the 500 followers milestone! It would be great for you to get to know more about each other by sharing your 'I wish I knew' experiences. I think the newbies would really appreciate as well

[Foss]

Hello SimoneHU

This is a difficult one as this affects us all in different ways. Age, attitude, gender. Our psychological health is also so important and is only just being addressed.

My scalp was very sore to begin with so I invested in some very soft caps which I wore under Buffs. Scarves just made me feel awful and they move and slip. Coping with everyone thinking you've had chemo is difficult, you do get used to 'the sympathetic smile'.

When/if you decide to wear a wig make sure you get proper advice from a professional who can advise on type, style, colour etc. It will be an expensive outlay even with the prescription, if you are lucky enough to get one, but the right wig makes all the difference.

I don't always wear a wig and coming to terms with people seeing me some days in a Buff and some days in a wig is not easy. Vanity I know, but why not.

I hope you get lots of replies as its a very important issue and good to get a discussion going.

Thank you

Foss

[SimoneHU HealthUnlocked in reply to Foss]

Hi foss,

Thank you so much for sharing your experience and getting this conversation started! Hopefully others will jump in and show the different ways in which people can be affected after diagnosis.

On what you said about the wig, did you start off by wearing it everywhere and slowly felt more confident without it?

[Foss in reply to SimoneHU]

Hi SimoneHU

No not really. When I first started wearing it I felt very self conscious as those who had only seen me in a Buff would know it was a wig and vice versa. That didn't bother me amongst friends, but in social situations, meetings etc people often did a double take when they saw me with or without the wig. I guess I just feel uncomfortable with people knowing that the ' Hair ' is a wig.

Foss

[perdido]

Hi Simone and all!

This is a bit more of a "I'm so glad I knew" than "I wish I'd known" but hopefully that's ok...!

For anyone new to hairloss (or this forum) I just wanted to say that – if that you decide you want to try any kind of hairpiece/wig – then going to the places that black (African Caribbean) women get their wigs and extensions is a really good place to start. I'm black myself so at least when I lost my hair – utterly traumatic though it was – I was, like many other black women and girls, already used to experimenting with a variety of extensions, braids, lace front wigs, and hairpieces. So I knew where to get myself a wig and where to get it cut (that last bit is really important!!)

In general, you get a lot more wig for your money (a better one) from black beauty supply stores and websites, than you do from dedicated hairloss businesses. I've bought various very believable looking lightweight wigs and hairpieces for less than £30 via this route. Online is, predictably, generally cheapest. If you're starting with your first experiment with wearing a wig or topper, I'd suggest buying a low cost unit (if buying online, I use Paks and/or Paul's Hair World – no affiliation to either!) and then taking it to a hairdresser to get it cut. If you're worried about trying on a wig at a hairdressers (and a lot of us are), a local mobile hairdresser who'll come to your home might be better and cheaper.

Finally, if you find a hairpiece online that you're interested in, the photos are often unhelpful. I always make a note of the brand and name (and maybe colour too) and search under google images or YouTube. Nine times out of ten you'll find other people have posted photos or video footage of themselves wearing the unit, and that's been massively helpful for me in terms of making the right choices.

Apologies if this advice is already covered elsewhere on this forum - I'm fairly new and haven't posted before so when I saw the call for suggestions I thought I'd finally say something!

Best wishes all x