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Any alopecia people out there?

(48 Posts)
AlphaNumericalSequence Thu 25-Oct-18 07:30:02

I've had alopecia for decades, on and off. Recently my alopecia has become much more aggressive, evolving from the patchy sort to universalis.

I've had steroid injections in the past, and I am just beginning diphencyprone treatment - a fun therapy in which the scalp is painted with a highly allergenic substance in order to persuade the wayward mercenaries of my immune system to call off their attack on the hair follicles and beat up the diphencyprone instead, causing blisters and redness in the process. The success rate is pretty low, but I decided to give it a go.

I just wondered if there was anyone around who wanted to have a moan-in about this condition.

In particular I am finding it harder than I expected to cope with the loss of eyebrows and eyelashes. The cosmetic aspect of that loss is pretty awful. I feel like a space alien. But it is also very uncomfortable: my eyes are so exposed to dust, wind, sweat.

I've just ordered some specialised sunglasses, that have padding around the lenses to keep out grot and wind. Pretty sure they will make me look freakier than ever. Ah well.

SprinkleOfInsanity Thu 25-Oct-18 07:46:22

Have sent you a PM 

AlphaNumericalSequence Sat 27-Oct-18 07:33:40

I've just remembered that when I was a mumsnet regular with a username familiar to loads of friends here, I was very cagey about mentioning my alopecia. It seemed like something to be shamefully hidden online just like in real life, and I valued the opportunity to talk to people without having my hairloss on display.

So I just wondered if that was part of the reason for there not being activity on this thread (apart from the very kind and helpful direct message from SprinkleofInsanity) -- in addition to all the usual reasons for on-thread tumbleweed.

Now no one knows me on mumsnet so I can flash my baldy scalp freely. But lots of users might not want to bring their alopecia into their online identity here.

Does anyone remember AmateurArseDoctor, a mumsnet poster of many years ago? Her username was a namechange that she originally made in order to post on an embarrassing subject -- her daring removal of her own piles.

Her thread was very funny, a massive hit, and she became very popular under that name, which she wore very proudly from then on. It
always struck me as part of the weirdness of online life that her sheepish pseudonym morphed into her dazzlingly successful public persona. grin

Don't mind me -- I'm just happily wittering on alone here, because the dog is bored of listening to me. grin grin

Meet0nTheIedge Sat 27-Oct-18 08:03:06

I've posted about mine for years, under whatever names I've been using at the time, however it has largely gone into remission for the last few years, also it never got as far as universalis, at its worst I lost about a third of my head hair. My eyebrows are more or less gone and I do struggle a bit with sweating during exercise as a result, I wear contact lenses so it's really not good to get sweat in my eyes. I have to wear a thick headband. It's also a problem gardening in hot weather. My lashes have stayed put though.

I've tended to post on threads where people have just found their first patch and are seeking early help, as that's where my experience lies, I didn't get as far as needing steroid injections (I had ointment). I hope your new treatment works and isn't too painful.

AlphaNumericalSequence Sat 27-Oct-18 08:36:37

Thank you. smile

Yes, sweating is difficult for unprotected eyes isn't it. And I can imagine that using contact lenses makes it even more of a nuisance.

I have to wear a wig now and I find exercising at my gym a problem. It is too hot to wear the wig, but if I wear a cap or scarf I feel like people are judging me for trying (and failing!) to look stylish. I want to say: "I'm not wearing this for fashion! I have ALOPECIA!"

I wish I could just go into my spinning class unabashedly bald -- then I'd have an advantage over the hot 'n' hairy.

Meet0nTheIedge Sat 27-Oct-18 08:45:05

They probably aren't thinking that at all, but it's hard to stand out from the norm and not feel self-conscious. I struggled with swimming when I had head hairloss - most of my loss was at the back and sides so hidden somewhat under the crown hair when dry but looked awful when wet - my hair is dark and skin pale so it was very noticeable. It was when my kids were quite young and loved swimming but needed an adult in the pool at all times. It has far more consequences than the purely cosmetic when it puts you off sport and exercise.

AlphaNumericalSequence Sat 27-Oct-18 08:51:31

It must have been hard for you, coping with hairloss when your children were at an age to need you in the pool with them. I'm glad that your head hairloss is better now.

I have (or rather, had) dark hair and I know what you mean about the contrast. Also, I've been used to having quite visible eyelashes and brows because they were dark. I guess if you are very fair there is cosmetically a bit less difference between having and lacking lashes and brows.

On the upside, my black leg stubble is gradually disappearing.

Meet0nTheIedge Sat 27-Oct-18 08:54:18

Yes, there are upsides, my once hairy arms are completely smooth now smile

JellySlice Sat 27-Oct-18 10:16:13

Another browless goddess here.

It was extremely difficult coming to terms with my new appearance. The hairloss coincided with moving to a new area where I did not know anybody. I think that made things a bit easier.

Nobody ever said anything. I didn't notice any staring. After a few years, new friends etc, I felt confident enough to mention my brows (summer, sweat running, you know). The reactions were always either "Yeah, I'd noticed. I did wonder." Or "Oh, yes. I'd forgotten you don't have eyebrows." Or "You don't have eyebrows?! When did that happen?"

TBH it felt better to have it out in the open. Until then, and TBH since then, the only people who mention it are children. Typically sitting across the table from me during playdate supper:
Jelly, why don't you have eyebrows?
I was ill and they fell out.
Will they grow back?
Does it bother you?
Yes, but I'm still me, this is the face I've got, and I'm going to love myself as I am.

JellySlice Sat 27-Oct-18 10:18:17

Also had thick, lush, dark brows. My dc, who don't remember me any different, find old photos of me weird!

AlphaNumericalSequence Sat 27-Oct-18 11:01:51

That all sounds very positive.

Children are great about these things, aren't they. I can remember a friend's child aged about five saying something to me about my hair having holes in it grin

I've been thinking about maybe having some sort of understated eyebrow tattooing, just the smudge and suggestion of a brow, but I dunno, perhaps it better just to let it be.

My sister, also a universalis, had hers done and it worked out well.

Meet0nTheIedge Sat 27-Oct-18 11:11:55

I paint mine on, after 10 years practice I am pretty good at it and am grateful for the heavy brow trend as it means there's a huge range of products out there. 10 years ago there were about 2 eyebrow pencils in our branch of Boots. It does come up in conversation from time to time.

Meet0nTheIedge Sat 27-Oct-18 11:14:30

I am also considering tattooing, but I would want them totally natural looking, not squared off ends, arches etc which look made-up, I do wear make-up but not all the time (apart from brows).

AlphaNumericalSequence Sat 27-Oct-18 11:21:33

Yes, the new eyebrow fashions, while weird, do make it easier to use make-up to create brows. More products available and more acceptance of a slightly artificial look. I too dislike the big squared-off effect. I make a faintish line of 'brow pomade' (!!) and then use a very fine eyeliner to make a few tiny faint individual hair marks.

But I'm not really a make-up person and I'd like a backgroundy faint tattoo line just so I could feel normal-ish without an effort -- and then do something extra when I was in the mood to.

Kewqueue Sat 27-Oct-18 11:22:53

I have lost about a third of my hair according to my dermatologist (I think it's more) but my body hair and eyebrows are still going strong! Is this normal? It's making me think that maybe it is reversible. (Dr says probably not). And I think it has something to do with low ferritin too (Dr says not). My Dr is very negative in general!

I know what you mean about not wanting to look freaky though - I look weird without hair (and my hair loss is mainly around the front and crown so I feel like I have some sort of weird monk vibe going on...)

Meetontheledge - couldn't you wear a swimming cap in the pool? It wouldn't look out of place. Actually in our pool you have to wear one unless you are totally bald.

AlphaNumericalSequence Sat 27-Oct-18 11:29:22

I do think it is quite normal to lose a lot of head hair without losing anything elsewhere in the body. This was my situation for years and years, and I was surprised when it began morphing into the whole-body form.

I think it can reverse itself, or just become temporarily absent or very mild for many years. Or it can just stick around.

The unpredictableness, the impossibility of working out why it has suddenyl got you by the throat after years of remission, is part of what is so distressing about it. Sometimes just understanding can make you feel more in control. But the triggers are still so poorly understood. sad

JellySlice Sat 27-Oct-18 12:08:07

I'm lucky, I think, in that having children forced me to come to terms with my 'new' self. It is very important to me to model being comfortable in my body. Children are so heavily exposed to body-shaming that I worry how they will cope with being in any way different.

I know what I'm like. I've been struggling with depression on-and-off most of my life. Had I not had to survive for my dc, I think my (already poor) self-image would have been totally destroyed. Treating my depression has helped other things. CBT can be applied to bald patches, too!

Meet0nTheIedge Sat 27-Oct-18 15:09:30

Kew - I was too scared to pull on a tight swimming hat in case it pulled out lots more hair, I remember if was just coming out in handfuls every time I ran my fingers through it. I couldn't bear the DCs playing with it either, and didn't have it cut for a very long time as I didn't want anyone touching it.

Kewqueue Sat 27-Oct-18 15:20:09

Meet - I can understand that. Those vinyl (?) ones are terrible for pulling hair. We use the fabric ones - they don't pull at all.

Meet0nTheIedge Sat 27-Oct-18 15:30:16

I didn't know about the fabric ones back then, we did later use them with DS for years in swimming lessons though (he has ASD and thick hair and couldn't bear the tight ones). DD is now a competitive swimmer and a dab hand at bundling her waist length hair into the silicone ones but it was awful trying to get them on DS.

FortniteIsTheNewCrack Thu 01-Nov-18 10:40:51

I have alopecia areata as part of another condition, I have posted about it previously under different MN names.

An upside of the cold weather is we can wear hats smile Agree also that the increase of make up for eyebrows makes things better. Mine are patchy rather than total loss, so I use powder to fill them in. One thing that helped is getting them threaded so they were narrower than my "real" ones so filling was less obvious.

If you had told me a couple of years ago I would be getting my eyebrows threaded, I would have laughed. I never wore make up and wasn't too fussed about my appearance tbh, so I was very shocked how hard I found the hair loss. It was actually really distressing.

I used to have very thick, very long hair and it fell out fairly gradually. I went from waist length to a bob to reduce the weight and hopefully shedding, but it looked even more patchy. I then got a pixie and it looked it even worse so I shaved it and left enough for a Mohican which I dyed blue 😃 I'm not working at the moment due to my illness so it actually feels very liberating, if slightly mid life crisis-y 😂

Before this I think I bought every hairband, tie and scarf available! Another benefit of a shaved head is that a headband looks like a deliberate "fashion" choice as part of a look. That sounds wanky, sorry. Like rockabilly maybe?

The best scarfs and hats I found were Deresina, just in case anyone hasn't heard of them. They are sold on Amazon and do a soft sleep cap as well, it didn't help my loss but it was less distressing than finding all the hair on my pillow.

I don't know if that is helpful to anyone else but I hope so. It is hard, especially the past where it is actively falling out. My MN emojis aren't working but flowers to everyone!

FortniteIsTheNewCrack Thu 01-Nov-18 10:44:22

Kind of like this. But I'm not that pretty, sadly 😃

AlphaNumericalSequence Thu 01-Nov-18 16:45:25

Shaving into a Mohican and dying it blue makes you my hero! I wish I had the nerve/style/pzazz to have done things like that over the years.

I remember once, when my hair loss was patchy, I was on a plane coming back from hols and being my normal patch-hiding self (holding myself at angles that hid the loss, or scooping my hair around to cover it, etc etc.) when the woman sitting next to me just lifted her hair off -- it was a wig and I hadn't noticed. She was more comfortable without it on so she just did what she needed to do and didn't appear to give a damn.

I admired her so much, so lovely. And recently in the gym there was a woman with patchy loss who had shaved the remaining hair really short. She looked absolutely fine, even though she looked like someone with hair loss.

She was completely relaxed about it, no one else batted an eyelid about it. And there was I wearing a headscarf (or my wig, can't remember) and feeling too hot. I'm always all scrunched up into an apology in human form, for daring to exist with alopecia and there is no need to be!

Thanks for the tip about Deresina. I will take a look.

JellySlice Thu 01-Nov-18 17:51:20

she just did what she needed to do and didn't appear to give a dam


My hairloss appears to have stopped. But I have promised myself that, if it starts again, gets worse, I will waste no time or emotion on being miserable, embarrassed, hating myself. No. I will embrace it. I will crop my hair, dye it bright pink, shave it off, wear huge earrings. Rock it. Hon y soit qui mal y pense!

BTW I realise that I cannot bring myself to call it by the a-word. But I forgive myself for not being Superwoman grin

Also BTW hats rock!

FortniteIsTheNewCrack Thu 01-Nov-18 18:08:24

Omg I just did the longest post and it's bloody disappeared!!!!

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