Krista

Age at interview: 23

Age at diagnosis: 22

Brief Outline: Krista had very rapid hair loss from her scalp, arms and eyebrows which lasted for about 4 months. She wore a wig and worried that her young daughter wouldn’t recognise her. Krista’s hair has now regrown and her confidence is slowly increasing.

Background: Krista is 23 years old and works in a pub. She lives with her partner and 2 year old daughter. Her ethnicity is White and Asian.

More about me...

Krista felt a bald patch at the back of her head one day whilst she was at work. At first she thought it was eczema but, over the next few days, she found another patch and saw that her hair was falling out in clumps. Within 6 weeks, Krista had lost 90% of her hair on her scalp in addition to her eyebrows and some hair on her forearms. She used a steroid cream and bought a wig which she wore for several months as well as having her eyebrows tattooed on. Krista thinks the triggers of her alopecia could have been a combination of stress and changes in hormones from medications. Last year, her partner had multiple surgeries and they moved house. Krista was also caring for their young daughter and they had very little money as Krista’s partner was unable to work. Krista began taking antidepressants around this time which made her feel ill so she came off of them very suddenly. She was also taking the contraceptive pill on and off. Her hair loss lasted for about 4 months during which time she wore a wig. With hindsight, Krista says that she wishes she had shaved her hair off instead and had more confidence about herself with alopecia.

Soon after finding a second bald patch, Krista saw her doctor and was diagnosed with alopecia areata. She remembers being told that there was no cure and that they didn’t know if her hair would grow back, which Krista found very hard to hear. She was referred to a dermatologist who gave her a prescription for a steroid lotion to apply several times a day to the scalp with a cold cap over the top. She didn’t find the doctors and dermatologists very helpful in providing information about alopecia and she was left to research it online for herself. Krista also tried some alternative treatments, such as onion juice and coconut oil, but found they didn’t help. Krista’s scalp hair has now regrown back, though she feels cautious about brushing, straightening or dyeing it like she used to. Her confidence is “slowly getting there” but she prefers wearing a scarf to cover her neck and shoulders as her hair is quite short. Krista worries that her alopecia could return and feels panicked when she sees hairs that have fallen from her head. Krista feels that she will never be the same person as she was before her alopecia. 

Krista found it very distressing losing her hair and adjusting to wearing a wig. She sometimes spoke to her best friends and family members, but she did not really tell anybody how upset she was. Krista knew there were alopecia support groups but she didn’t want to accept what was happening to her so she tended to ignore them. She now thinks it might have taken a lot of the stress away if she had joined a support group. Krista was very worried that her partner would no longer find her attractive or that her young daughter would not recognise her. Krista now feels that she has missed out on spending time with her daughter as she also stopped playing or going out with her as much. Krista spent a lot of time at home and would often wear black or grey clothes so that people didn’t notice her as much. 

Despite the difficulties of having alopecia, Krista feels there have been some positives. She feels that her relationship with her partner has grown stronger as he was there for her throughout the difficult times. Krista feels she has learnt that appearance isn’t everything and says that she appreciates that other people may be facing their own battles to deal with. Krista’s advice to other people with alopecia is not to miss out on things because of having alopecia.

Although Krista’s hair regrew, the fear of it falling out again has stayed with her.

I think even now obviously the amount of people who said to me “You lose a 100 hairs a day don’t worry about it,” even now I find myself when I wash my hair, I’ll go and check the bath just to make sure it’s not happening. When I get up in the morning, I’ll check the pillow just to make sure there’s not a load of hairs and there’s been a couple of times when I’ve washed my hair and there’s probably been about ten hairs in the bath and I, I’ve panicked straight away thinking it’s happening all over again or I’ll be straightening my hair and bits of my hair will fall out and I don’t just think to myself ‘it’s your natural hair cycle’, I think ‘oh my God I’m getting alopecia all over again’.

And I imagine that’s not how you used to think before-

No.

-you had your first patch, so it’s quite different ways-?

Yeah I’d see hair, I’d straighten my hair and I’d wipe hair off my trousers or and it was nothing. But now if I straighten my hair and I feel a bit of hair tickle my neck it fills me with panic and I’d say I straighten my hair every day and whilst I’m straightening it probably three, four hairs land on me and it still now fills me- and I think it will I think for the, even if I’m never ever had an experience with it again I think it’s always gonna panic me. Every time I get stressed I think the first thing that will come into my mind is ‘my hairs gonna fall out again’.

Krista thinks her alopecia may have been triggered by missing contraceptive pills and coming off anti-depressants.

I’m on the pill, I use Celeste I started taking that properly every day after the first time I went to the doctor so from sort of April I started taking it every single day. And I suppose even that sort of, she said to see any kind of change in your hormones that will take three months and two to three months later my hair was growing back. So I do, I think hormones are probably a big part to play in it. But then once my hair started growing back then it went through my mind as, well it didn’t have to happen maybe I could have stopped it from happening if I’d have stopped taking the anti-suppressants properly or took my pill properly and it might not have ever happened to me. So then I started blaming myself so that was hard as well, getting me through that. And even now I still, I still blame myself and I, I will still look back and think it was my fault I got so stressed and took all, didn’t take these tablets I was supposed to be taking properly so they weren’t, even now I’d say I probably do still blame myself for it happening.

Krista was told her to apply topical steroids to her scalp every 4 hours in the day. She says she went through lots of bottles of the steroid treatment, which would have been very expensive if she had to pay for prescriptions.

I think that was, you had to do it like sort of more, you had to do it sort of every four hours until you went to bed sort of thing so I just did it sort of three times. it was just, it was horrible it was just horrible , you were putting it on, the reason for using it, it was just wasn’t nice at all and I went through about a 100 bottles because I had to use it for three months, every day.

Yeah, what was that like in terms of prescription costs and the sort of financial side of it?

Luckily at the time I was receiving working tax credits child tax credits sorry so I didn’t actually have to pay for it. But like if I was, if I did have to pay for it I’d have been paying probably £7.00 a week, a week to every two weeks so it could have been really expensive, so I think it would have been easier if they could have somehow done it some kind of, somehow got it for free, because I mean there’s certain things you can get for free. But I’d say for anybody paying for the prescription it would have cost an absolute fortune. 

When Krista first had alopecia, she was so “wrapped up” in what was happening to her that she felt she wasn’t there for her daughter.

I was 22 when it happened, I’ve turned 23. And obviously with [daughter’s name], I feel like I missed out on those few months because I didn’t pay, I didn’t pay attention and it was when she was learning and learning to talk and learning to count and all sorts of things like that and. And I wasn’t paying attention. Cos I, I was too wrapped up in what was happening to me, obviously I still cared for her and did everything sort of did nappy changes bath times and all sorts of things like that but my head was never really in it I, and I felt like I never spent time with her because when I got up in the morning, like now morning times is, I don’t start work till 3 ‘o’ clock so morning times is mine and [daughter’s name]’s we play we go out go to play group. And now, and back then it was just literally I would get up and I would sit on the sofa and she’d be playing with her toys on the floor and I wasn’t playing with her because I was just too wrapped up in what was happening which was wrong. Which a part of me feels like I’d, not failed her but I feel like I just missed out on a lot of stuff that she was doing. And it was even little things like in the morning whilst, whilst we were having our breakfast I’d catch up on the soaps if I was working the night before and I even stopped watching that. Cos I was watching looking at all the women thinking look how beautiful you look with all your hair and I’ve got none, even down to watching telly is affected me watching telly, which was strange, it was so strange. Even [daughter’s name]’s kid’s programmes there was women on there with hair and I didn’t wanna look at them cos I didn’t have any which was strange. You don’t think it will affect just normal everyday things like watching the telly. 

Krista found getting her eyebrows tattooed a bit painful.

I was scared. I’ve got normal tattoos and I was scared that it was gonna, cos obviously with it being so on a bone as well I was scared that it was really gonna hurt. she put like an anti, not an antiseptic and anaesthetic cream just on my eyes and it didn’t hurt at first, I was quite surprised but then as the anaesthetic cream started to wear off it got more and more painful. and she topped it up once but after it just, just didn’t feel the same It was so, especially this eyebrow especially for some reason every time she went over it with the needle I wanted to sneeze but she said that happens to quite a lot of people when they have their right eye done [laughs].

That’s strange.

Strangely, I don’t know why [laughs]. But it was painful and it hurt afterwards as well you couldn’t wash your face for 24 hours so I always had make-up on at the time so I had to sort of baby wipe all my face. You couldn’t get them wet for 24 hours and then they scabbed over obviously like normal tattoos do so they didn’t look too great when they scabbed over obviously cos I wore make-up so you could see the scabs. but they were really, really tender so probably about, even now sort of [daughter’s name] might, can catch me with a nail and even now it’s still tender And I would have never had it done obviously I, when I saw all these semi-permanent brows becoming all the sort of fashion I used to think well why you’ve got eyebrows just go and have them styled why would you ever have that done but now I had no choice and I had to have it done.

When Krista had alopecia, she was really worried about the impact on her young daughter and step-daughter.

Yeah I don’t, I felt embarrassed, I felt it was, I felt embarrassed for [daughter’s name] if that makes sense. Cos I thought well what I used to picture in my head was me having no hair and when she goes to, I imagined her when she went to school and I thought well kids can be nasty and I thought well what if sort of one of the other mums said to their children ‘Oh [daughter’s name]’s mum wore a wig’ [hmm] and I’ve worked, I did child care at college so I did sort of placements in schools and nurseries and kids can be nasty and things that they say. And I kept thinking to myself what if she gets bullied cos her mum wears a wig and it’s all my fault. and it, it’s even little things to, like when I get her out of the car and she’d pull on my hair and I think well what if she pulls my wig off and people laugh at me [mic noise] and for me it was easier to just stay in the house with her. And I said before that I was scared that she wouldn’t recognise me but she never, it never fazed her. And [partner’s name]’s got a four year old daughter from a previous relationship and even she never mentioned it, she never asked, she never asked where my hair was she never said anything like that but she’d see me put my wig on and she’d asked sort of “Why did you put your hair on as a hat” sort of thing. And I do remember one day going to Morrison’s with [partner’s name]’s daughter went and did some food shopping and we were in the middle of a really busy aisle and luckily my hair had started growing back at this point so it didn’t bother me so much. And in the middle of a really busy aisle she decided to shout out one day “Can I take my hair off like you do?” So that was [laughs] that was a bit, I mean people turned round and looked at me but I just laughed and I just said to her, I just said “My hair, my hair got poorly and hopefully it should never ever happen to your hair so no you should never ever have to take your hair off like I do.” So I’d say that that was probably, it wasn’t very nice explaining that to a four year old cos she doesn’t understand, she hasn’t got a clue. And after that I think she relaxed then cos if my wig wasn’t on, she’d disappear upstairs and she knew where I kept it and she’d come walking downstairs with my wig on [laughs] So it was, I was very surprised that she didn’t pick up on it and she didn’t ask questions, I mean I have quite a good relationship with her mum and I don’t think she ever questioned it, I don’t know whether she did and her mum didn’t tell me but I don’t, to be honest I don’t think she ever questioned where my hair was until I, until she noticed I started taking my wig off and then she questioned it. So for a four year old to see me with a bald head I was surprised she never said anything and I was surprised [daughter’s name] never. The only time [daughter’s name] ever looked at me strange was when I had my hair cut when I took my wig off. And when, she was here at the time and I came back and I walked in and she just sort of, it was my voice that she recognised but she didn’t recognise me cos I’d gone from having the wig, the long hair to this style now but then she soon got used to that she got used to it quicker than I have [laughs].

Krista thinks it’s important to try and find “some funny sides” to living with alopecia.

There was some funny sides to it, some bits that made me laugh. One day I rang my dad, this was before I had the wig and I was just, I just broke down on the phone to him and I asked him to come round and he came round and we were sitting on the sofa and he said “You’ve still got hair it’s not that bad” and ran his fingers through my hair and just a big clump of hair fell out and he was just like ‘Oh gosh’ and just threw it behind the sofa, so I mean some bits sometimes you had to laugh cos otherwise you’d just sit there crying all day. 

Krista says she and her partner have been through a lot together. She thinks the support he gave her when she was struggling with her alopecia has made their relationship stronger.

I’d say probably the relationship with my partner I think because obviously everything that happened last year I think we were both in a pretty bad, I think probably me more than him, we were both in pretty bad place And I think that probably made us stronger. Me having alopecia because I saw that he was there for me all the way through, so that put us in a better place. I mean there was times when in May I walked out, I took [daughter’s name] and I walked out of our house because I thought that I was doing the right thing by leaving him. Because I, part of me thought is he with me now cos he feels sorry for me I don’t, I thought I don’t look beautiful to him like he used to say so I walked out and I went for three days, three or four days to try and make it easier for him, in my own head I was making it easier for him, he wasn’t feeling sorry for me cos I had no hair. In my mind he wanted to leave me the whole time but obviously he felt sorry for me so he didn’t. So I’d say that was probably a positive it made me look at the relationship again and it made me think well we have been through quite a lot together, we both obviously now had problems and we’ve both been there for each other. I’d say right now probably that’s the positive.

Krista worked as a bar manager when she had rapid hair loss. She told the people she worked with and regular customers that she wore a wig but didn’t talk about it to strangers.

So once had my wig on obviously nobody could see and I took photos of my hair if people had asked me, the people who I was close to at work I’d show them and everybody was really surprised when they saw how much hair I had actually lost in the end, sort of by the end of May. It, everyone was really surprised at how much I’d lost. But they were all really nice about it and they just kept telling me to stop stressing and most people said they couldn’t tell I had a wig on and even now other customers who’ve come in who didn’t know and they said ‘Oh you’ve had your hair extensions out,’ and when I’ve admitted to them that no actually it was a wig all of them have said they didn’t have a clue. They didn’t know, they would have never known unless I had told then it was a wig. I’d say there was only one person who, one lady I‘d never seen her before and she come in for a drink one night and she was looking at my hair funny and I looked at her and she just said ‘Oh’ she just said “Oh I was just, your hair’s really shiny that’s all.” And I thought, cos I’d say she was the only person who I thought to myself she knows I’m wearing a wig. But I was quite open with people at work to say I was wearing a wig, it was just, it was sort of people I hadn’t seen for a while I’d never, or strangers I’d never admit to them that I was wearing a wig.

Krista had a long wait before she saw a dermatologist. She was told that all the information she needed was online and she left the appointment feeling let down.

I went a few times before I got referred and if they can see that somebody’s hair is getting worse just refer them because I still think now like I said earlier, if I had been referred back in March I don’t think it would have got the way it did because the treatment worked for me. And I think a lot of the hair loss as well cos I would put it down to stress and sort of the hormones but. When I found out I had alopecia, I stressed even more which I noticed even more hair fell. So I do think if I was referred earlier it would have, it wouldn’t have got to the stage it got to. And especially the dermatologist, not to say thing like, “Have you searched on Google? Then you’ll already know the facts”, don’t give people-. You-, I’d have preferred if he told me rather, cos I think sometimes you can all Google and you scare yourself cos it’s always horror stories so if he’d have maybe just spent an extra five minutes with me explaining why, why I don’t, even now I don’t even know why it happens all I know it can be an autoimmune disorder, just explaining more about it I think, I’d probably say, that’s all I’d say. Just because we’re not ill just because we’ve got no threat to our lives I think we still need as much time as anybody else cos of the mental effects it has on you. Even now I don’t think I’ll ever, mentally I don’t think I’ll ever be that same person I was before, ever, because this happened.