Don’t be like that doctor like, yeah, don’t-, always, always make them feel comfortable. Like it’s an embarrassing situation having to show your hair when you have to and if you just do it in the nicest way possible and I think when, when the first thing you do when you walk into that doctors think is, All right, ok, can you show me this blah-de-blah? I think it would be nice to be treated more like a person then, than someone just coming to get like treatment, cos it’s more of an emotional thing than anything else like you wouldn’t walk into someone say, with cancer and you wouldn’t be like, Right, ok, blah-de-blah, straight in. You would get to know them, you would like talk to them and reassure them, but there’s no sense of that with, with alopecia.

If there’s something that’s bothering me about it or if I said I’m getting ready for a night out with like my friends, they’ll just like oh let me just fix that bit of hair or something small. It’s nothing like it’s there’s no like a major like sit down cry or anything like that. At the beginning obviously there was and my, occasionally me and my mum do. But it’s more just like it’s just something like say if you had like a bit of dirt on your face they’d be like just get rid of it, it’s just something like as natural as that now, which is what definitely helps. Something that’s not like forced or should I tell her that, that her bald patch is out or something like that. It’s just like something as simple as day to day life and that’s I think is the biggest support you could have is just natural now, cos it like at the moment it feels like I’m going to have it forever, like I’ve had it for half of my life so if for me it feels natural and then when people around me and it feels natural for them it makes me feel a lot more secure and like normal about it.

The first dermatology, the dermatology doctor I had, she was amazing like the, the and there was a sister in the ward, who did all my treatment for me. They were absolutely amazing. And I think because they were female they could kind of empathise and like sympathise of what you’re going through.

So like first off, yeah, that was, they were really like, yeah, they were really like supportive it was a friendly face to see every week. But then when I went back last year to a completely different hospital, I felt like he’d, he just didn’t understand anything. I felt like I was like teaching him about my illness because I’d been through it so long and like I said, it was back when I was wearing extensions and he made me just take them all out, straight, straight out. And then he was like I only went to get the cream originally and he was like, Right, you’re-, I think you need to have injections, I’ll give you the cream as well. So he pressured me into having injections and then just left me with a nurse in the like- when he was done with it, he was like, Right, OK you can leave now, with my extensions in my hair like my hair all up in pain, like scarred at what’s just happened, completely by myself. Luckily the nurse who was female was there and she kind of understood like how I, I couldn’t go outside looking like that and she let me into their staff room and she let me like do my hair again and like she gave me time to go outside again like by myself, that was awful. And they’re my two dermatology doctors I’ve seen, so one was amazing and one was awful.

At the beginning of secondary school, obviously that was very, very difficult cos it’s, you’re in an awful situation anyway. Bullying is rife and people like new making new friends and stuff that was awful. And then as it got better and like I got more comfortable in school it was a lot easier. And then from being in sixth form to now, so the last 3, 4 years that’s been just so much easier cos I am- I’m adult enough now to accept that it is, that is my life and it’s not and people like people my age now they don’t bully, like that’s not a thing like so I think I’m glad to have grown up and be OK with it now.

And you mentioned before about sort of covering patches with different hair styles, could you tell me a bit about that?

Yeah because mine was on the side and the back I always had my hair down and then depending on where the patches were I’d just change my side parting but now I probably have about this much hair along the front here.

So that’s why I have a bandana to keep everything in place. But yeah, I’m I know, my one of my mum’s friends has a tiny like five pee patch of alopecia all she does is just keep her hair tied up all day.

It is just finding what, what hides it best for you and that’s manageable every day. Like for me all I have to do is brush my hair, straighten it and put it in a bandana and that’s so much easier than going through wearing like eight pieces of extensions which pull on your hair, then having to style it every day like that’s, that’s what I used to do. But now I’m. I’m totally comfortable just wearing something like a bandana or a head scarf.

Say if it’s like eight o’clock at night, should we go out for a drink? And there’s the whole getting, we’re getting ready thing. And when I want to go out like say we’ll go out drinking or to a pub or on a date or something, I have my extensions in because I feel more comfortable and I don’t have to worry about like moving too fast or someone like seeing it on a night out when they’re drunk and saying something. So it does take a lot, it does take a fair bit for me to go outside, like some days I just don’t feel OK like with being outside like in whether it’s the weather or what I’m doing or like if something has gone right. If my hair hasn’t gone right then I just, I can’t, I just can’t do it.

But that’s just something that I, it’s a personal battle that I have to get over. But with, to do with friends though I’ll always go and see my friends like in a closed environment, but when it’s when we’re outside in public that’s when I do start to get quite worried, like it does take me a lot, a lot of time to get ready.

Yeah.

To be OK with leaving.

And can you tell me a bit about that what it was like when you were having the regrowth?

It was a slow, slow process. But I’ve originally I had a line from the front to the back, all gone in the middle and down the sides. And that middle bit was the first bit that ever grew back and it was growing back up like this so I was getting more remarks at school like saying that, I don’t know, I looked like I had a Mohawk or like chicken, like a chicken fluff, whatever. That I was happy to have it back, but I was willing for it to grow faster and after that the sides I, because I was hiding it from myself I didn’t like to look at myself in the mirror I never really knew when it grow back, grew back but it did. And then it fell out again 2013 and started growing back 2014 and that’s been a really slow, I’ve got that much in a year down the sides here. And it’s a slow process, but I count my blessings that they are there.

I think cos the stereotype of women having like the typical one is like long hair, like full head of hair, like whereas men it is more acceptable to be bald cos of like male pattern baldness and like old age and stuff. But with women, I think it’s a lot, lot harder cos that stereotype. But if you see, I see people down the street who have chosen to shave their head and that’s cool, but then because I haven’t chosen to shave my head and it’s not like stubbly that’s not OK. Like that’s what I don’t understand like all this fashion is coming in of people taking off half the head or models with like with shaved head, but because they have that tiny like not even inch like tiny, tiny bit of a stubble, that’s more acceptable and that’s, that does wind me up.

But I have the where I’ve got mine is exactly where people shave off, but I can’t shave mine because people think it’s weird.

When I went to the doctor’s last year they said there’s a, a newish age treatment called topical immunotherapy where they rub like a harsh chemical on your- on the patches and it induces like an eczema type reaction and your body fights that and I’ve heard the success rates are quite good which is what I’m in the process now of finding the hospitals that do it and that’s why I’m getting referred from the GP. But it’s-, I’m two months in now waiting to see if they’ll do it where I live or if I have to travel and if they’ll fund me and things like that, so it’s quite a long process trying to find out what hospitals do this treatment. But that’s the last thing that I have left cos there was one treatment the reason when we stopped treatment, they wanted to move me onto- I don’t even know what’s called but they made, they, they make you take this, this pill which made your skin more sensitive to UV light and your eyes and stuff so you have to wear like sun glasses and then you sit in a almost like a giant circular sunbed with the patches on show. But I at that point that was when me and my mum just like totally drew the line, like needles were enough like, like that was the stabbing enough and then moving on to something as big as that where I’d have to stay in hospital once a week I thought that was just too much.