I only went back to get another blood test to check that my iron levels were back up, and after that I thought I know what the treatment options are. I know that you can have like injections in your head, and I didn’t really fancy having injections in my head. And a lot of the other treatments would affect me in other ways and would have bad side effects. So I thought, I’m healthy, you know like the only problem is that I’m losing my hair, it’s probably best to just leave it and let it do its thing instead of having something that will interfere with me in other ways. So I only went back to get that blood test done to check the results and apart from that I haven’t really been back.

Are you still taking the iron tablets as well?

I’m not cos they, it was quite a high dose so you take it for a short amount of time. And then when your iron levels are back up you just need to make sure that you keep eating iron, but I’m not on the supplements any more, but I do have to watch what I eat.

All I remember is that it was a man and he, both my parents were there, and he said, It will probably take-, he said, It’s alopecia areata which means that patch will probably take a year to sort out, but what he didn’t know was that it was going to be more than one patch and carry on. So, yeah, he kind of gave me false hope, because I remember I was like counting down the months until the year was over and then it just carried on after and after and after a while I stopped counting. Which is another thing I want to say, because I put a timeframe on it and that was really-, that was really frustrating because I was kind of wishing the days away, but you kind of have to, what I’ve learnt now is that you can’t ever, you don’t ever know when it’s going to stop or start again. So you have to just let it, let it happen and just be patient with it and sort of don’t let it stop you, because for a while I was like, I’m not going to do this, I’m not going to go out, I’m not going to go to parties, I’m not going to buy these clothes, I’m not going to wear these clothes until my hair is back’ and you can’t do that because if that happens for the rest of your life, then you are always waiting to live.

So what was it like when you saw the nurse the first time and did she suggest anything?

No.

No?

Not anything. I mean she didn’t, she had to look up what it was so the chances of her knowing like the causes behind it, or the treatments were pretty slim. And I suppose also because she was referring me she didn’t need to know that because she was like sending me to an expert. But then even the dermatologist I think she did tell me that it was an autoimmune disease but she didn’t, if I didn’t know what an autoimmune disease was she wouldn’t have explained it to me. And I had to find all that out for myself and it’s kind of good that I knew about that beforehand, but I think not, and I don’t know if there’s an expectation that doctors think that people know about things that the doctors know about, like autoimmune diseases, but I know that a lot of people don’t know what an autoimmune disease, especially, especially in the context of alopecia. And they don’t understand why it could possibly affect your hair. And I don’t know if it’s that it’s considered not important to explain that bit because I suppose we don’t really need to know what’s going on like behind the scenes, or if it’s that doctors expect us to know that kind of stuff. But I think if I didn’t know what it was I would’ve been very confused if I was suddenly told, Oh you have an autoimmune disease, that’s why your hair is falling out. Off you go, like. It’s, it’s quite disconcerting. So obviously I had to do all the research on that myself, which kind of yeah it makes you feel quite insecure in where you stand in terms of whether, you’re like, Am I ill then? Am I sick? Am I okay? Do I have a disease? Like what’s going on?

I got on really well with all of the people that I’ve seen throughout the years with dermatologists. They’ve all been really open and friendly and I think that was partially a reaction to how I was as well, because I was so open about my alopecia and very carefree effectively. So they just were very straight and honest with me which I always found really nice. And, of course, if they had to say anything that was you know, kind of bad like, Oh, we’re thinking of putting you up to the next percentage of treatment,’ they would just, they would be really nice about it and phrase it exactly how I’d sort of react to, react well to it. So they were very good at that. I can’t really think of any criticisms, which is quite nice [laughs].

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.

But then, the annoying thing is, it changes depending on where you are. So, area to area, it will have different rules and it gets really frustrating. Especially people in Scotland, a lot of them get four wigs on the NHS a year and here in England you only get two wigs on the NHS, synthetic wigs, and some people can like write to their local MP and get a human hair wig, kind of accumulated to the same price as two synthetic wigs on, on prescription. But other areas will completely say, No, you can’t do tha, so it changes, really.

And did you have that difference between where you originally lived and then when you moved here?

Yeah, it was much harder to get wigs where I used to live. Whereas here I was actually offered wigs and also it was-, wasn’t as expensive and it was a lot better and easier. So, I did notice a big difference because I had the opportunity to kind of try two different areas and they were only an hour away from each other, so they’re not a massive different- and there was only a couple of boroughs in between and it’s really weird to see kind of the difference of how it’s dealt with, so yeah.

And where did you first hear that you could get NHS wigs? Cos you said that previously doctors had said you couldn’t?

No, I actually found out from a friend online and she said that she got a wig on NHS and I was like, Really, how did you do that And they were like, Well, you’re entitled to the. And so then obviously you look it up and you see that you’re entitled, what you’re entitled to and like you look up all the official charities that say, You’re entitled to this many wigs and all of that. So then we questioned, that’s when we actually questioned the dermatologist and they’d said, No to us. And then I saw another dermatologist and I was like, Yeah, you were meant to be getting wigs from 16. Weren’t you cos I was wearing a wig at the time. So he thought I’d got that from the NHS. I was like, No, I’ve been buying these wig. So yeah, that’s when, y’know, started getting, getting prescriptions, so. But then I only get a free prescription at the moment because I’m on ESA [Employment and Support Allowance] so I’m kind of entitled to that, whereas if I didn’t have any problems, I’d be having to pay prescription, so. Each wig I get, I have to pay for a prescription.

Well, my very first doctor that I saw was the GP. And I was going back, sort of I went back about three times in the past, in the l-, in the space of two weeks just because it was just gradually getting worse. And he was seeing like I was really upset because this was the time when it was just first coming out and you just feel horrible. Like I just remember I cried every-, I cried like, I don’t know, it must have been about six times a day. Cos it was just, you know, every time you look in a mirror, you look at other people with hair and you’re like, that’s what I was saying to him like, I’m just, I’m depressed. And I’m not like a depressed person at all. I’m really quite optimistic. And he like, he gave me a hug and he was like, which, you know, you don’t expect from doctors all the time. But I think he just saw how upset I was. And he referred me straight away for a dermatologist. And the dermatologists, like they’ve been brilliant about my skin. But I think about my hair, they’ve just been quite realistic. Which is fine. I’d rather them be realistic. So just saying that, There are treatment options, but none of which are going to cure it. Which is like what, it’s what I expected, but I think, you know, it doesn’t leave me with much hope. And, you know, like they check your hair and, or they check your head and they say, Oh, well, that, that area’s scarred, so there’s probably not going to be any hair, any hair regrowth there. And it’s a bit like, you know, you know, W-, is it ever gonna grow back? And I think cos there’s no answers to it and there’s not many people that specialise in it like sp-, you know, so specifically. So, you know, a lot of the time seeing the dermatologist it was just quite, you know, just, How are you doing? More like psychological help and, you know, help with the wigs and stuff.

Have your doctors ever talked about the emotional and social side of alopecia?

Only when I started bringing it up. So I brought it up with my GP because when I told my university about it, they need evidence. So I went to my GP to get evidence for the fact that I was having social anxiety and then they sort of talked to me more about it and asked me what I was going through and allowed me to talk about it and actually my GP also referred me to a counselling service so I could talk more with someone else as well who’s more experienced in sort of helping you talk about it [laugh]. So yeah. So I mentioned to the doctor but they were helpful when I sort of mentioned it to them. The counsellor was very good. I actually didn’t have that many sessions but they were good for the sessions I did have [laugh]. And it was nice to sort of talk to more people about it, another person about it, get a different perspective. And having someone who doesn’t know me really helps because I feel like I can be more open in talking to them. I feel like, I like to be sort of a stronger person almost in the sense that like around my family and stuff, I don’t like to show weakness. I don’t know why, it’s just something I’ve, I’m just like. But because that I don’t, I wouldn’t like show my very emotional side to them. So I didn’t-, I feel like I was a sort of putting up a shield and I couldn’t really talk about it properly, even though I was talking about it with them, I couldn’t talk about it properly with anyone. So the counsellor was sort of very helpful.

Do you feel like they appreciate the significance of alopecia in your life or-?

That’s a good question. I think my hairdresser probably appreciates it more than the doctors do. Because I don’t know if maybe a lot of people don’t go to get a diagnosis when they are diagnosed, like when they have alopecia because they are embarrassed or whatever. Or if people go and they’re not given enough information about it. But I do feel that especially, even when I went to a dermatologist who must’ve seen hundreds of people with alopecia she didn’t really seem to know what she was talking about. And it, you kind of lose your confidence a little bit because it’s, like if this person doesn’t know what’s going on with me how, how am I ever going to understand what’s happening? But I do think that a lot of doctors don’t, either don’t think it’s important because it’s not like painful or life threatening or anything, and also I think because there’s so much focus on the kind of scientific side of medicine people don’t really understand the social impact and there’s not much documented about the social impact. And especially not the doctors are going to view, they’re not going to go and read something about like people being sad because they don’t have hair. They’re going to read like about the autoimmune diseases and stuff. So yeah, it-, I don’t really expect doctors to understand that kind of thing and to understand the impact of it but I do think it would probably help, especially with diagnosis and with making patients feel a lot more secure about it.