Snatched Edges Podcast - My My Hair Loss Story - Annette, Diagnosis Unknown

27 Apr

Written By Untype

My hair loss story mini series I am talking to people who have experienced hair loss and talking about the journey to diagnosis and beyond

Episode overview

Full Transcript

“Welcome back to the Snatched Edges Podcast. It's me, your friendly neighborhood Trichologist Ebuni and I'm back with a new episode for you guys. And as I said last time, I think I did mention it. This is part of a series called my hair loss story where I get to talk to, mostly black women about the issues they faced going through hair loss. So we'll be hearing from different people with all types of diagnosis and some will be unknown, and hear about their journey from you know when they first noticed it happened, the professionals they came into contact with along the way and treatments, and how it's really been for them. I really wanted to do this because I felt like, in clinic, I get to speak to a lot of people about how it makes them feel, but I don't necessarily get to share those stories and rather than me kind of voicing how I feel about it I wanted people to to talk about it themselves because. No, I guess like the stories are better from the horse's mouth. And, yeah, just there's so much shame and stigma around hair loss. It really is frustrating especially when a lot of the conditions that people face aren’t you know, anything to do with how they've treated their hair at all it's really just like conditions that occur, sometimes spontaneously, sometimes because of genetics, sometimes because of like life events but not that people have done something to themselves, and hair loss is something that a lot of people will experience in their lifetime. So I'm hoping that you know by listening to these stories, people who are experiencing hair loss will find some comfort that they aren't alone, and people who maybe haven't, but know someone who is, will find a better way to support the people around them. So yeah, I've got quite a few of these lined up, i’ll be dropping one episode a week for the next couple of weeks. And other news, salon update, i can’t believe the government is saying we can go back to work on the Fourth of July, I am not planning to go back at that time, I feel like it's really really soon. I don’t think the UK has been doing all they can to reduce the spread of COVID, and I'm still going to be at home kicking back for a little while just to kind of see you know what happens before then. But I will be letting people in my mailing list know as soon as I am ready to open, and you guys will get priority slots on bookings so please make sure you are signed up. Also the wash day is still continuing, it will probably continue until like that day. I don't think I'll do past then, that's probably about four more weekends that i’ll be doing the free weekly wash day on a Sunday where we can talk about your hair products, your routine and just kind of have the mini Salon experience while we're all still social distancing. And I've also started doing some braiding class so the first one is on Wednesday the third of June, and that we will be learning how to do singles, so Plaits and braids extensions and yeah, the tickets will be available from the link below and I hope you guys can make it. And yeah, I'm going to let you guys enjoy the interview with Annette, whose diagnosis is currently unknown. If you are suffering from any of the problems mentioned in this episode, please contact myself if you're based in London or while I'm still doing online consultations. You can find your local Trichologist by searching up on Google I'll put some links below to some directories that I know, going to your GPS, always a good show to get some blood work done, and to see if you can get recommended to a dermatologist. There, sit back, enjoy it. I will be back soon. Take care. Thanks for listening”.

”So my name is Annette, I'm 28 years old, and I first started experiencing hair loss, probably I think around March of last year,I didn't really notice it happening but I think it was around that time”.

”Okay, so when you say you don't really feel like you notice that happening. When did you first notice it then”.

“Probably, towards the end of March, I was like, Oh, my head. Starting to thin

on the sides,I think it started kind of on the left side at first and I thought ‘this is really weird’. And my scalp was feeling quite sore. But I just, I didn't know I didn't really do anything about it because it wasn't so obvious. And so I think I just kind of ignored it and when it got to April I saw that the state was mirroring on the other side of my head as well. And I just thought okay this is strange. And it was then besides becoming obvious and then around May time, i decided to just go to my GP, cause i had been wearing a headscarf from about the end of March onwards”.

00.05.25

“Yeah, so I guess maybe what you're saying to me then is that like, I guess on some level you knew something was happening but it didn't really seem like a big deal to be addressed.

It's kind of like okay maybe there's something going on, you know my scalp or hair falls a little bit different but it wasn't until it really started affecting and became noticeable that you're like okay let me seek help. Did anybody else notice that at the time”?

“no, not really, because I was covering up my hair so much,at work no one would have noticed it. At home, not, not particularly, no, I don't think so. um, it wasn't until it got to that point where I had to show my mom like this is really strange what's going on, and then my sister was like uh you need to you need to go to the doctor, and just figure it out.So I never saw the hair fall, i was like what’s happening”.

00.06.11

“ Okay, so it was just like you noticed your scalp was just that there was no..was it like patches of hair loss or can you describe how it looked”.

“yeah so it's still I mean it's not improved so it looks pretty weird. It’s patches of hair loss at the sides of my hair you can see like hair trying to grow, but it's not perfect. It's very strange. It's very very strange to explain bits of hair around baldness but not exactly baldness it's very weird looking and, yeah”.

” And so okay so what made you then first put on the headscarf and be like okay I need to kind of like, you know, stop people, was it like, what was the reasoning behind wearing the headscarf? Was it different from using it for you to feel confident or what was it”.

“In my head I was thinking, because it's so weird, the middle of my hair grows fine, so it was like I had a Mohican. My hair was growing, normally, and the sided my hair just looks really weird, and my because my scalp was quite sore, I was quite convinced that you could probably even see the bumps and stuff so I just thought, okay, my own confidence, and just for the people whether they can see or not I just wanted to cover up completely”.

00.07.20

“Yeah, so why did you go to a GP rather than maybe going to like a hairdresser or what was it that told you maybe this is like, you know, something that I might need to see a doctor for”.

“So the year before so towards the end of 2018 actually went to a Trichologist, just because I had my problems and my scalp in general, and I had always had a little bit of a bald spot towards the front of my head it's always been quite sore. So I went to a Trichologist for that reason. I had a really really bad experience with the Trichologist, the regime they gave me, the product, my head and not take to it.And I tried explaining, but they said ‘Oh your hair is not just used to it’, but it just didn't get any better.

So, I stopped the whole regime around March and that's also when everything started to happen. So I wasn't sure if that was linked or not but I just thought I'm not going to a Trichologist again, I was really kind of put off. So I thought let me go to my GP and see what they may have to say. Right”.

00.08.16

“And so what was it like going to your GP for hair loss, because I guess that was the first time you visited them for that kind of reason”?

“yeah that was the first time. I wasn't really expecting much, I mean I've done a little bit of research and on the NHS website, I don't really think there's that much help or, I don't know, that much information about hair loss. It just didn't seem like I was going to get anything out of it, but I just thought I'd let me just go anyway and see what he might say. He could evidently see that there was a problem, but he just said ‘I don't know what to do I'm going to have to refer you to a dermatologist at a hospital’.

Yeah, he did prescribe me something to kind of soothe the inflammation on my scalp but he immediately said ‘I don't know what's wrong with you’”.

00.09.02

”Yeah, but I guess it was quite easy for him to be like listen this is like, you know, maybe outside of the scope of things that I understand, let me refer you to someone who can help”.

“Yes he did and he gave me a blood test as well because he didn't, I think he did that because he didn't know what else to do. So he’s like, i’ll just give you a blood test,take this ointment and I'm gonna refer you to a hospital for more support”.

“Okay, cool. And so, I guess, coming away from that appointment. How did you feel then”?

“Not any better at all. I initially thought okay, let's see this appointment, because my scalp was really painful so I thought maybe it might get better after this. But it didn't as well and also, when I finally got the letter for my referral, it was four to five months time. Yeah, that's when I just, that was it for me. I was just really upset because I couldn't go back to my doctor for any more support in between that time because he didn't know what to do and I didn't know what to do in between that time either. So yeah it was written in May, I didn't get my appointment until September. So, yeah, i was not happy”.

00.10.04

“So what were you experiencing between those that four and five months of waiting, because it's like okay, like it's serious enough for me to go to my GP now, I've had to like, change the way I style my hair by wearing a headscarf, my scalp is tender and in pain. Now i have to wait five months until I can see somebody who could help me. What does that even feel like how does that leave you”.

00.10.28

“At that point, I think my mental health was like just..my confidence was so low.

At that point I just didn't know what to do and also I realized that me wearing headscarves in summer, it was hot, I didn't think my scalp liked it, so it was aggravating even more. So i had to come to a point that like ‘you can't keep wearing the headscarf constantly’ so I took the decision to trim my hair. Now I go completely shaved. I took the decision to trim my hair, so it was kind of even, and less obvious. But I think the scalp issue was still bothering me because It felt like my scalp was on fire. I just didn't know what to do at all and it was troubling. I would call my mom up and start crying cause i actually didn’t know what to do. Because I didn't know what was going on I didn't know why this was happening to me. And, yeah, it was just, it was hard, it was a hard time between that. Yeah”.

00.11.23

“And so, had you been growing your hair for a long time like cause i know for some people, cutting their hair can be a really big decision, and especially when it feels like it's out of your hands like, he had to do it because your hair was like breaking and then having issues with trying to make it appropriate for your everyday life, like did you go to a barber, selected to do at home. What was the buildup to cutting your hair”.

”So, um, previously. I had locs for quite a while, but I think my hair couldn't really handle the weight up to a point. So I cut my locs, I think I cut them in 2017, and it wasn't by choice, like I didn't want to, my hairdresser was like ‘you need to’, and he shaved it , and I remember at that time my hair was off, like quite low.

“You just went for like a big chop completely, all the locs gone. Wow. Why did your hairdresser say you need to like the weight explain that to me a bit more, please".

So, it wasn't even that long but I think he said wherever I started off my locs, It wasn't, it just wasn't my, it wasn't right for my hair the technique wasn't right.

Even though it didn't feel that heavy to me, I think, I don't know, for me it has been twisted previously but it started to get very thin in certain areas. He was like okay you can keep it, but it isn't going to do you any good. I think I completely shaved it off, cut it off and that's it. So I wasn't happy but I did it, and I remember when I walked out I was just at that point because having hair around my shoulders to having no hair at all. I hadn't known how to go about the decision was kind of out like you'd agree to it, but not really.

it was yeah it was just like what is going on. I just thought I probably pushed into it, I don't know but it happened. And I remember you just picked my locs up and put it in a bin like it was just. I don’t know, it was a separation I was not ready for. Yeah, I remember walking out of the hairdressers’ just this feeling, like I felt so insecure. I just wasn't used to it and It felt really weird and I wasn't happy

00.13.31

“So when you booked your appointment for that day, was it for a haircut”?

No, it was for a retwist and I came out with no hair.

Wow, so it wasn't even like okay go home to think about it, or like, take a minute or just no no your locs are like mush up basically Yeah, I can’t do nothing about them, let me just cut them off and you're like, before you know it, they’re all just gone”.

He started cutting, and he was like, ‘’are you sure ?’’ I mean you've cut, like the back already. What do I need to do now, I can't walk out like this.

So it was already gone, and so from that point on this I've been trying to grow my hair again. My hair grows very slowly. So, from that 2017 to like 2018 it grew nicely it was still quite thin hair,anyway but it grew nicely.So I had no intention of cutting my hair again. And I liked having braids, but I didn't do it often. I probably did every six months or so. Okay. Yeah, that's when it was like grown out. So when I had to go back to cutting it again I was really disappointed because that was not part of the plan, at all, but that was the only way for me to feel comfortable between that time of me waiting for my appointment and stuff so yeah.

00.14.43

“Wow, that’s a rollercoaster I'm just, I'm still just like, I'd have walked in to get a retwist now I have no hair”.

I know, there was nothing I could do and I don’t know why he asked me after if I’m sure. you've already cut my hair. So, I didn't go back after that.

00.15.07

“Do you know why, because I get a bad rep for being scissor happy. For me whenever I'm like, I know someone really needs a cut, I always try to make them feel comfortable because like, you know, it's really a traumatic experience. I mean, I know I had a cut when I was like nine years old and my hair has never grown the same way since. You know when boys are like playing sports, and they’re like yeah, you know, I could have improved but my ankle got hurt when I was younger. One bad injury doesn't take you out of the game forever. It doesn't make any sense. Yeah. Okay. So we're back. You've got your appointment at our you're waiting. cut your hair. Have you seen a dermatologist yet? Was it like last year? I'm guessing”?

“Yes. So this is last year, the fifth of September. I remember on the fourth of September, they called me at work to say they're trying to cancel it and reschedule it to January. I was like, Oh, yes. I was, Oh, my gosh, so I was at work, I was not happy. And then people could see what was wrong with me. I think only two people knew, and my manager, I had to tell my manager, my hair is falling out, this is why I’ve been wearing headscarves and what's going on. I also had to tell the person, who was kind of like our HR, as well, like, you know, because she needs to give me time off to go.She was the only one that knew what was happening. And It like, was it 15 minutes later, they called me back saying it was fine. The clinics like open again, everything is back to normal. I just thought you can't play with people's emotions like that. I just Yeah, I was. It was very strange.

Anyway, I went to my appointment, and from what I can remember, I just, I mean, it was raining. Even now I just don't feel like nothing's really been done. So remember the first appointment, she had a peek through my scalp with her hands, I kind of explained to her what it was how everything went wrong. And she said, I can't really see any scarring. That's a good thing. So I said okay what was the problem. But she didn't really know. She wrote me a letter a couple of weeks later. So she wasn't sure what the problem was. But she did ask if I had been under any stress. Or if like, if there is any trauma or anything like that. I am studying my masters at St. Thomas work, I was studying masters same as working full time. So I just say to her, Well, this happened. Like the first year I was on my masters. So maybe could have been it but I mean, I've been under a lot of stress and studies before and nothing's happened. So I don't know why that could have been it. But I did have braids for Christmas. So I don't know if that could have been the issue. I mean, I had them for four weeks, but maybe they were too tight. I really don't know. So I said I gave her a few of these options to write down a whole list of a longer description for me. So like, you know, go to the chemist and just get a few stuff at the hospital and then come back again. And it wasn't until next year. That was my next appointment, the process for me didn't really do anything”.

00.18.19

“So what kind of things was it that you were given? So firstly, actually were you given a diagnosis”?

“No, no diagnosis”.

“How long would you say your appointment was”?

“Say 15 minutes something like that. Yeah, not very long. No diagnosis, is there anything like this in your family and I mentioned I have one aunt that I think has alopecia but I'm not so sure, so that was it. So you know, she wrote a letter a couple of weeks later that was sent to my GP and also to me explaining what she saw, no scarring, etc and what she thinks the issue might be. She mentioned something about telogen effluvium. So she mentioned that and miniaturization of the follicles yeah Yeah, yeah, that was around like my edges. My edges have never been great but It got a lot worse during this period as well. So I'm not saying my edges are flourishing but they never used to be like this. Those are the things she mentioned. She also mentioned that my scalp is quite sore. And she gave me another ointment similar to what my doctor gave me. I didn’t see the point in that, for my scalp and a few other ointments and stuff, and shampoo, which really dried out my hair. But I felt I needed to keep going with this because yeah, I need to try. And nothing worked at all”.

00.19.44

“ So were you given like a follow up or anything”?

“so they wrote to me a few weeks later, saying my next appointment was in January of this year. And then I tried calling every time in between September and December to try and get a closer appointment. Yeah. There was nothing. So I didn't get seen again until January of this year. Yeah. So the thing is, is that this has been dragging for a long time. There's only just over a year I've been even seen twice.

So I went for my appointment again, I remember I was very angry because I waited an hour and 20 minutes for my appointment at the hospital. And obviously, I had been working that day as well. So I just remember going into my appointment with a very, very kind of bad mood, and explaining to her everything that you've given me has not has not worked. And again, that appointment only lasted like 10 minutes, she went through my hair again, having a little poke around sort of, and he again didn't know what the problem was, I told her when I biopsy Yeah. She suggested it at my first appointment, but I think the way she kind of described it really put me off. She made it seem like the absolute last resort, the last last resort. I thought because it's a last resort. And you know, we had to cut out a bit of your scalp, it sounded quite graphic. . Okay, I'm not sure yet. But I remember, when she did that first letter that she wrote to me and my GP. She said that I was not keen on doing one at all, which was not the truth, I was just not interested. And I wasn't too sure. And she told me it was the last resort.So I demanded one in January. I said I want a biopsy because you're not going to tell me what's going on. You're making assumptions. I want to know what the actual problem is. Because you’re writing me long prescriptions which is costing me a lot of money and nothing's working. Fine, we'll do a biopsy for you this time, I want you to try Minoxidil”.

00.21.53

:”Right? You remember what kind of Minoxidil you were prescribed”?

She wanted me to get the men’s strength. Men's one 5%, and she wanted me to get breastfeeding tablets.Pregnacare brand. She also prescribed me a different shampoo to the first one that she gave me.

“Can you explain why you were prescribed pregnacare? Or were you pregnant at the time”?

“She said breastfeeding tablets are like the best to use rather than normal multivitamins. I completely forgot to mention that so from my first appointment, she did actually make me do a very comprehensive blood test more so than the one that my GP, and it came back though my GP already identified that I was low on vitamin D. So i was prescribed some vitamin D tablets. Then they did at the hospital and they found out my vitamin D had improved and they also found that I was low on some sort of iron So I was prescribed one femoris Fermuray tablet as well. Right. So I just went on them continuously. And when I went in January, she still said I need to take them as well as taking these multivitamins, the pregnacare ones that were recommended to me. She also recommended two different ointments to use on my scalp as well again for the inflammation. And yeah, those were the, that's what she prescribed to me back in back in January, the minoxidil, I was very apprehensive to use”

00.23.29

“Why were you apprehensive to use the minoxidil? What had you heard or what made you feel maybe a little bit uncomfortable about it”?

00.23.29

“So I've heard, especially because she was prescribing me the men’s strength . That's what made me even more kind of apprehensive. I read that you could grow facial hair that was the main thing; there’s a lot of side effects such as headaches and just lots of different things I've read. And also the main one was that when you stop using it, your hair will fall out again because it becomes used to it. And I just thought I can't go through that again”.

00.24.03

“Um, the Doctor, did you talk to her about it, did she get to like prescribe it, and that was it. You didn’t get to talk to her about any of the effects”?

“No, it was a very rushed appointment. I came out feeling even angrier than when I went in. It was very very, she didn't explain it to me. I had to call back. This is in January and I didn't purchase Minoxidil until maybe a month and a half later. I remember I had to leave a message for the secretary at the hospital to say can the dermatologist please call me back because I need to discuss this with her about my concerns by using this, because she didn't really give me any advice and I don't want to use the men's strength either. She called me back and she just said ‘you know, everyone reacts differently to it, your hair might not fall out’ and it was just a very relax, don't worry about it, just purchase it, it’s fine nothing will happen to you’.

So I did purchase Minoxidil at the beginning of February but I didn't buy the men's one, I bought the women's instead”.

00.24.58

‘Okay, so that's like the 2%’.

” I know there's a woman's 5% out there actually, yeah, so I bought that one. And I've been using it since February, and it hasn't worked for me. I mean it’s not been long, but I've not seen any improvements”.

“was it March, April, May three months now”.

“It's been three months now, I know you are supposed to use it for longer, but I personally haven’t seen anything, but I have grown a bit of facial hair on the sides of my face”.

“so you’re seeing the side effects but not the main effects”.

“Exactly, and I used to get headaches, but they’ve gone now. Another thing that I used to get, I don’t know, it sounds really weird but when I would massage it into my head, I could taste it. I don't know if that's normal. But I can taste something whenever I put it on my head like there's something just really not nice on my mouth, but has stopped now completely. But the facial hair does still, nothing”.

00.25.51

:”Are you using the drops or the foam”?

”The foam”.

”Wow, It seems like you've just had such a rough time that we've already spoken about, I guess the last few months of your journey but, I'm sure there's a lot more because you said at the beginning that you'd been to see a Trichologist. So there's a whole proceeding thing that would have happened that would have led you to go and see them first. So it feels that you kind of been I guess a little bit let down by all the professionals that have helped you”.

”Definitely, and actually I finally took the step to see another Trichologist. When did I see her? So, in September after my first appointment I just knew that this is going to be slow. So I started to think more and more that maybe, I should see another one, try and do a bit more research to see if I can find somebody that might you know, just to see if I could find somebody else. And I did find one, and I did go and see them in November of last year, and I explained you know just what happened in my first experience at the hospital, and she was lovely,really really nice. And you know she didn't push anything on me, to purchase anything, unlike the first one where they wanted you to buy everything. She didn’t push anything on me, she made me bring in the stuff that the doctor-the Dermatologist had prescribed to me to make sure I don't have to react to anything she may want to give me too. So she also suggested to me there are some hair pills that she wanted me to try, so I thought I'll just give those a go. And there was some other kind of cream she gave me, I don't know what it was not really creamy texture is like a jelly texture, which are now within our told me was similar to Minoxidil because I also emailed her when the dermatologist told me about Minoxidil to get her advice as well, like to see what she thought. And it turns out that what she gave me was actually similar to it, but that didn’t work either. Neither did the pills unfortunately. But what's happened is that because of COVID, I was meant to have my biopsy on April 14, but that's been cancelled. And then, outside of follow up appointments, I think it was meant to be a follow up appointment for my results at the end of May, but that’s also been cancelled and rescheduled to July. So I now know I can’t do anything about that, and obviously I can't have a follow up appointment with that Trichologist i saw, because I am assuming she’s not seeing anyone either. So, I was kind of left hanging again like when I was last year when I had that referral”.

00.28.34

”Yeah, so, what has your relationship been like with your hair during lockdown because you've been at home for like maybe two or three months now. And I guess you had all these things to look forward to like okay, you know, the biopsy coming, the follow up, you know, and all these products to us in the meantime, what has it been like, I guess you can't really get in touch with those people either”.

00.28.56

“Exactly. So again, after my first appointment last year, I think I hadn't still done anything to my hair, I kept it kind of low. And I remember in November, when I went to see the Trichologist, I think when I got home a couple of days later I called my cousin because he's really good at cutting hair and I just had to cut it all off. And so I've had a shaved head pretty much consistently since November of last year. It's only now during the lockdown that I have not done it. I mean, he doesn’t live far, but I can't really I don't. Because there's lockdown, I thought let me just try and grow it out anyway and because I'm using the Minoxidil maybe it might be nice to see, you know if it is working properly, rather than me just shaving it all the time. So I have not shaved it since probably March but yeah, so it's,

it's been harder because I have had to look at my hair every day”.

00.29.57

”And how does that make you feel seeing it every day”.

“Terrible, like I don't like it at all”.

“What, is it that you see that you don't like”.

”I just see that nothing is happening, and there's been no improvement, and I am not used to seeing it, because I am so used to cutting it, like every 2-3 weeks. So, the feeling I had last year, of just feeling down and stuff, is kind of coming back, because I am having to look at this patchiness over and over again. And then i guess also, especially now with this lock down. Especially when you go to social media where everyone is getting to do something with their hair, and then I can’t do that because it’s not possible, so, it’s been hard, definitely”.

“And so, on that note like do you, I know you’ve mentioned that you told your mum about it, is this something you’ve been able to speak to your friends and family about? I guess, when you’re at home, do they get to see your hair? What’s your relationship with the people closest to you. Like I’m guessing your cousin kind of knows what’s happening as well”.

00.30.57

“He knows what’s happening and he is like, I don’t even think he knows how grateful I am to him; because he probably just thinks cutting my hair is nothing. But, for me, to have-cause now I have that confidence, I mean, I’m used to it. It doesn’t mean I like having a shaved head, but I am used to it. Everyone has told me that it suits me, so i’m alright with it now. But I don’t think he really knows how much of a help that has been for me”.

“Do you go to him to do it, or do you go to like the barber’s shop”.

“No he comes here”.

“Oh ok”.

“So he comes to my house, and he justs-he’s great. He just brings his kit, and that’s not even his job, he is just good at cutting hair. So he just brings it, and he cuts my hair and, you know, I give him a beer or something after, just to say thank you. Em, my mum’s great as well, but sometimes it’s a bit much, because she always sends me stuff like on Whatsapp..”

00.31.50

“What kind of things does she send you”?

00.31.52

“you know, just articles like, use this oil, and this thing and that thing and I am just like, you’re the one telling me i need to let things, you know, work for three months, but you’re sending me everything like, different things every single day; how am i supposed to even allow anything work if i am getting loads of stuff everyday. But, in terms of just being able to talk to her, even when it’s times when i get really teary; I am getting really teary now, yeah, she’s just great, she listens to me about it. My friends, I don’t really mention it to them very much. If someone just asks ‘oh you cut your hair’, i’ll be like ‘yeah, I just fancy the break and stuff’. I remember I went to Ghana last year on holiday, and that was a bit frustrating because, everyone was just like ‘why did you cut your hair’, they didn’t seem to understand why i cut it, and i wasn’t going to tell them i was suffering from hair loss, so yeah. It was the aunties anyway, they just didn’t understand why anyone would want to cut their hair. And i remember it was a bit annoying because, prior to, my dad was like, ‘oh, don’t worry, all the girls in Ghana have got shaved heads now’. And I got there, and I didn't know why everyone seemed shocked to see my hair shaved. So it was just a bit, yeah.”

00.32.59

“So when people are asking, I can understand not wanting to like have to like keep up, keep on bringing up the same like having the same discussion over and over, but did you feel like you couldn't say it was from hair loss”.

“ just didn't. Maybe I could but, I don't know again, I would read when my mom sends me stuff, I was grateful I just felt like they would be doing the same”.

”I can understand yeah”.

” yeah I just need to tell them, I think it's literally just my mom, my dad, my sister knows and that's it really and maybe one or two friends but I don’t bring it up to them constantly so, they might have even kind of forgotten. I'm going through this, so yeah”.

00.33.44

“Did you feel like you get all the emotional support you need from your immediate family, or you wish I was like, I don't know. I know that it can be hard when you tell someone something that they try and help you to solve it so there's that fear of getting the influx of like you know products and the gestures and things like that. But do you feel like you could just talk to them and be like, look, guys, today I'm just feeling really sad about my hair and, you know, I don't want you to do anything, I just want to be able to like talk.

00.34.12

Annette: “ I think maybe at the beginning, when I first started to notice it probably more so than. Now, I don't know, because it's been over a year, I don't know if it sounds like it's... I'm not actually sure I'm not that type of person in any way really, to express myself like that so I tend to keep things to myself in general.I think. I do know that if I am feeling down, like I've got a lot of other things going on in my life. At the moment, anyway. I do know that if I'm feeling down my mom might see me through that. But if I am on a bench, and she sees me sitting down. She does know that one part of that is because of my hair. Yeah, and I was because I think with everything that's going on, it’s starting to break a lot as well which I never really saw. I'm starting to see physical breaks. I think it's stress as well as just now my oh my goodness is breaking and there's nowhere to go. So it's a lot harder during lockdown now having to watch every day seeing it breaking, but I I don't know yeah. I do kind of wish maybe there was someone else I could talk to it about. Yeah, yeah. But at the same time, i am not that expressive about my things in general so it's a bit. Yeah”.

00.35.32

”And so, I guess. Now with like social media there's more like online communities and stuff like I haven't like you're not one of my patients you're not someone that I've seen, to help with your hair loss, but I guess you found my page like, how does that kind of thing help or like do you follow other pages that talk about hair loss and maybe like groups and stuff like have you used the online world, Twitter, Instagram those kind of places to try and I guess, build a support network maybe not like individually, you directly talking to people but seeing other people's experiences.”

00.36.04

“I am trying to do a little bit more, and also starting to follow a lot of women that have shaved heads, because I am starting to think ;ike, this isn't gonna come back again. I need to get used to the fact that if this doesn’t come back, this is going to be my hair for the rest of my life and try not to think negatively. But I have to be realistic that it is not going to grow back. I need to just get used to this. I'm kind of following more ladies who have like shaved heads. I'm not seeing, I'm not, maybe I didn't think I've got like way too much to try and follow either because I don't know what's wrong with me either. That's the thing I don't know what the problem is. If I could maybe follow people that actually have the diagnosis, I don’t want to scare myself by following- maybe scare wasn't the right word, I didn't mean it like that”.

“it can be scary like, always tell my clients when I give you a name or diagnosis don’t go to Google and look at pictures. It looks horrible, and I'm trying to like even refrain from showing certain things because when you just see it up front, it's like,

oh my god, is this what my hair is gonna look like. It can look really, I guess alarming. Like we try and cover it, or keep it hidden and stuff. We don't see it until maybe it's really really bad, or like the end stage when it’s like, more permanent damage has been caused. And I guess it's kind of hard then, to be like oh my god is this going to be my reality, or like, what do I do then, and, yeah, I completely understand what you mean about scale though”.

00.37.49

yeah so that's why because that could not be what is going on you know, so I don't know if that's healthy for me to kind of do that. So, there's a few social media people that I follow that have suffered from Alopecia, etc. That kind of thing, but I know a lot of Trichologists, a lot of black Trichologists so that's something. I just have back there anyway, to just kind of see what they have to say. But, not so much”.

00.38.23

“And so the two Trichologists that you saw where they black, with the dermatologist, was anyone black with afro hair or had experience with afro hair”.

”Yeah, so the first Trichologist that I went to, they were meant to specialize in afro hair. I think I was just when I got I was okay. It was strange because and I've noticed a lot of comments on them, the reviews are very mixed, some people that have worked well for them for others, they had that experience of me. Yeah, it was kind of the opposite of what she did or what she had, like, she would say that relaxing isn't great but her hair was relaxed. And they would offer relaxing services that she would then say that, you know, I know that using too much oil on your hair isn't great, but she just said that as black woman you shouldn’t be using oil in your hair at all, which didn't. This is why they might have struggled with the products that they gave me. It was just, her hair didn’t look like mine, that was it, basically just did not look like mine at all so just, yeah I don't know, I just that part kind of..”

00.39.35

“Disintegrated element of distrust on your side that maybe they weren't, I guess, capable of giving you the care that you needed”.

“That’s what I felt like Yeah, definitely. And it just seems like everything they said seems to counter what I've read on and kind of seen online and stuff like that. So the next Trichologist I went to, she also specializes in black hair, but I had so much more trust in her. I felt like her approach was completely different to what was told to me at the first Trichology I went to. She also said I had a bit too much oil on my hair but that I just kind of doubt, not completely stop it and I said okay that's fine, that makes more sense rather than completely, you know, not doing any more. Dermatologist at the hospital she's, I don't know. She's not black. So, I don't know where I can ever find it, I don't know if I can find a black dermatologist in the hospital, I don't know where that could be, so I don't know, there's nothing I can do about it. The whole thing is though, at my workplace there was a lady that started, where I was working, and she was also suffering from hair loss as well. That was actually one thing I would say, she was someone I could talk to about it as well as she’s kind of going through the same thing. But her dermatologist at the hospital she went to was black. And also, everything seemed a little more accelerated for her. She was getting appointments quicker and that kind of thing. I remember actually going back to my GP to say why am I waiting five six months for appointments, and someone else that is getting appointments, like really quickly”.

00.41.03

“Did you ever find out what the reason was”.

”I even met with him with a list of hospitals that I thought would do a better job than what my one was doing. The one I'm going to actually has a habit of trying to cancel my appointments like they did that first time. And he just said no you can't do that because of the area that you live in, you can't just pick and choose which hospital you want to go to. It's a really long, big thing”.

”So quickly, could we go back to the lady at your workplace. So how did you, I'm just like, I'm trying to imagine the scene. I'm a very visual person, so I imagine that you know, did you look eyes across the campus cafeteria and be like, okay, like I see you. And it is a very personal subject, how do you go up to someone and be like, ‘hey my hair looks like yours’. Do you know what I mean”.

“It was a very small team. I was made redundant in January so that really has not helped my health or mental health in general my hair. So that was one thing I think that also contributed to it breaking. But it was a small team, very small team so I mean, there was, like, we couldn't not see each other. How did we end up talking about it I can't remember”.

00.42.13

“were you friends before or was it that she was brand new”?

”She’s brand new, she’s only temporary actually. And how did we, I think it was like on the third day and I remember how to take a tube back to the office with her. And she was just saying; ‘oh like you're really brave despite having the hair so low and stuff and you know I wish I could do that, (because she was wearing a wig) but i can’t and stuff, because my hair has been falling out’. And i was like ‘oh me too’. I think that's probably how it started.

And her one was quite strange. She didn't realize what was going on. Her head was starting to thin in the middle, and she said that her hairdresser has never told her. She was really angry because her hair dresser could have warned her, and they didn't. And so, not too late, but she just caught it a really bad time and realized what was going on”.

00.43.06

”It was just like an off the cuff kind of comment that allowed you guys to really like connect, and I guess in some ways help each other. Because you feel like you know, ‘oh this is what her dermatology experience was like, maybe I can seek some more answers or try and get something similar for myself’.

Yeah, definitely. Yeah, it was, I remember like she would, I think after my appointment in January, that was the day I was made redundant so It was really not a good day and I remember after my appointment in January. She came up to me and just wanted an update on what happened in my appointment. And I told her about the Minoxidil and she said she was being prescribed as well. And I told her how I didn’t want to use it. She was the one pushing me to like give it a go. So, it was nice knowing that I could just like talk to her about her experiences and that kind of thing”.

00.44.05

“Yeah, that’s amazing that you found her”.

“Yeah, most strange. You don't normally find that in an office, very small team of 10. So, yeah, yeah. It was good, having her back for that part”.

00.45.05

“So, even after you left that role, have you kept in touch with her. Do you guys still talk about your experiences”.

“I don’t actually have her number, I don’t know why i haven’t even reached out to her, I probably should. I guess we might be in the same situation at the moment, with just not being able to have any appointments and stuff. But as that trigger point I probably should definitely reach out to her and just find out how she's how she's doing, and if the Minoxidil even worked for her or not. Yeah, I think, I think the area where her hair loss is, I don't know I feel that maybe Minoxidil might work better. I'm not sure, just based on what I have seen, it always seems to be in the crown in the middle of the head and my problem isn't

in that area. So I'm not sure if that could have been the reason”.

“you talked about your mom and possibly other people sending you like, I guess, remedies and things you could try. What things have you done yourself, outside of like you know the prescribed medication you've been given either by a Trichologist or the dermatologist or even your GP. What kind of things did you go and like, seek out by yourself that were able to, or we're meant to kind of give you some relief from the things you were facing”.

“So, it has gotten to the point where I'm only using the Minoxidil and what's left from the hospital that is, the Minoxidil and the shampoo that I have, because the ointments that she gave me, I was only meant to use it for eight weeks, so that eight weeks is long gone. So, just at the moment now, I've just found one hair oil on Etsy, it’s like an Arabian one. It also has something called MSM in it, which I kind of did a bit of research and it’s supposedly meant to promote hair growth and stuff. But I just become quite skeptical about all of that at the moment, because I've tried so many different things in the past. Before, even before my hair loss, because my hair was quite thin anyway. Just like black castor oil on my hair, it never worked. I've tried lots of different kinds of hair vitamins and all sorts of different oils and stuff and it's never done anything for it. So the one I'm using now I mean, I've been using that for just over...has it come to a month yet, I think I bought it at the end of April, so one, two,, for three weeks. Obviously I can't say, you know, speak on anything, but it gets a bit frustrating especially again when you go on social media and you see someone that's been using the same oil. I always use ‘Edge Entity’ that I saw that's been all over Instagram. Yeah, it's very very popular but I've used it twice. And, it's just never worked for me. Yeah, it's just meant to kind of replenish your edges in like three days, or something like that. And that's the thing like is not necessarily three days but you see some images of like you know week one to week four and it's been such a significant difference. Whereas when I've been using something diligently for like three months and nothing's happened. That doesn't help you either. I know everyone's kind of journey and time is different, but you know, I think if I have been using something for, I think, three to four months,I just have not seen any changes at all. You know it doesn't really instill much confidence”.

00.47.46

”I feel you, but with hair loss, it’s like you kind of want to wait for like 12 weeks. It's kind of like the magic number where you're like, okay, this is like, make or break time. And it seems like a really long time to wait. If we think like most of the things taken are working internally. And so it's like making changes to your hormones, you know, your nutritional structures of things and it's like okay that hair has to then grow. We want to see how long it takes, you know, will it be stronger, would it be thicker than like, you know, the hair previously. When you put it into that kind of context it doesn't seem like a very long time”.

”yeah, the oil I'm using now, I was checking on the website and it is meant to kind of calm down, like scalp inflammation. Because, again, my scalp is definitely not as sore as it was before. It started to irritate me a lot, so I'm going to just stick to using this oil, you know, for about three or four months or until the bottle finishes. And just see if there's any changes. I mean, my appointment is not until July, with the Dermatologist. Yeah, for a while. But I just don't know what to do. I've never been a product junkie. I'm not someone to buy loads of stuff. I don't like doing that. And hair loss is just as expensive as maintaining your own hair, sort of. It's, you know, I don't want to keep buying so much different stuff, but it is exhausting. And the only thing I'm using is just the Minoxidil and the oil. The Minoxidil is going to finish soon, the dermatologist only wanted me to use it for three months, but I found a deal for a four month pack, so I thought I'd just use it for the four months so,and next, it'll finish in June and then that's it.I'm not using it again”.

00.49.36

“So what are you hoping for, for your next appointment”.

“I'm hoping for the biopsy to happen. And I'm just hoping that they're going to be able to just, I just want to know if it's gonna come back or not. I just want to know what the problem is and if my hair is going to grow back or not. If it's not, I don't know, I guess I can live with that. It's just, yeah, I just want to know what's going on and if it's gonna grow back or not, that's the main thing. I think when she kept telling me there's no scarring, it has given me hope. But I don't know what that means, because I just can't see, sometimes my scalp feels so shiny, I am just ‘what do you mean when I say scarring’. I actually just don’t feel like anything going on at all. I also don't know how scarring can be caused. I am also very worried about what I do to my hair, like ‘am I gonna cause any scarring’ especially if I get sores on my head does that mean it will leave a scar, I don't know what it actually means.

But she didn't really explain to me”.

”Wow, it’s a lot that you’ve been going through”.

”Because I just don't know what to do, especially during this time. There is nobody you can...I mean, I don't know if the clinic is open. I can't really call and talk to anyone.

And I was even hoping that even if I don't have the biopsy, I really hope that they might be able to do the zoom thing. Because I know my dad has had an operation and he's having a zoom call with her, like the Surgery, or the doctor, whatever. Just see how things are going. And I just thought, Well, at least, even that would have been a helpful option but no, not at all”.

“So, like between the dermatologist and the Trichologist neither of them are doing online consultations at the moment”?

“I don’t know, I think my Trichologist might be doing online consultations, I probably have to double check. but also because I am just not working, I kind of need to check for a follow up appointment. With the Dermatologist No, they're not doing any at all”.

“You kind of feel left in the Lurch a little bit”.

“ Definitely, yeah, I feel left in the Lurch. So I don't know what to do. I am even getting to a point that I think I might just want to cut my hair, I left it to grow as well because I knew I was going to have my appointment, but now it's not happening. So, yeah, I just don't know what to do, I'm just leaving it as it is. But, you know, there's not that much support at the moment, because again, I don't know what's wrong with me. Yeah”.

“So, for the people that are listening to this who may be experiencing something similar or have had issues with their hair and don't really know what to do or who to turn to what would kind of like be your advice”.

“I would say, just try and find somebody that could even possibly understand, or even care to listen. I've even had a friend that said ‘why can’t you just get over it, forget about it’ and I was like wow. You can’t say that to someone until you're experiencing yourself. I’ll definitely just say, just try and find someone that's just willing to listen to you. And try and get help, don’t ignore it. I mean, I don’t know if me ignoring it at the beginning would have made a difference. Even if you're finding something's just not right with your hair, try and seek out help as soon as possible. Try as much as possible just to figure out what's going on with your hair because it's just really important I think for your own peace of mind, and mental health to just know what's going on inside your body and what's going on in your hair as well. Finding that, even if it’s just one person to talk to. It’s my mom for me. I don't do it so much now, but even if it’s that one person to talk to, to just let it all out, I think that’s really helpful”.

“And I guess like, to someone who's got an appointment coming up, or who's worried about different treatment options. How do you feel like they can get the best out of the time they spend with a professional”.

“Ask as many questions as possible. Don't feel like you're being rushed, if they are trying to rush you to just stick to time, don't feel rushed at all. If something pops into your head and you want to ask it immediately at that point just do it, because I think in my first appointment I was just so nervous and quite emotional, I just left kind of feeling; ‘what happened’, ‘what went’. I didn't even ask this and that question. I think go in there, ask the questions you might already have now, and if anything comes into mind, just keep going and keep asking. And get the number of the secretary or whoever it is that you know can always contact your dermatologist after, to ask even more questions. Just don't feel rushed and be very, very honest with them as well and, you know, don't let them kind of fob you off either, I think. Yeah don't feel bad, just ask all the questions that you want to. That's what I was saying. And also I would say maybe also see a Trichologist at the same time if you can but definitely do research with that. But I think that, that helps as well just to see what they may have to say to you”.

00.54.59

“what would you say that the main difference between the dermatologist and the trichologist is”?

“This time, with my Trichologist it was only meant to be an hour, but it was over. Because she felt really badly, because I explained everything I just told you. I think there's definitely more time especially if you see a Black Trichologist, you know, I just feel like they understand your hair a bit more, or a lot more, obviously. And, I feel like, especially the one I saw, her approach is very holistic and I quite like that kind of natural elements and stuff that she uses. I think another reason why I didn’t want to use the Minoxidil was because it just looks very medical, if that makes sense. Yeah. And so I think that was just another reason. I don't know the difference, but to me it just seems like they're more expert on hair whereas, I guess the Dermatologist, I'm not sure, I guess because of my scalp that's why obviously that really helps with them looking. I just feel like it's good to have two different people that you know, one’s looking at skin, one’s looking at hair. They might not know each other, but in your hair they can just bring everything together. Yeah, but it's just that time that you have a Trichologist, I think is just so much better, rather than that 10-15 minutes and then you have to leave really”.

“ I guess it kind of gives you a chance to kind of air out everything you've been thinking of doing, and maybe get like a really deep explanation for everything”.

: “Exactly. Definitely, but my one said, this is another thing, she wanted to know what my results on my biopsy would be as well before going back for my follow up appointments. That's another reason why I haven't made a follow up appointment with her, because I haven't got anything to tell, that's the thing. So, yeah, I don't want to book my follow up appointment, If I haven't got anything to get back to her. But I definitely think it's good to see both if you can, because you get that time, you get to ask a lot of questions as well. Sure. So I think that's the best thing. And just don't feel, (this is what I tell myself), try not to feel too down. So I would say, and just do whatever makes you feel comfortable. if you like to wear a wig, and you prefer wearing wigs, if that's what you want to do then do it. And if you want to take the plunge and shave your hair off, it's not that bad and it's so easy, you wake up in the morning and you have nothing to do. It’s absolutely fine. You know, I like to pair it out with my earrings, and I like makeup and stuff, and I get to do even more, and that kind of thing. So it's great. Yeah, I think that's what I would say. Just do whatever makes you feel comfortable”.

“Cool, thank you so much for talking with me today and sharing your story. Because, again, just listening to you like it's, it's things that I hear all the time, but I don't get to like, you know, I guess I don't really get to connect to my patients that well, and help them to understand that you know this is what you want to expect when like you know this happens. I try to prepare them as much as possible for Dermatology or GP appointments and stuff. But hearing it from someone who's actually going through it always kind of like helps people to, I guess, feel a bit more seen and understood. So, um, I'm sure that there's going to be people that are like, Yes, I completely get it like you know, I'm glad it's not just me that felt this way. And yeah, and I'm wishing you all the luck with the upcoming appointments, please do reach out to the lady that used to work with you, and your Trichologist, I'm sure that can like, I don't know, give you some advice in the meantime, or even your GP, just to kind of see what they can do to help”.

“Yeah, I will. I think what's happening now has just slowed everything down. So, you know, I know this probably may not have been the case in general. I know going to my GP would have been a long process anyway. I will reach out to the lady at my workplace because it'll be good to just have a chat. Thank you for suggesting that. And I just hope everything gets resolved because especially when I'm 28, like all my friends are just doing things with their hair and I can't really do anything. it's just, I look back at pictures I just think wow, like in this space of just over- because in January of last year, my hair was fine. So, yeah, it's just, that sharp change I am sort of trying to get over it”.

“I just thought of something I wanted to ask you. For the people who have friends or family who are currently experiencing hair loss. What's the best way to support them so I guess, say like your friends were listening to this, or members of your family. How would you want them to respond to you after this”.

“I think, just be there for them, and that would just be the main thing. Just be there for them, and I honestly would say just don't bombard them with treatments and stuff. It is a bit frustrating, I know you may see something that be like ‘this could be amazing’, but trust me, we've probably seen it, we've probably looked through it ourselves. And it can be a bit much if you're, you know if you're just sending lots of different stuff. I think you should just be patient and be there for them. And if they ask you for something, like if they ask you for a bit of advice or, you know, then maybe do it that way. But I think the best thing is just to be there for them, you know, if they need to talk or if they just got upset, or crying or anything. Just be patient, but I would definitely say, throwing things off, you know, try this and try that and try that. I've not personally found it particularly helpful. So, yeah, i’ll definitely just say, be there, and if they ask for something then maybe be receptive to that but you know”.

“Okay, thank you again. I really appreciate”.

“Thanks for doing this, it’s really important. You helped me as well, talking to you. So, thank you so much”.

“Oh no, you've done me the biggest honor, like, just by sharing your story and just being so transparent”.

Untype

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