Stop Trying to Fix It | Parenting, Protection, and Public Stares

"I flung my bag and went marching after him!" 

In this very special episode, we are celebrating our one-month anniversary and Mother’s Day by welcoming our first-ever guest to the sofa: Faith’s mum, Angela!

We’re taking a deep dive into the family side of living with a difference. Angela shares the "poignant" and hilarious moments of being a protective mother.

We discuss the transition from "trying to fix it" to "just rolling with it," the hidden struggles of a Celiac diagnosis, and why Faith ended up apologizing to a man who asked if she had cancer. This is an episode for the parents, the caregivers, and anyone who has ever felt the need to "protect" the ones they love.

From the first bald patch, to a doctors appointment from hell... to worldly advice for all mothers, carers and friends to those with a difference; an episode not to miss. 

Shoutout to:

Novo Cabelo - https://novocabelo.co.uk/ 

Little Lady Locks - https://www.littleladylocks.com/

Little Princess Trust - https://www.littleprincesses.org.uk/

Alopecia UK - https://www.alopecia.org.uk/

Follow us for more:
📸 Instagram: @sitdownwithuspod @faith_hiles @zaraborji
🎵 TikTok: @sitdownwithuspod

#DisabilityAwareness #Alopecia #ZaraAndFaith #WheelchairLife #Inclusion #RepresentationMatters #Podcast #ZebedeeModels

Transcript

SPEAKER_02 0:00

I'm Zara and I'm Faith. And we would like you to sit down with us every Wednesday. So as you can see, the setup looks slightly different today. And you might have also noticed we have a special guest. Yes!

SPEAKER_00 0:15

So today's guest for Mother's Day coming up very soon is my mum. So today's basic basic topic is going to be about how it was as a mother growing up with a daughter with a visible difference, really, and how all those trials and tribulations discussions came into play. And we've got some crazy stories which we have honestly had some fun with. So yeah, Mum, do you want to tell us a little bit about yourself?

SPEAKER_01 0:43

Yes, I'm Angela. So obviously, your mum. I'm um uh well, busy mum, three girls. Uh I am a nurse as well, part-time. And uh yeah, uh loving life.

SPEAKER_02 0:56

Loving life. So um obviously you you were part of Faith's journey as uh someone who grew up with alopecia. So we just basically wanted to have an insight into basically how that was like, basically through your eyes, if you'd like to share.

SPEAKER_01 1:15

Yeah, definitely, definitely. So um obviously normal average family growing up. Um we did a lot of convenience food, we did a a very busy, hectic, uh chaotic, just busy family life, really. Um if we weren't running around to uh dance classes, netball practice, gymnastics, you judo, you name it, we were we were just we were we were everywhere. We we kind of lived in the car for a long, didn't we? Um so yeah, so from this chaotic life, uh it was very much um right, pizza night, oh quick, quick, um gotta do this one, gotta do that one, oh another school run, another so um yeah, chaotic life. Um and I think uh that carried on because obviously your your sisters are a little bit younger than you, so with you being the eldest, um this sounds terrible, but you actually did t take priority for a lot of things because uh growing up the girls just just tagged on black behind. So um all the clubs and uh societies and everything.

SPEAKER_00 2:13

Yeah, they're very closer together in age, so they're almost like not twins, but they uh growing up they really did act like twins, like they were in each other's pockets constantly, and I was just the older sister that would either tell them no and be like their not their second mum, but like their guide through life. And even now, Katie rings me going, What have I just done? That's my younger sister, Katie.

SPEAKER_02 2:36

So you kind of had your experience and they followed on. Yeah. Okay.

SPEAKER_01 2:40

So obviously we've been it's like chaos again, chaotic family life. Um so this uh the alopecia uh complete bolt out of the blue that at the time it was like, oh, that's nothing. Uh it was uh about ten. We were still at primary school, all the girls were at primary school, the same primary school. Um all just getting on with life, you know, no great dramas really. Um it felt about ten. Uh I used to brush all the girls here, it was like line them up uh one after the other, yeah, like uh like you do. And um I remember brushing her hair this mor this particular morning, uh, and I thought, oh that's weird. And I've never noticed that before. And then you think, oh my god, how have I never noticed that before? How long has that been there? And all it was was a little, a proper, neat square out of the bottom, the base of a neck, uh out of the hairline. I was like, oh, that's really weird. Bearing in mind that all the girls had long hair, they all went dancing, uh, they all went swimming, so I I did the hair a lot. So I thought, how have I missed this? Um so I thought I didn't think anything more about it at that time. Then all of a sudden I started paying a bit more of attention uh over the next few days, and I thought the hairline above the ears as well was quite high. And I thought, again, at the time the fashion back back then, because you're very old.

SPEAKER_02 3:59

No, the fashion the old days.

SPEAKER_01 4:04

Again, the in-fashion was like either some up and some down, or it was like a big high ponytail.

SPEAKER_00 4:08

To be fair, this was 16 years ago and that was the scrunchy high ponytail, slip back, yeah.

SPEAKER_01 4:14

Um so obviously uh I was thinking, oh, tight ponytails, things like that. Um but we we did actually go to the doctors because um I think looking back on photos, you think, what on earth? A r the really it was it's such a lot happened such in such a short space of time. But at that time, you didn't because life was so chaotic, you just it just went on and on, it just rolled on. So we took you to the doctors. I think we'd found a little patch part way up by this time. Uh so the little patch at the back, and I and it was starting to thin. But I think by bearing in mind faith would be like 10. I thought I'm not I'm not, you know, like panicking child. Uh I can panic, but not child. Um so went to the doctor's, what do you think about this? Parted hair, and I'm thinking, oh, and it was perfect, like almost like a perfect round circle. Yes, yeah. Um it actually almost in the centre of of a hair at the back. Uh so there's a little square at the base, had the high hairline, but you can again it was it was just like quite taut, it looked quite like quite taut, like um like you had put a little like a really tight ponytail, um, and then the little perfect, perfect circle. Well, the delightful doctor. But I only I think back now and you think, what on earth just happened? Yeah.

SPEAKER_00 5:30

Just in hindsight, this is my dreadful diagnosis story.

unknown 5:33

Yeah.

SPEAKER_00 5:33

That I think I've only told once or twice, to be fair, because this was how we actually found out I had alophisia and it was yeah, ruthless. This was what kind of set up my opinion of going bald and being bald. Yeah. And almost like I don't want to be bald because that's a as you'll hear the perception he put into our braids at the time. Yeah.

SPEAKER_01 5:55

Yeah, it w it was horrendous. Uh the GP uh at the time, I don't think tact came into it. It w considering it was dealing with like a ten-year-old child. Um, he was talking directly at me, but I'm thinking this is about faith as well. And we've I've always um I mean it's one of them children I don't believe in the children should be seen and not heard. You you know what I mean? It's it's happening to you. You sh and you you weren't a a submissive ten-year-old, you were quite, you know, you had your own opinions and your own um thoughts and feelings, and because it was happening to you, you you would want to know what's going on. So the the GP then came out with the oh, I think it's uh blah blah blah I was like, what was this? Alopecia Ariata at the time. Yeah. Uh and it was like, okay, but I was I'd heard of alopecia, but uh only because of uh my background and yeah with b the medical background, the nursing background. Um but again very new little very little about it. The next thing a b printer's going berserk printed out all these uh like printout sheets. I was like, what's this? Clipped them together with a nice little paper clip, very neat, and handed them to Faith. I was like, right, so ten-year-old a wedge of all this paperwork, and it was almost like okay, bye then. I was like, oh what's just happened? Then as Faith's flicking through these these pages, I don't know whether you you remember the story as vividly as this, Faith flicking at 10 through all these pages. I'm glancing over and seeing all these horrific pictures and images. It was like, what the hell she's just giving her? What is it what is he just giving that baby?

SPEAKER_00 7:29

It was like shock therapy. Yeah, yeah. Because like looking back now, they weren't horrific, it was just it was just different variations of alopecia. But from first learning about it, it's terrifying not knowing what's going to happen. Yeah and ter also with no cure or no real treat because you go to the doctors, wanted to be treated, there was no treatment, it was just information.

SPEAKER_02 7:50

It's also eye-opening because it's like you think it this was like 50 or 100 years ago. This was literally what, like less than 20 years ago? 16 years ago. So this is crazy.

SPEAKER_01 7:59

Yeah. And he also he also said, because of the high hair load, he said, uh, do you pull your hair? What kind of question's that? Because obviously reading into it after there's the hair pulling to have the trigger tillomania.

SPEAKER_00 8:11

Yeah. And it's like Which was news to me only a few years ago. I found out about that. So there's just no awareness of it all. It's just slowly there is a lot more now. Yeah. But back then there really was minimal.

SPEAKER_01 8:22

Yeah. Yeah. And I and I'm like, what kind of question is that to ask that? So uh again, not not seeing the significance. So we came out of that quite disillusioned, really. Burvin in my faith was she looked petrified coming out. It's like, how how do you um drag a child's mood up from this? I think McDonald's worked a treat, but you can only get so many Mackeys to boost your mood, can't you? Yeah. But uh yeah, that was um That was a moment. That was a that was the yeah.

SPEAKER_00 8:49

But that day actually significant signified how I felt about going bald from then. So I just because he made me feel so I guess dirty for having my hair full. Unusual. Yeah. So I was like, oh no one can see this. Yeah. Because that's how he literally made me us feel at that point. So from then on until I got my first fig when I was 12, it was how do I hide this hair loss?

SPEAKER_02 9:12

And I think that's what's important is like that first I don't know how to describe it, but like that that first interaction with you and your alopecia could have made a world of a difference. Yeah. And obviously now you you've grown up and like you've come to that realisation for yourself, but it could have gone so much earlier throughout your um teenage years as well, which I think yeah.

SPEAKER_01 9:35

Just said if you felt like it was um something shameful and to cover up because how it was delivered. Yeah. Um, and so we spent literally the next couple of years hiding or trying to hide it, which well, that was painful. That was traumatic. Um, tears on all sides. I mean, I didn't I didn't never brought down in front of Faith because you just can't. You do anything, all you all you want from your child, all you want when you have children, all you want is for them to be happy and healthy. That's all you want in life. And it's like I at that time I would you felt like you were failing as a parent, as a mother, as a but at the end of the day, uh you you felt so helpless to to this situation that was happening to your baby, baby.

SPEAKER_00 10:19

But I'm well and threatened. Oh yeah. So now we may as well go into a little myth that I think we believed as well for quite a long time that the hair loss was due to stress. Yes, that alopecia is very common.

SPEAKER_02 10:33

Like I even I, before having met you, that's what I used to think that what would have caused alopecia.

SPEAKER_00 10:40

So this is yeah, very common. So I'd say stress is an underlying factor of it all, but with alopecia actually being in autoimmune conditions and autoimmune conditions coming in pairs, there's most likely something else going on behind the scenes. Yeah. And so for me, it was my celiac disease. So gluten intolerance for those unfamiliar to that term, it's a very extravagant term, celiac disease. It sounds so dramatic, yeah, which it can be, but in other terms, when I then started to eat gluten-free, my head did actually mimic that and start growing back. And I think even trying to eat gluten-free was a journey for us both as well. So, yeah, but that's the myth for today that not all alopecia is due to stress. Some sometimes it's genetic and hereditary, other times it's just one of those things, hormonal changes. You see it in pregnant women sometimes, hair thinning, and male pattern baldness is actually androgenic alopecia, which is um thinning of hair, male pattern baldness, which women end up having as well. Having, yeah, female pattern baldness.

SPEAKER_02 11:41

Yeah, that's our interesting myth which is totally enjoyed. So we've also talked about like how it felt seeing alopecia through kind of like a professional, we call them professional, didn't seem quite professional, did it? So we've kind of spoken about that, but kind of we wanted to know how you felt about other people's perceptions, like more more people in your daily life, uh, when it came to uh faith and her going through alopecia. Do you know what? I actually I think I should write a book, actually.

SPEAKER_01 12:12

No, I won't. But gosh, that would be great. That would be fun actually. You know, when you think back, it's only when you ask these questions, you actually think back and you think, oh my gosh, do you remember this situation? Do you remember that situation? Um, but thinking on about that, um well, one quick one of the health professional, uh, the woman that we went to, all we wanted was the uh a wig at the time. Um, and uh she was like, Oh, you're such an inspiration. Oh what you're doing. What are you doing? Yeah, yeah.

SPEAKER_02 12:39

We've meant we've talked about this many a time, and it's like, why are we seen as inspiration when we're just living every day with the cars that we're dealt with? Yeah. Well this woman was like started crying. Oh my gosh, just bear in mind I'm 12. Oh my gosh.

SPEAKER_01 12:54

Yeah, yeah, because we spent all that time covering up uh the big patches, but then obviously when the top of the hair went, that was the hardest bit to cover up. And and do you remember the old neighbour? Uh uh he said to me, uh Angela, he said, uh he said, Yeah, yeah, the the oldest girl, he said, uh, what does she do with her hair? I like it better when it's down, meaning when you were wearing a wig and my fist was clenched.

SPEAKER_02 13:14

I was like, I was like, Angela, oh I didn't know this.

SPEAKER_01 13:18

Oh no. It was a very elderly gentleman, but I thought I'm gonna punch her any second now. But I didn't, I refrained. I said, Oh, I said, that's nice to know. Keep your opinions to yourself. Thank you.

SPEAKER_00 13:30

She's like 11, 12, me yeah. But definitely a 12, the aim was for a wig. So like we were going to that. They called it it was dermatology appointment, wasn't it? Oh. Which is weird because they think alopecia was a dermatology, but it's not really skin, it's autoimmune and it's hair. So the best help we actually got was going to a hair specialist, um, a hair a hair clinic, wasn't it?

SPEAKER_02 13:52

I wonder if that's still the case for people going through alopecia now. I don't actually know, to be fair.

SPEAKER_01 13:57

But we we we slapped all sorts on your head, didn't we? Oh my gosh. Creams, lotions, portions at the time you olive oil. Oh, oh gosh, it's a good job we can laugh about it now, but at the time it was so much. Yes, so other as well as the delightful neighbour. Um, we were actually, we were all all the girls, myself, Faith and two sisters, shopping in Preston. Uh, this particular time we're just in one of them, just bimbling around. Uh and I think oh I think also as well, um, especially since since you've buzzed and gone, you know, natural, um, you don't realise how many people stare. Then all of a sudden it's like, oh, what are they looking at? What like what are they looking at? Oh yeah, I forgot. I forgot. You you live with it, you've adapted so well amazingly. But at the time it's like, what what what are they staring at?

SPEAKER_02 14:49

I think when you're living through it and like you live with someone who is living through it, like yourself, it's kind of becomes the norm and it's you see it for what it is, and it's it's obviously there's like complications behind it, and there's you it took a while for you two guys to get here and for face to get here, but at the end of the day, it's like how she's dealt with it and like how I'm like, how do I explain myself? But I I don't know how to say it, but like it's almost almost because it's not a big deal. Yeah, it becomes so normalized.

SPEAKER_00 15:19

Yes, and I actually spoke to Katie and Rachel, my two younger sisters, about this, and they kind of just thought that I was having funky hairstyles growing up. And like me and my sisters would tease each other, and she would call me some names and I would cry, but it wouldn't actually upset me because I knew she was just trying to tease me and get reaction, and that's just sisters growing up anyway. But even then, they didn't see it as an issue or a problem, they just saw me as big sister Faith that had some interesting hairstyles, you know, and wore and wore a wig to school, yeah. Yeah, and even then now when we're out and about I mean I forget I'm bald. Yeah, like so many times I'm like, why are people staring? Oh yeah, I'm not got my hat on, that would be why. Yeah, like yeah, my perception of myself has changed, and also perceptions of other people naturally change.

SPEAKER_01 16:02

Perceptions with the younger two, group again, just growing up with being in that environment. I remember having to like feeling like how to protect faith that bit more, and it's like that, don't say this, don't say that, don't be cruel, don't you know? But I remember Rage Pave, keep your hair on, and it's a very lancashire saying, but like don't lose your rag. But I'm gonna I'm gonna throttle you, you know, you know what I mean? You're little beggar. You but at the time absolutely we you can laugh and proper belly laugh and yeah, we do laugh now as well. Uh but at the time I was like, Oh, you little minx. There was no malice in it, there were just children growing up, but it was just their way of teasing me as I would tease them. Yeah, you know, so but I think one of the uh more poignant ones for me that I actually thought, and she really need to calm down. We were with the shopping, bachelor shopping. Um again, and uh I I don't know whether it's a generation thing thinking about it now. There was an older boy, an older bloke coming well we walked into a like a jeweller's shop uh and this bloke was actually coming out. Now, how we walked in, I think Faith and Rach uh walked in first, then me and Katie were coming after. And it was almost like we we probably didn't look like we were together. So as Rach and Faith walked in, this old boy passed like that. He clocked me and went as if to say, look at that. I swear, my blood just boiled from my toes straight up, and I was like, I flung my bag at Kate, went, Oh that. I went marching out the shop after this bloke, and I was like, I need to say something. Because at first I thought, no, leave it. I thought no, I can't. I flung um like I said, flung my bag at Kate, went marching out. I went, I tapped him on the shoulder very tactfully went, excuse me, very nice. And he was like, You're right, love. I went, and I just led into him. I said, You do and I just I just said, You do know. I said, This isn't technically a a lifestyle choice. I said it wasn't it was a a fashion statement. I said, She's no hair, so she's got a condition, and as um I suddenly ramped and then came back down as I started to explain. I'll give you a life lesson, young man. In your 70s. Uh, which I think a lot of people so like when people stare, a lot of the times it's not a judge you're like, oh my god, you know, like what kind of fashion statement? It's I think uh it's curiosity.

SPEAKER_00 18:28

Yeah. Yes.

SPEAKER_01 18:29

Um I know we've asked in the past, uh there was a again an elderly gentleman we were at a Christmas fair um and he said, Hey love, it was so cute. Hey love, is it cancer? And you think, oh my god, but you and then you think, and then you feel guilty. Yeah, you almost feel guilty.

SPEAKER_00 18:46

I remember this because I I was young still as well, and I was wearing my headband because I just hated wearing the wigs, I could never wait to get them off. And um, so the fair we went to, I did wear my headband, and I think you saw the patch at the top of my head, or it didn't cover well, like but I just didn't care at that point. I just didn't want to wear this wig. And he did, he actually specifically said, Do you have leukemia? So I was very pale anyway. Yes, and so um so he just put, I guess, put two and two together, creating up a story in his head, and I felt like I had to say sorry that I didn't. Oh, like apologised that he got it wrong, and then I felt guilty, and I was like, Ha, this is a really weird. But from talking to other alopecians online or in person, it's a common question we get a lot, and to approach that of like, no, I don't, I I have alopecia, it's almost like it's yeah, it's a strange one to get around, really. But I don't completely understand where the miscommunication, that perception comes in.

SPEAKER_02 19:45

But I also think even if you did have cancer, you shouldn't ever outright ask someone. It was the most situation. I think, yeah, that's just me.

SPEAKER_00 19:56

That's true, actually. That is very true.

SPEAKER_02 19:58

So yeah, it should never be that should never be the question to approach someone firsthand.

SPEAKER_00 20:04

No. Yeah. I mean, even now I get it. Ever even now when I'm working, I get asked that question and I'm like politely, no. No. Like, no. The older generation is is a great are great.

SPEAKER_02 20:16

I once had the gu this guy come to me and he was like, I will pray for you tonight. I was like, okay, you do that. I don't need it, but thanks.

SPEAKER_01 20:25

Yeah. I'm expecting a Lazarus moment. Yes.

SPEAKER_00 20:28

But yeah, I've I've had a lot of like prayers and things come my way. So obviously, with everything we've been through, is there anything now looking back that you wish you'd done differently? Because I think we all had that every day. Like, yeah, I wish I could go back and I would have said this, and I would have said that, and I would have done XYZ. Do you have you had that moment with anything?

SPEAKER_01 20:45

I think in odd circumstances, I think I might have in in certain situations, I think I might have reacted probably differently, like or not reacted. Um but I think that's that's just the mother protecting thing. Um But I think I'll be honest, thinking that question, um I think because you just every day is a school day, you just go along with it. You're just learning as it's a constant, yeah, constant um learning curve.

SPEAKER_00 21:13

Yeah. I think the saying everything happens for a reason is very ponent for this. Yeah. Poignant, ponent, poignant for this. Yeah. Um she's getting there. Learning moment, I don't know how well how that word says now. But I think all the experiences I have had has led me to who I am today and how confident I am. Yeah. But it also gives me that resilience for the next person that's struggling to give that advice on how I dealt with it at that time. So yeah, that's incredible to look at. But I will say thank you for how everything happened, I guess, and all the support I got because I was grateful to even have the opportunity to have a wig and to have a new wig every six months because that's almost like the timeline. Because it's very it's not normal to have multiple wigs and it's very unrealistic. As well, especially to get realistic wigs, they are so expensive, and I was uh very fortunate to be able to have a choice back then that it was an option for me. So I'd just say everything that happened, I'm very grateful for. So yeah. Mother daughter bonding maybe.

SPEAKER_02 22:19

Now it makes us that this was going out on Mother's Day. Love that. So we've obviously known about your experience, but if you were to go back, what would you have wanted to know as a parent going through this with face?

SPEAKER_01 22:35

Well, yeah. Um so like obviously we're just saying it's a it's just that it was just a constant learning curve. Um I think knowing about support groups um might have been a uh beneficial, but I think it's like at that time, um I think you that I was that focused trying to make things right or try trying to make things better. Um so I suppose now going down the line, um probably try and be a bit more relaxed about things, or uh if other parents were going through things like this, um you know, like the alopecia, um it would have been nice to swap stories or swap circumstances uh and support for each other or just like a sounding board for each other, um, because sometimes it can take over your life, yeah. Uh which you try not to let it because it's um it is just a part of life. Um but I think thinking about it now, um the celiac, because obviously with being autoimmune, they usually come in pairs or multiple at the moment.

SPEAKER_00 23:39

I'm adding on. Don't they give me the list?

unknown 23:44

Oh fate.

SPEAKER_01 23:45

Yeah, so I think um that was probably harder to deal with than the alopecia was almost because that impacted more on uh the family as well. Um, and as a mother, you just want to do the best for your kids and um you know, like it just for the basic just like pizza night. It's like, oh god, we can't have pizza night anymore. We can't go to Macedys, we can't have like emergency maxed, you know. Um, so you it's how you you rethink your whole family life, and and that did impact, the ripple did impact, so probably waste um like a support group a bit more um geared to that. And I'm not the best cook, so to cook from scratch was yeah, eventful. But again, we it was the the best way, and we we we all learnt together really massively.

SPEAKER_00 24:37

Fantastic key. Still now I'm learning. I've I've recently learned that air fryers are actually very damaging for celiacs. If you cook something with gluten in your air fryer, don't clean it or just put a tray on there for the celiac food. All the crumbs or all contaminates it. And I was like, oh my gosh, that is cross-contamination in its form in an air fryer. And I had no idea. So I then gave my air fryer a rinse at home. Um me and my partner now have a separate section.

SPEAKER_02 25:06

And um on that note, just for anyone watching or listening, we are going to put some resources in the bio um, specifically for alopecia UK, who are obviously a char charity surrounding people going through alopecia, and through them you can kind of get in touch with support groups if you yourself are going through it, or you have a family member or someone you know that's going through it. So yeah, if you're interested, just check out the buyer.

SPEAKER_00 25:32

Yeah, there'll be alopecia UK, Little Lady Locks, which I do a lot of work with, and I love that charity. Um, Little Princess Trust is another one. I actually got one of my first ever human wigs from them. That was my favourite wig when I was 14, I think. That one. I wore it everywhere. I did love that wig. And um also m I would say following people online, yeah. Um because that was a big one for me as well. And there is more online support groups out there now than there ever was back then. Um this will all be down below for those.

SPEAKER_02 25:59

And I was also going to say if there's any that we've not mentioned that you know of, please let us know in the comments and for everyone else, but as well as us. Yeah, we love a learning moment. Yeah, we do. As you are our first guest. So, yeah, we wanted to know what advice you would give to any parents slash carers who are supporting someone who is going through um someone with a disability slash a difference.

SPEAKER_01 26:23

The only think about the only advice I would give, um try just try to be relaxed about it because it's not the end of the world. Nothing is a disaster. Um and I think to be honest, I think let the person lead the way they want to be led and just support them rather than try and fix the problem. Uh you you you you can do as much as you can, but um if you don't manage to fix the problem, just roll with it and try and be a bit more relaxed with it.

SPEAKER_02 26:53

Yeah, I really like that. Yeah. I think yeah, a lot of people could relate to that, yeah.

SPEAKER_00 26:58

So thank you so much, Mum Angela, for coming on today. We have come to the end of the episode, so thank you everyone for listening or watching. And we hope to see you again next Wednesday. Wednesday. Bye. Bye.