Loss of skin: Assya Shabir
Assya Shabir: Hi I’m Assya, and my loss is my skin, because I have a condition called Epidermolysis Bullosa. Why is it a loss? Because I’ve lost the normality to live a normal life, so yes, it’s a big loss.
Claire Sandys: Welcome to The Silent Why podcast. A place to share conversations around grief and loss. I’m Claire.
Chris Sandys: And I’m Chris. And this is Episode 9 on our journey to explore 101 different types of loss. We know it isn’t always a feel-good topic, but we believe hope and joy can emerge after the most challenging times. And we love meeting people who go that extra mile to support others facing loss.
Now, the pain of loss in this episode isn’t just emotional or mental, but physical too.
Assya: If I’m going to try and do something, it’s going to hurt no matter what I do. Even with my nephew, like I get a wound a lot on my flank, which is a side of your rib cage, and whenever he hugs me, it is so painful, but I'm just like, do I enjoy the hug? Or do I cry? At the same time. Cause it's, it's hard to explain to a three-year-old he doesn't know what he's doing.
Claire: A couple of weeks ago, Assya Shabir popped up on our Instagram feed.
Assya lives with severe Junctional Epidermolysis Bullosa, also known as E.B., or Butterfly Skin.
Assya: I was always told I was different, but I didn’t realise how different I was until I started maybe Primary School, Year 1, or 2. Then I saw the difference.
Chris: This gut-wrenching condition leaves her in constant pain daily and causes her skin to tear or blister at the slightest touch
Claire: But it wasn’t just the extent of Assya’s loss that made us get in touch with her (and she posts the full extent of what EB does to her body on her Instagram feed) - it was her underlying message of hope, joy, and faith.
Assya: EB’s been there for the whole of my life. It’s not going to change and it’s not going to go. It'll have its good days, bad days and ugly days, but it's there. I've just got to live with it. I can't let EB life my life, but I can live its life.
Chris: Assya lives in Birmingham in the UK with her mum and brother’s family, she’s a devout Muslim, and an ambassador for the Acorn Children’s Hospice and she’s really keen to raise awareness of EB.
Claire: We know you’re going to love Assya and be inspired by her as much as we were, we also had the pleasure of meeting her 3-year-old nephew, who sat next to her for the call, he’s one of two profoundly deaf children in her family, and was impeccably behaved...
Claire: It'd be really lovely, just to start with you just telling us what Epidermolysis Bullosa is. I've been practicing just so I can get it right!
Assya: I was going to say, well done!
Claire: I thought I can't go straight in with EB, I need to know what this is.,
Assya: Oh, that's so cool.
Claire: Yeah, if you could give us a rundown of, of what that actually is and what is happening in your body with that. That would be great.
Assya: OK. EB is the fact that, as a healthy person, you have a protein that joins the skin's layers together, and we're missing the layers in between, that gels it together. So, in my skin fluid builds up and creates blisters. And with that is that even with a slightest rub or a knock, I could either blister straight away, or the top layer will completely remove off. So, you see raw skin underneath. Yeah. And it's all over, head to toe, inside as well. So, I can get them on my organs, my eyes, my mouth anywhere is possible. The worst places you could think of as well.
Claire: How long have you had that? Has that been since birth?
Assya: I was actually born with it. Yeah. It's genetic disorder, so I don't like calling it a disease. I'd be like, a disease is something that, you know, what's going around at the moment, that's like a disease. Whereas Epidermolysis Bullosa, a.k.a. EB, is like, you know, something that has happened because of a gene default. So, it's something that happens to certain people, not everybody.
Chris: And, and even within that, there are a few different levels of, of EB, is that right?
Assya: Of course. Yeah.
Chris: And yours is one of the more severe?
Assya: So, there's four different types, so there's Dystrophic, Junctional (which I have), Simplex, and they've got another one, which I can't remember, cause it's something that I recently learnt. And they are the four main types, but with Junctional, there are different types within that as well, currently there's a lot of research going on regarding Junctional EB. Which I'm learning about recently as well. So, I'm looking forward to the new findings.
Claire: And do you have any siblings? What was your upbringing like?
Assya: Yeah, I have an older brother. He is three years older than me and he's married with children. And then my mum was due to have another baby after me, but unfortunately, she had a miscarriage at seven months and they knew that she had EB as well. So, it would have been a little sister, but it just wasn't meant to be, unfortunately, so she passed away.
Chris: Wow. And so, you must get asked what, what's the most common question that you get asked about living with EB?
Assya: A lot of people assume that it's like a burn at first. Cause obviously with the pigmentation and the hand deformities, you'd think it is burns. Or sometimes they think, oh, it might be eczema because they change a pigmentation on the face maybe, but they all just seem to ask a lot, especially in my Asian community, they asked, have we done this? Had we used this? Have you used that? I'm just thinking, unfortunately, none of that works like, you know, like the black seed oil and certain herbal remedies and stuff, they don't work at all. Tried it, done it, it's just not going to happen. And then they're like, okay, what else can you do? And, you know, then the other thing is like, if it's a male, a friend or something, then they have a question regarding the physical side of a relationship. Whether you can perform that or not, and it's like, well, would I asked you, if you could do it? You know what I mean? Like, does it work? So, it's like, that happens a lot as well with certain people, but it's just, mainly it's regarding what I have more than anything else. And even if you try to tell him, you know, it's not curable unfortunately, there are always are suggestions, that I get left, right, and centre. Which is nice, but sometimes they can be very annoying.
Chris: No doubt, there were years of your, your first few years on earth that everything that was going on was not something you'd take in. And then suddenly you start to become aware of ow this hurts.
Assya: Of course, cause like, you know, like it's weird, I'm a child you're so resilient to pain or you're not aware, obviously you see it, not until you're a certain age, maybe five, six years later, I realise I'm different, I look different, I've got different things on my hands and face, you know, I'm dressing differently. My hairstyle was so different, I had like a tomboy cut that my mum used to give me herself, with the bowl, and everything else, but you know, it was one of those ones where I didn't know different from what I was having done. I was always told I was different, but I've never understood how different I was until I started maybe primary school. So when I was in Year One, Year Two, then I saw a difference. My brother, bless him, used to have a really cute nickname for me, The Mummy, because I used to be wrapped up in dressings all the time from head to toe. I was always in dressings and I used to always think, why am I The Mummy? Then I realized, wait there, I get it now - dressings. So it was, it was hard at first. And then, you know as a teenager, you see everybody else doing normal things? But I never had a sleepover, I never had friends come and stay or play with me at home, because either some parents were a bit wary or whatever. We lived in a joint family from when I was little, as a child, as a toddler I was in a joint family and some of the family members wouldn't let their children play with me because in case either I got hurt as a thing or they didn't want something to be caught. That's another thing everyone seems to be thinking. Back to your question before, what does everyone think I have, it's is it catchable? Is it contagious? It's not contagious. If it was contagious, I wouldn't be out in the world, or living life to the max, as much as I can, I'd either be sitting at home or in a hospital somewhere.
But now I think I understand what's good for me, what's bad for me, skin wise. And I also know what can help me, what not and what not to do, what I can do with certain people, so it's nice. Even with my nephew, like we have a cuddles and stuff, but sometimes it can be really painful. Like I always, I get a wound a lot on my flank, which is a side of your rib cage, and whenever he hugs me, it is so painful, but I'm just like, do I enjoy the hug? Or do I cry? At the same time. Cause it's, it's hard to explain to a three-year-old he doesn't know what he's doing. They don't understand that they're going to put you through pain, because they don't know what it is. So, it's hard, it's harder now, I think in a way to explain to children what I'm going through, but now I think I know what I can and cannot explain, and I can see the difference around me as well
Claire: From, from what I've read, on your Instagram and things, it sounds like you're a bit of a miracle that you've got this far, that EB is generally something, so how, how has that been kind of exceeding expectations?
Assya: It's been a blessing in disguise, I guess, like a lot of people were Junctional EB, the type that I have, they live maybe to the third or second birthday maximum, depending on how severe it is as a, as a young child, also upon birth, how severe it is, as well as their skincare routine and everything else. I think it's a big thing. And I'm Muslim, so I believe in God and I feel like everything is a part of your spirituality as well, if you believe in positivity and success and it's going to happen that way, if you're going to be doom and gloom about something and think, oh my God, it's not going to happen this way, this is going to go wrong, it will eventually go down that path. And I feel like, you know, it's always been a blessing to say, you know, I've reached this milestone, this milestone. Everyone always goes, why do you celebrate your birthday so big? But my mum's always said that we never knew that she was going to live this far. My mum, when I was born, my mum wasn't even told that I had 24 hours to live. She didn't know any English, she was from Pakistan originally, and you know, she didn't know nothing. And then when she found out she was shocked that no one told her in the first place. And then my mum saved my life by giving me her expressed breast milk, and increasing my blood pressure because it was really low, and then from her dripping it into my mouth slowly. You know that little pink sponge thing that they use to wipe your lips, she used that to squeeze the milk into my mouth because obviously I couldn't breastfeed from her breasts herself, because the blistering around my mouth, it was hard for the suckle and to get a grip of, so that would blister straight away. So that was the only way she saved my life. It was just one of those things where every year, the hospital counted, she'll reach maybe one, maybe two, maybe three. And I, I found out about four or five years ago, maybe six years ago, I went to my primary school and my head teacher told me that when I was leaving for private school to go to secondary school, my head teacher asked my consultant then, do you think she's going to survive? Do you think she'll actually make it through high school? And they said, we’ve stopped counting, we didn't expect you to live to her 10th birthday. So, they're like, we didn't know she could get this far, so we're not going to count no more. So that's why I feel like I'm a miracle in that sense. And I'm grateful that I'm now 34 this year, I turn 34. And it's a blessing, I have good days, bad days. I've had some really bad turns where I got to call family in or extended family to come and say goodbye to me, but then it's like; 'I'm still here! Sorry.'
Chris: What is that like, to have members of the family come in and say goodbye to them, and to do that more than once, what's that been like?
Assya: It was hard. And the last time I was really really ill, I got a high blood pressure, my throat stretched, and then I got ill. And then I was like continuously vomiting a lot of blood as well, and I had internal blistering a lot as well. And I think I got a sepsis, this was quite a few years ago. And my mum was really upset and they were saying, you know, you might as well just call the family over, because we've got to think she's gonna make it this time round. Because it was that bad. And hearing that was harder, my mum was there, and you know, obviously my brother and my sister-in-law and the older two nieces and nephews, and it was watching them, see them get upset, was harder, more than anything else. Cause you know, they've been through hell and back for you, for what, 28, 29 years, maybe 30 years of your life. Now your body's giving up, like, why would it give up now kind of thing? You're trying to force it not to give up, you just want to fight the urge to give up as well, just for their sake, cause they've been through so much as well, and I was like, no, I can't do this now, and I'd be lying there in bed, like subconsciously praying to God going, I know this is a test and I know this is just one thing to show that how patient we are and how connected we are as a family and united and how much we have faith in you. Just please help us get through this. And I've always thought, you know, it worked. Just knowing that, there is an angel there that protects us all the time and he's there all the time and that got us through that thing, but seeing my extended family come and say goodbye, and it's like, wait, what's happening? I'm not going, like you can say goodbye, but I'm not going to go anywhere. And it's not as if I've gone already, you crying like I've literally left the world. After that, I told my mum, if I ever die, don't cry. Like literally don't. I don't want all this 'waaah' stuff happening!
Claire: Your poor mum! She must have been through so much.
Assya: She's been through so much, bless her. She's a single parent, so he's been through hell and back, but she's my rock. She's my queen. If it wasn't for her, I wouldn't be here.
Claire: What is her, how has she done that? Cause to, to, to watch your child grow up like that must be just so painful.
Assya: I think, you know what, for someone who was, I wouldn't call it illiterate in a way, because she knew how to speak, but she didn't know English per se. She was married at a very young age, came to this country, got married here actually, and then, you know, her marriage wasn't the perfect match, shall we say? And unfortunately, if just wasn't meant to be, and the reason for that is that, you know, my father, a.k.a. sperm donor, wanted my mum to give me up, and it was either that or divorce and unfortunately it ended in divorce and, you know the way my mom literally rose from all that. trauma. Hats off to her, man. Literally, if there was an award for the best mum in the world, she's got it. But literally I was glad that I was blessed to have her as my mum than anybody else, because she is one strong cookie, like nothing breaks her, nothing phases her, and her faith in God is above all, she says that, you know, if it's meant to be, it's meant to be. It's not, it's not. That everything works out with His blessings, she went and fought for me. And, you know, she did a lot, she used to work two jobs, brought us up to be the best humans that we can be in our ways and, you know, credit to her I feel that she's what's made us who we are.
Claire: Yeah. It sounds like you're a testament to each other.
Assya: Of course. Yeah.
Claire: So, tell us a bit about what it's like, day-to-day for you.
Assya: Ok, so I'll give you an example. So, this morning, I was in moderate pain, but it was still quite painful in certain places, like my head was hurting quite a lot and my foot is hurting me at the moment, like my shin area quite area is quite bad. I'm sure you've seen it on Instagram, in my graphic pictures, right? Yes. That was quite painful, but otherwise I was okay. I've got up reasonably okay. I didn't struggle this morning, not as much as I normally do. Unfortunately, I've also got osteoporosis, so the winter, it does not help at all. So, like the minute I get up I feel like I'm in aching pain and everything else. So today was a good day, I was able to get up without stuttering or, you know, taking it slowly at a time and it seemed okay. But by the afternoon I was tired. I was exhausted. And it's very cold today in Birmingham, like extremely cold and my fingers, felt like they were about to fall off. So today has been hard in that sense, where the skin's hurting me, even though I've got no blisters on my fingers, like no new blisters, but yesterday was another whole different story, I couldn't get out of bed. I didn't want to me, I'll just felt like, oh my God, why do I need to get up? Can I not just stay in bed and roll about? I don't want to do this today, but I was like, nah, I've got to do it. Got to get up, got, get the kids ready, take them to school. I was like, okay, that's what gets me at their house and out of bed this morning. So having something to do is a motivation as well, but knowing that, you know, the family support is there and if it wasn't for them, then I wouldn't want to do anything. And with each day, it's different. Like my skin will be OK in the morning, by the evening I'll have so many blisters it's ridiculous. It's happened to me before. Like, not yesterday, the night before my head was healing, so I was scratching my head here. It's like on the right side of top of my head, I know people can't see me, but you guys can. By the morning, I'm not joking. it's from the back of my crown to the front, just above my temple, I got a blister. And I was just thinking, what the hell happened? What was I doing?! Then this morning when I looked at it, I was changing my dressings earlier and I thought 'Assya, you're such an idiot!' If you're going to hurt for the next 10 days now, well done you! at the moment, it's okay, but it's starting to hurt a bit more. So, I'm just like 'aaarrghh'!
Chris: What's the maximum amount of time that you, you could be completely pain-free?
Assya: I think that's going to happen when I'm dead.
Chris: So, there isn't really a day, you can't have a day when you don't feel any pain?
Assya: No, this is going to sound so weird to people, but in a way, I don't want to not feel any pain, because that's the day that I would be dead. Like literally, I feel like having pain is my normality. If there's no pain, I'm like unwell. Is something happening to my body that I don't know? Like I've had people say, why don't you get like skin graphs and all that stuff? Like at this age, and I'm thinking, why would I want to change it now at the age of 30 plus? I mean, I've gone through all these years of pain, what's going to change? It's not going to change much is it now? I don't know how much I've got left on this earth, but I'm happy with the way it is.
Claire: How do you cope with that constant pain? I mean, most of us can't even imagine what that would be like, and you're sort of almost, I mean, I, can't your exact words just now I'm happy with this, as it is sort of thing, to be able to even say those words is it's kind of incomprehensible to most of us, so help us understand how do you live with pain like that?
Assya: I think it's just how it is really, it's been there all the time, even background pain. So that's pain that I've got all the time, no matter what I do, it's there. And then you've got that extended pain or the second level, third level pain, where maybe a wound's flared or I've got like inflammation on a wound or an area that's hurting me more, because the blister or the wound is on a certain nerve ending in your body, which is one of the worst ones that you can get, because sometimes like, obviously like around your temple, you've got nerve endings in the back of your head, you got big nerve endings. And I always, always get blisters at the back of my head, back my neck, back of my ears and the top of my temple. Oh, the worst ones are the one on my leg where it's like, you know, the top of your shinbone, like just before the ankle? That there, it hurts like hell, but it's like, okay, it's bad now, but it will, it will get better. Well, the other worst one is, this is so embarrassing to say, but having a poo is the worst one. I'll feel like I'm about to give birth every time I go to the toilet.
Claire: Oh gosh.
Assya: I was literally thinking about it the other day, I feel like I'm at Lamaze Class, going [breathes out a few times].
Assya: Literally that every time and it's because you get blisters internally and it's always around the inside as well, unfortunately, sorry for the details, but, but I'll be real about it. And it is the most excruciating pain, worse than my head at times, literally, I always like have a pep talk on the toilet, going, 'Assya, come on, is this worse than this pain? Not really. Is it worse than that pain? No, not really.
Chris: I mean, I love, we love, how you can be real about it and be honest about it, because presumably over the years you've just learned and that's, that's the way, one of the ways I can deal with it. Whereas some people might be like, no, no, no, keep that private, but actually, you know, just being human about it must be a, a big help.
Assya: A lot of people don't discuss it because it's not something that a lady would discuss, first of all. And another thing is, you know, culturally or maybe anything else, whatever it is, to just think it's not right to discuss someone like that. But at the end of the day, I'm trying to raise awareness on EB, and I want to be as real as I can for anybody that is also suffering with EB and goes through the same thing, because they're might feel shy, discussing it with somebody. I've done the same thing. I wanted to talk to my friends about it, but then I'm thinking, are we really going to talk about poo right now? I'm like, no, let's skip it. But it's like, if you don't know what's helping you, how are they going to know? How do you know if you're not going to be able to help somebody else with what's going on? It might not be even related to having EB, it might be post-labour poo as well. I know I've heard stories where women can't go to the toilet after they've had like a C-section or even generally after a labour, or certain operations, you can get constipation quite badly. And it's hard for you to do that because your whole body has to work at it. So, I understand to a certain extent with certain people that it is very painful, but if I don't discuss it and explain what can help, what can't help, then I don't know whether it's going to help somebody or not, but it might do, and you never know.
Claire: Yeah, I think it's so important to just be open about things, and like you said, even if it's not specifically EB, if people are having a really hard time with something there's so much they get from just having someone else, hearing their struggles and what they're, they're struggling to go through.
Assya: They might even laugh about it as well.
Claire: Yeah. Amazing. If you can do that, I mean, how much hope might that bring someone else who is also coming to terms with EB or who's got a child that's got EB, you know, I mean, that must be an awful place to be. So, to hear you, I would imagine, I don't know, but I would imagine that would be a source of real hope that here's someone who's, you know, battling through and can still laugh. That must be what you want for your child.
Assya: Of course. It happened to me once, I went to a wedding and I was sitting with my family, just got to the wedding, and out of nowhere on the bride's side of the family. A whole group of people came running up to me, hugging me and everything else, and I was just thinking 'Who the? What the? What's happening here?' And then like the grandparents were explaining to my mum that they had a grandchild that unfortunately is passed away now, but they had a grandchild who was about one and a half, two, and she had exactly the same EB as me. And they were like, oh my God, you've got EB, the mum was literally so emotional and she made me cry. I was wearing heels, don't ask. And she was like, how are you wearing those heels? Then my mum goes, 'she drives' (this was about four, five years ago), so that was like 29 then. She was like, oh my God, you're 29, this is so amazing, it's giving me hope. I started crying, to see someone that's going through so much pain with their child and to be able to give them some smithering of hope, that's me done for the day, I'm happy with that. And it was really emotional because she had two older daughters who she wouldn't allow to play with her son because he might get hurt. And I was like, I felt for her. I was like, but you got to let him play because no child wants to sit there on their own, watching their siblings play together, and they're not allowed to play. And the way I've learnt is if I'm going to try and do something it's going to hurt no matter what I do. The pain's there, no matter what, if it hurts, it hurts, it's hurt for like maybe an hour, a week, that's it, it'll go, it'll heal and the skin will rebuild and get thicker that's the way I've learnt through life, is you just got to get at it and then, you know, it is what it is.
Claire: How have you become so mentally strong like that, is there a period in life where you weren't like that and you've built it up or has that always been your personality? How have you managed that?
Assya: Yeah, I never been this positive. Throughout my teenage years and adolescent life, I struggled a lot. I went through a period where it was always 'Why me? Why does God hate me? Why does it you always have to be me? Why can't I be like this? Why can't I have this? Why can't I have that? And I struggled with understanding that, you know, I still got to understand that, Why did I have EB you know? And it was hard, I went through a ten-year program with my psychologist, to understand, to love my own skin. And it clicked finally when I was that 26. I had a cancer scare at 25. I had a lump in my throat and it had some cancerous cells, so I had some medication and then went through treatment for a little while and then he worked better. But that shook me up a bit, and I was thinking right there. With other types of EB, especially recessive dystrophic you can get cancer. And I was always, always told that it would happen with EB, but not with my type luckily. Sounds bad, but you know, in a way. But when I had that little scare in my throat, I was like, oh my God, why have I been scared? Like, worried about getting cancer with EB when it happened so randomly, that was totally different to my EB kind of thing. And I'd have to think about, okay, I've been stressing over something that I can't stop from happening. EB's been there the whole of my life, it's not going to change and it's not going to go. It'll have its good days, bad days and ugly days, but it's there. I've just got to live with it. I can't let EB live my life, but I can live its life. And I had lost a friend with EB when I turned 30 and she used to life her life to the max. Samantha was a tornado chaser, and there's a, there's a program on her on BBC iPlayer somewhere. And she, she chased tornados. She always said to me, you know, 'Assya, what are you scared of? Live your life to the max, cos EB's not going to change. It'll get better and get worse, and that's it.'. And that motivated me to do a sky dive. Which was scary as hell, but I did it. As I mentioned before, I'm also Muslim and there is a Shabeesh chapter on one of the prophets, Ayyub. And he was tested with a condition where he would have wounds that were down to the bone and then maggots, they would eat his skin alive and he would sit there and he wouldn't even say ouch, because he was like, if that's their way of eating, then that's fine. And he had that, plus 70 years of his life, and he didn't complain and he got better at the end, because that was his reward. He healed from inside and out. And he was the most handsome of that time. And I thought to myself, if he could go, without a day of complaining, and for the effect that he thought, you know, is his way of feeding a creature that was created from God, and he was a pious man. He was a religious man and he was a blessed prophet. So, we, as mere humans, we're nothing compared to them. So, I thought, okay, I need to be able to be brave for myself. I need to be able to be patient for myself, because if I'm not patient for me, who else is going to be patient for me, no one's going to give me strength other than myself. So, I need to live for myself. So, I decided, okay, that's it. Stop being down. Enjoy the life that I have because this is it.
Chris: Because every day for you comes with a different challenge or, you know, how am I going to, how am I going to wake up?
Assya: Of course.
Chris: Do you think that's had an impact on your whole journey with grieving and how people, you know, because sometimes, somebody might take months to grieve something that they've lost, but because you don't really have the luxury of having, you know, a pain-free six months to grieve something you've got to get on each stage, do you think your experience of grieving is different because of that?
Assya: My grieving experience has been literally zero from the day I was born, because I've always been told that I could die at any minute. Like EB can take my life at any second, especially when it has a large flare up. Or even worse now, when I get more blistering inside, like in my oesophagus or anywhere on the organ. That then I'm like, well, this is it then. What am I supposed to do? And then the fear does kick in a little bit, but the way I see it is like, I can't be sad over the fact that, you know, I'm going to, I might die, but then I always think, 'Look, kid, stop.' Sounds bad, but it's like, I feel like I'm moping about it. So, my grieving period is like, literally what? 10 seconds? To 30 seconds only? Then I'm like, okay, that's it stop. If you want to get better, you need to think better, you need to be positive, so you need to fight this feeling that you have inside you to thinking 'This is it, oh my God, I can't do no more, and that's on a daily basis, I'm grieving to extent where my demons are telling me, don't, you can't do this, you're not gonna be able to get up today, you'll never be able to do this. And I'm like, ‘No, I can. And I will.' So, I'm grieving on a daily basis with the fact that it takes its toll, whether it's in the morning or at night, or even during the day I'm grieving, but I have to snap out of it as soon as possible, because if I grieved, I'll be grieving for the rest of my life. And that wouldn't be like tomorrow ending, it will be continuously, unfortunately.
Claire: As you sort of look back over, you know, all you've been through, what would you say your greatest loss has been?
Assya: I've learnt, that unfortunately, beauty is a big thing for people and with me not having hair and everything else, being different, I've always been treated differently because of the way I look. I feel like no one sees me for who I am, other than what they see, and that's it. I get stared at, laughed at, pointed at, and even talked trash about in front of my face, if not behind my back. And it's sad, that it's unfortunately, majority of the time, it's women. And that upsets me because throughout my school years, teenager, and maybe, I struggled to have female friends because I thought like they used to hang around with me because I was the ugly duckling, and the male friends hung around because I was the ugly duckling who had the most beautiful friends. And I've ironically had friends say this to me in college, to my face, laughingly, and he repeated it three times to the point where I was like, 'Okay, I get the point, I'm the ugly one, thanks for reminding me.' And I was in tears and everyone was like, 'What have you done?' But I'd go, at least he was honest to me compared to a lot of people who just use me for their friendship, to get with somebody else or to use me find somebody else. And it's just like, well, I'm human too. Do you know what I mean like, why do I have to be tested through certain things? And like my own father couldn't accept me for who I am, and that was a big thing for me. And I was like, well, there you go, the person that's a part of my DNA didn't want me, and I've always thought then, why would anybody else want me? I mean, that's the biggest thing that got to me a lot when I was younger, but I'm fine, I've fought it off now, I'm okay, I'm happy.
Chris: Having come through all of that, if you had contact from a parent of a child who was entering their teens or a little bit younger, starting at school and they had EB and the parents said to you ' I'm concerned that my child is not going to make friends or, you know, is going to have a difficult experience with friends.' How would you sort of try and comfort that parent or reassure them of what is important?
Assya: I've actually said this to my nephew, this morning, my oldest nephew today, he was saying 'I've got no friends at school' and I go: 'It's fine, not everyone will like to, not everyone needs to like you, as long as you like you, and you're happy with you being you, and you're happy with having your own self love and self-time, you can be on your own. That's the best thing. Because your self-love will attract to people that you need to have in your life. Being someone that goes out reaching for someone is just going to attract fake friendships, fake love, people that will just use you for you are, because you will have the biggest heart and the biggest personality and your heart and your personality will attract the right people. And parents, your child will need you to understand that you need to be their best friend first, and then anybody else, as long as that, if they've got siblings, they to be their friends first, then the outsides can be their friends. Because when you've got a sibling that sticks up for you, no matter what, and you've got a parent that would fight for you, no matter what, their friends will come and go, and the right friends will stay and there'll be happy for you.
Claire: Have you seen since you started posting on Instagram a lot of your kind of blisters and wounds and flare ups, have you seen a positive response from people? Starting to be more vulnerable like that.
Assya: I was very sceptical about social media, a few times I had deleted social media, including Instagram because I was bullied quite a lot. I had my face first make-over quite a few years. And I was told, I should go kill myself, I was told that why did my parents keep me alive? They should have aborted me. And stuff like that, and it really got to me and I wasn't in the right frame of mind in that time. So, I struggled a whole lot. And then afterwards I made sure I see a psychologist and my psychologist told me 'Assya, at the end of the day they are 00000000.1% of an opinion compared to the rest of the world, so that opinion shouldn't really matter to you.' So recently, when I started posting, I struggled, I do TikTok's as well, and I got a lot of love, but I also got a lot of discrimination unfortunately. I try to block out the discrimination, but if I read one and then I'm done on like, okay, that's fine, that's your opinion, I can't change it. It is what it is. Just get on with it. But I'm so happy that people are learning about EB right now, because even though it's not on the rise and no one knows what it is, it's nice to show that there is, we are a family that is out there around the world. I have this condition and it's nice to get followers that also have EB, and connect to them. And it's so nice to see that, you know, we, as a collective are able to support each other no matter what, and having love and prayers, unconditional love and prayers, from people that don't know you, but have some kind of empathy, and, you know, want to just show you love, like no other, it's just such a warmth to the heart. And I appreciate everyone that sends love and prayers because the days when it's really bad, that's what I just want to see and read. Sometimes it feels like I'm like begging for it, but I'm not, it's just, you know, it's nice to get like motivation and have some kind of inspiration to go, come on and you can do it. And to be told that your inspiration is just mind boggling to me, because I just feel like I'm just a human, that's going through something. Everyone goes through something. Every human in this world goes through a test. And this is just my path that I'm going through and it's just my own little yeah, thing.
Claire: Well, you popped up on my Instagram, which is how I found you. And I was looking for different losses and I saw your face and I just, I thought she was, you were so beautiful. And then when I opened up your feed, I could see what you were going through, I was just blown away that you had so much ability to be thankful for everything you go through.
Assya: I wasn't always like that, but thank you.
Claire: No, and I can believe that, and I love the honesty about that. And I think that's what makes you kind of really relatable as well, because you're not just, oh, this is great. I'm doing fine. You're honest about - this is what I'm dealing with. And I think you being grateful means more when you then see the photos of what it is that you're dealing with on a day-to-day basis. And I think that is a powerful thing and it breaks my heart that you have to go through any kind of discrimination or hate for that, because that's just the world, isn't it? And it's awful. There must be so many people that, that take joy from that. If there was people listening now and they were in the early stages of a child with EB, is there anything specific you want to say to them to give them a shot of hope that you know that there is, a glimmer of light. I mean, I know that you were hugged by Prince William! So, I mean, that's a pretty big step.
Assya: First of all, I think. For a parent, I'd want them to know that a child is still a child. He or she is still a healthy child to the extent of their healthiness. And you should still let the child be the child that they are blessed to be, just because they're having to wear extra dressings or have to be extra cautious around them. Let them live the life that they are blessed to have. Don't reduce it by, what's it called? Putting them in cotton wool and leaving them to one side, let them experience life, cause that's how they'll appreciate life.
Chris: Let them be a child.
Claire: One of the questions I like to ask, because of the name of the podcast is, did you ever ask why? But you've already kind of answered that because you said you did go through a whole patch of time of asking Why me? Why this, but that you've come out the other side of that. So, would that be a fair summary of your situation?
Assya: Yeah, I think, you know I've also questioned why am I so different than other EB people? Like I mentioned earlier, I've also got alopecia. And my fingers are slightly different compared to other people with Junctional EB. And I have certain different pigmentation changes to other EB people, not just Junctional EB people. So, I've always questioned, even two weeks ago I questioned it to one of the researchers going, Why am I saying different compared to other Junctional EB patients? And they go, we don't know because there are certain parts of my type that I've got, where it's totally different to what other Junctional types have had. So, I've also got a patch on my shoulder where it's black pigmentation. I've got a huge black patch on my right shoulder, and that came up when I was 16. And it was really scary, because they thought, Oh my God, what's this? Is this cancer that we've been looking at? What is it? And it got tested and they were like 'Oh no, it's just pigmentation.' it's just one of those things. And then, I didn't know until recently, about two years ago, I was doing the October EB Awareness Week, where I was researching just for my own process kind of thing, that I learned that I do have alopecia. And I was like 'Huh? I didn't know about this.' I'm like, this is cool. And I understand now why I've got no hair on my body as well. Whereas other people with EB have beautiful thick hair, some people have like nail beds still. I love like wearing fake nails, don't get me wrong. But in a way, I always say to my mum, you know, there is a reason why that God removed my nails, my hair, because I think I'd be the worst impatient person in the world because I'd end up scratching like there's not tomorrow and they'd be no skin on my body left, with me scratching away, especially when it it's healing! Oh my God. When a wound is healing, I use the worst things to scratch myself. Sometimes, I don't want to say it, because it sounds crazy. And then with regards to hair. I went through a phase where I want you to wear wigs all the time. And then when I went to college, a friend blurted out that he was a wig and it broke my heart, because no one realized it was a wig until this so-called, fake, friend said it was a wig. It was, oh my God, it's a wig, and I was like 'yeah', and it really broke my heart. And I was like, no one needs to know that until I open my mouth. And then now, like over the last few years, when I used to wear a wig, everyone's like 'you've got beautiful hair', and I'm like 'Yeah, it's a wig.' Before anybody is able to say it, I would say it myself. Or if someone would give me a compliment, I'm like, no, I'm not really that pretty, but thank you, because I can't take compliments. I feel like they just fake, even though that people say that I look beautiful, I'll be like, no, they're just saying it because they you're saying it. Well, the other one is like, when someone says you look nice, I'm like, yeah, that's a fake thing to say that you're kind of pretty, but you're actually ugly. I'm just like, in my head going 'Assya, forget it you're fine, you're beautiful. God made us all beautiful', but unfortunately it's just one of those ones where it takes a while for me to accept how I am, what I am. And me having no hair is the best thing, because I don't think I'd be able to wash my hair, straighten it. Do whatever. And that detangling what you guys go through... Thank God I'm bald!
Chris: We ask every guest on The Silent Why podcast, a particular question. And I'd don't know where you’ll start with this because there's been so much of it in the conversation we've had, but if we were to ask the question, what's your Herman?
Assya: My Herman is the fact that everything is temporary, even pain. Even your loss is temporary, because what you go to, yes, it is the most painful thing that you go through at that moment. And no time doesn't always heal everything, but as time goes on, you learn to process that, you know you've just got to get on with it. Things don't heal as much as you'd like, but God places people and blessings into your life that don't replace that loss, but help you in a sense to heal from that loss. You help you make new memories from that loss or whatever you've gone through. So, I say that, you know, it's temporary, don't over dwell into it because you will lose yourself, of who you are as a person into that loss. And I personally have seen that happen to me in my family, and it is the hardest thing to watch right now, but unfortunately not everyone can get the help that is available. And what you guys do with this podcast is amazing. And I think it will help a whole lot of people, a whole new generation to understand that grieving is one thing, but learning to go above and beyond it and to self-heal is a whole different thing as well.
Claire: We both feel truly blessed to have connected with Assya. It’s hard to hear her story and not have it change your perspective on life. Thank you Assya, for your bravery and the inspiration you are to so many people.
Chris: To find out more about her, check out the links in the show notes to videos of her being interviewed and skydiving. There’s also a link to her Instagram feed, where she posts her journey with EB and content warnings for some of the more graphic images of her condition – www.instagram.com/assyaebqueeen (with three e’s).
Claire: And if you’re new to our podcast and have no idea what a Herman is, want to read our blogs, find out more about us or even follow us on social media, you can find it all on our website: www.thesilentwhy.com.
Chris: And join us every Friday as Claire releases an audio version of her blog called My Why episodes.
Claire: I searched long and hard to find the right quote to end today’s show and there were so many I could have used on endurance, bravery, pain, hope and strength, but in the end I settled on a quote that is sadly just attributed to ‘Unknown’:
“You wake up every morning to fight the same demon, that left you so tired the night before, and that, my love, is bravery.”