Please find a full audio transcription of “Ella, Hannah and Shankar on dating” below.
Moderator questions in bold, respondents in regular text.
Unable to decipher = ( inaudible + timestamp ), Phonetic spelling ( ph + timestamp ), Missed word = ( mw + timestamp ), Talking over each other = ( talking over each other + timestamp )
Introduction:
Welcome to Changing Faces, Voices of Visible Difference, the podcast where we talk about having a scar, mark or condition that affects our appearance.
Hannah:
Hello, and welcome to the Voices of Visible Difference podcast, I’m your host, Hannah (mw 00.16) Stevens. I have a visible difference that’s caused by an autoimmune disease called scleroderma. And today I’m joined by Ella and Shankar and we’re going to be talking all about dating with a visible difference. So first off, Ella, would you like to just tell us a little bit about yourself?
Ella:
Yes, hi, I’m Ella, I’m 30 years old. My visible difference is a genetic condition called cranial frontal nasal dysplasia, or CFND for short. Bones fuse together early in the womb causing facial asymmetry which I’ve had various operations to correct.
Hannah: And Shankar?
Shankar:
Yes, sure. So hi everyone, my name’s Shankar, I’m 27 years old and I have a skin condition called vitiligo which affects the pigment on my skin, meaning there’s no melanin to actually colour my skin and I have this on all different parts of my body.
Hannah: Thanks, so anybody with a visible difference would know, dating can be a little bit of a mine field because we’re, kind of, dealing with outside judgements and also any internalised judgements of ourselves that we’re wrestling with. So who is currently single and who’s in a relationship in this room? I’m currently very happily single, how about you, Ella?
Ella:
Yes, I’m also happily single.
Hannah: And Shankar?
Shankar:
I’m happily in a relationship.
Hannah: Nice catch there.
Shankar:
I’ll get told off later otherwise.
Hannah: So Ella, have you ever struggled with any concerns around dating, is it something you, kind of, feel pressure to do from both culture and also just friends and family?
Ella:
Yes, a little bit. I think as I’ve got older I’ve, kind of, accepted it a little bit more and that I’m okay with myself at this moment in time. But particularly when I was at university, you know, it was a big thing being away from home, trying to get through life. And obviously relationships and dating comes into that, kind of, university life. And having a visible difference it, kind of, almost puts you on the back foot. So I had a few unpleasant experiences during that. I’ve been, like, I’m going to say the victim of a joke pull at university, you know with all the banter and the lads and, you know, trying to get with as many girls as they could. I’ve had an experience where I could see what was happening all along, I could see a few lads having a bit of a stare and a bit of a laugh and a point. I could see what was going on so in the end I just walked over to them and asked which one was going to buy me a drink seeing as they’d been smiling and pointing at me all evening.
Shankar:
I like that.
Ella:
So yes, that’s, kind of, my early experiences. I don’t know whether, Shankar, if you want to-,
Shankar:
And with that, can I just say, I commend you with that response because there are nasty people out there and I do feel at university, especially, when you’ve got, I say uneducated people, naïve, they seem to be very silly and have the wrong attitude towards people, let’s say. So very, very well dealt with, that. And I guess similar to some of your points, I guess growing up with it as a teenager, having vitiligo, my confidence was very much knocked so I didn’t really know how I would cope with meeting people at the time. It wasn’t even something I had in my head that I’d do and it wasn’t until I as about twenty years old, which was I’d say five years after getting vitiligo, did I start to go on my first date, if you like. But even then, very, very conscious, very scared, and it’s something that stayed with me a good few years until I became comfortable in my skin.
Hannah:
Yes, I feel like it’s an ongoing process, living with a visible difference and navigating the dating world and it sounds like both of you have, kind of, managed it fairly well. I mean, Ella in particular, I, again, like Shankar, commend you for dealing with that in such a, “Do you know what? Screw you.” Because I think it’s the best way to sometimes deal with people like that is to be confrontational so, “I’m going to challenge you on this, I’m not going to sit back and just accept the fact that I can see you talking about me.” Can I ask, with that experience has that, or any other experiences you’ve had, stopped you from dating or knocked your confidence in the dating world?
Ella:
Yes, it has a little bit. Again it’s one of them because, you know, having a visible difference, we build up these protective walls to keep ourselves safe and contained and comfortable with how we’re doing, that you almost forget you could have another person involved in that to help with those protective barriers, I guess. So for me, trying to date after that, yes I was kind of, like, almost accepted that I could be lonely for a long, long time, sort of thing. Hopefully I’m not. Yes, it’s almost like, “Do I really want to be going through this process every-,” because it’s exhausting as well. Being that confrontational every time would be exhausting but then also, on the flip side of that, not wanting to date and being lonely and that kind of thing, that’s also exhausting. Because I certainly feel like I do miss out on a lot of things, like when I go and meet my friends who all have partners and now are also having families and things like that. So, you know, you have that hope that will happen one day, but just when that one day will be, who knows?
Hannah:
Yes, it can be an exhausting process. Because personally, I think, I’ve often found it quite isolating because I didn’t have a lot of friends, or any friends growing up who had visible differences like me, and it felt like I was going through that process alone because there was no one who could fully sympathise with that I was experiencing. And I think it fed a lot of fear around being vulnerable in that way with someone else. And Shankar, how about you? When you were growing up and dating, did you have any peers who were going through similar things or were you facing that on your own?
Shankar:
I really just feel like because people don’t understand, they just will never understand my situation. So I find it very hard to get advice and even when advice was presented in front of me, it wasn’t coming from someone who understood my situation. It just shows how important it is to have the right people around you or the right support network around you, and I think the first step to any sort of relationship or dating world, is acceptance of who you are first. When it comes to dating, that’s the first hurdle. And when you can cross that, then you can really start to progress.
Hannah:
Absolutely, it think you’re so right there, until you have that self love for yourself, it’s so hard to expect someone else to treat you with respect if you’re not doing that for yourself.
Shankar:
Absolutely.
Hannah:
How about you, Ella? Where are you in that, sort of, journey of, are you confident in embracing yourself or are you still struggling with that aspect?
Ella:
I’m confident with embracing myself now. I think what has really helped me was doing a retreat in America, virtually of course at this moment in time. Where I got to meet lots of other people with craniofacial conditions like myself. You saw a lot of them, particularly the older people, when I say older I mean like 21 plus. You know, it gave me a little bit of hope because they had families, they had children that didn’t have visible differences also. And they also had very supportive partners. So it was really good for me to see that because I was like, “Oh okay, yes, it’s just a point of having to wait and that right person will come along.” But I think also what doesn’t help is the media and some of the TV programmes that are on like The Undateables and then you have Love Island and things like that at the moment. So that always puts a bit of, almost extra spotlight on people who are slightly different. Particularly like The Undateables show. I mean I know it has had its positive stories as well but the whole idea of being un-dateable kind of makes you seem like you’re unloved because you look slightly different. Which again then throws into that insecurity of your own self.
Hannah:
Absolutely, I feel like they undermined any potential positive impact of that show by choosing that title.
Shankar:
Questionable title, for sure.
Ella:
Yes, very.
Hannah: Interesting choice. For me, I’ve kind of had lots of positive and negative reactions of people when dating. And, you know, I’ve had people who’ve been very supportive but I’ve also had people who were incredibly mean, I’ve had someone actually during sex bring up my scars, which was horrifying and really crippled my confidence with dating.
Ella:
Wow.
Hannah: Are there any, kind of, positive or negative experiences that really stand out for you personally, Shankar?
Shankar:
I look back at my ex now and when I look back at that past relationship, when I first had it, it was something that she accepted from the word go. At that stage, I wore make up and it was something that, let’s put it this way, I didn’t want to wear make up but it was the one thing that gave me courage to get out the door at that moment in time in my life. If I look before that when it came to just dating in general, the only thing that always stuck out in my head, and it’s only because I got vitiligo as well around my left eye. Was I was never sure if someone was looking at me or just my vitiligo. And you know when you see someone swell their eyes just slightly down and back up and just slightly back down and back up again. When it came to, like, dating, it really freaked me out. And I can always remember my heart beating double as fast and thinking, “Oh my God, oh my God, oh my God, they’ve spotted it, Oh no, damn I haven’t put my make up on properly.” Or, “Oh my God, there’s a white patch.” And it’s crazy to think how scared I was but then how much it knocks your confidence ( timestamp 00:10:00 ) as well. And similar to Elle and going on that retreat, I had a wobble last year when I broke up with my ex, and all of a sudden, you know, I’m single.
When I broke up with my ex, and all of a sudden, you know, I’m single. And with my ex, it was the first stepping stone into being, you know, feeling, “Oh my God,” like, “Someone’s accepted me for who I am, oh my God, I’m in a relationship now, this is my first real relationship, and they love me for who I am. So, you know, I can actually take my make-up off.” Which I did, and then the stabilisers came off when I came out of that relationship, and it was a big moment thinking, “Oh my God, hang on a second, I’ve got to go back out into the world again.” You know, without that support again, and it was, the journey that I’d been on, from that moment, you know, speaking to people, getting help in that way, to really get back to where I was, it made me realise that it was myself who really pushed through those leaps and boundaries to accept myself and my skin condition, and it helped me actually get myself back out there to go dating again.
Hannah:
Yes. I think that sometimes, because, I, actually, very similarly went through the same thing last year when I had a relationship that was, we were dating for nearly five years, come to an end, and, kind of, the idea of dating again was terrifying because it was like, “Oh, wait a minute, I’ve been with this person for a long time and they know everything about my scars, and my conditions, and, you know, I had a long time to build up that explanation, and their understanding and their support.” So to, like, face the dating world again was kind of terrifying, and I had to, kind of, like you did, re-visit that journey of self-love, and say, “Well, I need to be completely comfortable with who I am, and how I feel about myself, before I share that with anyone else.” The point you said about the looks was something that I really struggle with as well, because the look that someone gives you when they’re checking you out is almost identical to the subtle look someone gives you when they’re staring at you.
Shankar:
Yes, absolutely.
Ella:
Yes, I do that as well.
Hannah:
Yes, have you experienced that, Ella, where you’re like, “Is this person checking me out, or are they wondering what condition I have?”
Ella:
For me personally, when I meet someone, I kind of go to them already, “Yes, I look like this because blah, blah, blah.” Just to break that wall down, and I don’t know whether that sometimes puts somebody off because you’ve been quite open, but it’s like, for me, I’d rather get it out the way, use it as the ice-breaker, to be able to then go, “Right, this is it. I’ve put all my eggs in one basket, literally, you can either take it or leave it.”
Hannah:
Yes.
Shankar:
100%.
Hannah:
It’s also a safety thing, I think, because you’re protecting yourself from potential reactions if they’re not aware before they meet you, or before, like, you have a conversation about it. Because for me, so, for me, my scarring is all from, like, chest, all the way down to, kind of, my pelvic area, and on my back as well. So, if I’m not wearing something that’s, like, revealing, it’s possible for me to hide it, but I’m very specific in terms of, like, if I’m going on a date with someone, I want them to see my scars from the very beginning, because I don’t want to get into that moment again, like I had, where someone brought it up when they saw it for the first time, in the middle of a very intimate and vulnerable moment. Do you guys, kind of, do a similar thing, where you try and protect yourself from potential responses, by being very upfront about it?
Shankar:
You’ve literally just triggered, like, a vast amount memories, actually, and I remember, back when I first started dating, and it was something that was a reoccurring theme, where I would meet, obviously, someone, and very quickly I’d be like, “Right, this is quite a big thing I need to tell you.” You know, like, “Sit down.” Or whatever, like, I’d make it a big moment on purpose, and I’d say, “Look, I need you to know that I’ve got vitiligo, it’s not just around my eye.” And then I’d take my top off, and say, “Look, it’s here on my chest. It’s here on my back.” And then I’d show my legs as well, and literally, to your point, I present myself as who I am from the start, because it’s as if I automatically would think, “You know what, I’m going to get rejected here.” Or, “You know what, I’m not good enough for this person because of who I am, so let’s just get this out the way now and not have any surprises down the line.” I don’t want to set myself up to be disappointed. It’s scary how, you know, we put ourselves in those situations, because, if you really think about it, we’re putting ourselves, already, at a very low state, and it’s so unfair. By me doing that from the first date, that followed me through onto, you know, meeting people, and when you talk about, you know, for example, having sex, at, especially, university, I remember myself doing the exact same thing. Showing people who I was before anything even happened. To that level of degree, by taking my top off, as well, before anything, you know, would ever continue.
Hannah:
Yes, and I would do a very similar thing, and it’s exhausting, because it’s, you know, on one level, we’re doing it to protect ourselves, but at the same time, we should not have to do that. How about you, Ella? Because, obviously, we all have very different visible differences, as well, so I think it’s important to, kind of, take stock of that, those different experiences, because, you know, for me, I can hide my visible difference, whereas, for you two, your differences are more visible. So, Ella, how would you say your experiences, kind of, differ from ours, or if they’re similar?
Ella:
I’d say mine is a little bit different, because I can’t really hide my scar, with it being from ear-to-ear, and with the way I have my hair cut, it’s obvious, and, also, I can’t put anything on, you know, like make-up or anything like that, because whatever make-up I would put on, it wouldn’t stop my face from looking any different, because it wouldn’t cover anything up, because of the way the asymmetry works on my face. And people always comment on that, actually, like, when we go out and things like that, you know, “Why don’t you put make-up on?” And I’m like, “Because putting make-up on won’t make any difference whatsoever. Also, I don’t feel comfortable in make-up, for a start, but that’s a different story for a different day.”
Hannah:
That’s the most important part, yes. Your personal comfort comes first.
Ella:
Yes, so, really, like I said, I haven’t really had too many dating experiences since uni, really, so, but I’m okay with that right now. I’m quite happy. Don’t really want anyone more than two meters close to me at this present time anyway, so.
Hannah:
Very smart.
Ella:
You know, we’ll go with the flow at the moment.
Hannah:
Yes. I guess, something we haven’t really covered yet, is just how this feels. Because I think, you know, we all talk very clinically about these experiences in terms of, you know, what we’ve been through, but I feel like it’s important to really flag, like, how it feels when you’re dealing with something like this, in a dating world that is largely ableist and has very specific, like, aesthetic likes and dislikes. Because, for me, it’s often felt quite isolating and can be really quite distressing sometimes, feeling like I have to put all of my experiences on a plate so that people won’t judge me. It can feel like dating is always vulnerable. I don’t feel safe, a lot of the time, in dating. I don’t know how you guys have felt during these experiences.
Shankar:
I met my girlfriend on a dating app, Tinder, I think, you know, you may have heard of it.
Ella:
Yes, swipe right.
Shankar:
Yes, that’s it’s exactly, and I remember, like, putting on my bio, for example, like, I don’t know, “#vitiligo” is one of the first things I put on there. And then I made sure I put a picture of myself with my vitiligo as well, so it’s there, like, people, you know, who swipe right could see it. And, you know, living in this age where social media is keen, living in the age of Love Island and other bias TV shows, which, I’d say, give the wrong image of the perfect being, it’s difficult, right, because everyone just automatically compares themselves to those around them. And arguably, even when I did that or put in vitiligo in my bio, I was doing the same thing. I was comparing myself to someone else, which is wrong. But yet we’re human and unfortunately, the instinct was there to do it. I see, you know, in terms of, like, the body positivity movement and the differences that people have, I see a lot more celebration of it, I see a lot more of it being embraced. I myself have been educated monumentally over the past five years I’d say. I used to look at myself and be disgusted, so I’d look at other people and think, “No, that vitiligo doesn’t look good, it looks very scary, oh my God, oh my God.” And that’s actually quite a nasty thing to say, but that was my perception. And you take that on to dating, “No way is anyone going to date me, no way, like, oh my God, would I date someone with vitiligo, no way?” Like, and that was my uneducated mind at that time. Whereas now, for example, if my girlfriend had, you know, vitiligo, or any visible difference, if I’m honest with you, I’d completely accept them, completely love them for who they are, and know it’s not about that. But, you know, social media and the positive and negatives that have come out of it, it really does affect the dating world.
Hannah:
It really does, and I think you made such important points there, like, we don’t realise how much of society’s expectations that we internalise. And that really affects not only the way we see ourselves but the way we see other people, because I think I went through a very similar process to you where I hated myself, I hated the scars, I hated how I looked and I hated, like, feeling judged by other people. Then that really started to infect how I saw other people, and that really just destroyed my confidence in any dating, or just in general and I think it’s so important that we flag these things and say, you know, like, “Having these beauty standards is damaging for all types of people.”
Shankar:
Yes.
Hannah:
Yes, and Ella, how about you, how have you felt, like, kind of, wrestling with this in dating and your confidence?
Ella:
As you both probably know me very, very well, I’m very much a very confident person, very much happy in my own skin, but when it comes to things like dating, I’m like mozzarella, I’ve just melted because, like, you know, because you have that vulnerability, again. And with those, like, negative experiences, I too have tried dating apps ( timestamp 00:20:00 ) and the moment you feel like somebody actually likes you and swipes right I think it is, you do get that little bit of a flutter, and then it’s like is it genuine or are they just wanting me to send obviously some very obscene pictures? So, for me, I’ve bailed on them quite a few times, I’ve literally I’ve set the account up and then literally took it down within, like, an hour. Again, it’s that exhausted feeling of having to explain yourself, you know, being incredibly vulnerable on social media. I mean, I grew up in an age where you didn’t have social media, you kind of had to go up to people and start talking to people to either date or even if you did want to be really horrible to someone, you had to have that courage to go up and say it to people’s faces. Whereas now on social media I don’t want to be, you know, spread all over social media in a negative light. And if I had to put my life in, like, a pie chart, it would be the one area that’s very, very, very small and because it’s not something that I’m 100% comfortable with at this moment or confident with. Like, I mean, I wouldn’t even know where to start really, I’d fumble or when I am in a situation where I’m with friends and I’m talking to people when you’re out clubbing or whatever, you know, and you start talking to people, I constantly feel like there’s a spotlight on me and it’s everybody’s looking at me because it’s like, ‘Oh, well, that person shouldn’t be with that person.’
Or there’s that misconception as well where people who have a visible difference should always be with somebody else who’s got a visible difference I think as well. I think it’s the same with a lot of disabled people as well.
Hannah:
It is.
Ella:
You know, you should be with somebody who looks like you or has some sort of-, well, actually, no, everybody deserves to be with somebody who likes them for the way they are, whether they have a visible difference or not. So, yes, for me it’s just an intense vulnerable, and kind of scary feeling about letting anybody get close really.
Hannah:
Yes, and do you think with the way that social, you know, dating has gone, it’s very much online and through social media, do you think that’s made things harder for you?
Ella:
Yes, I think it’s to know whether anything’s, sort of, genuine. And also, you don’t know whether that person’s that person that’s posted behind that profile picture either, do you know what I mean?
Hannah:
Yes.
Ella: So, there’s a sense of security there as well. But for me, I’d quite like to do it the old-fashioned way, you know, like, meet somebody in a club or a bar and then go from there kind of thing, rather than the internet. I’m always hoping that my mates might be able to set me up, but it’s not worked yet.
Shankar:
I’ll be your wingman.
Ella:
Yes, I need a wingman, that’s it.
Hannah:
I’ll be your wing woman.
Ella:
Yes, there we go.
Hannah:
Changing Faces night out.
Shankar:
Love that. Let’s organise a night out.
Ella:
Yes.
Hannah:
Yes, we’ll go dating. So, lastly, just to wrap things up, is there any advice that either of you would give to people who are struggling with how to approach dating and relationships? Shankar, shall we start with you?
Shankar:
Yes, I mean, for me, like, it comes down to the first step on the whole dating and relationship ladder, which is, you know, the acceptance of yourself. So, I mean, you don’t need to look to others for acceptance of who you are, and the difference we have when it comes to dating or relationships, that validations lies within. And when you can accept your beauty, those that are meant for you will love you for you.
Hannah:
Absolutely. And Ella?
Ella:
Yes, I’m kind of on the same level as Shankar there, I think I’ve grown a lot in confidence through doing a lot of things with Changing Faces a little bit more, you’ve got to have that self-worth of yourself beforehand, and then, yes, if the right person is there in your life, they’ll accept you for who you are.
Hannah:
That’s a good shout. So, thanks so much everyone for joining us, it’s been lovely to chat all about dating with a visible difference, and I really hope that anyone listening has found this helpful and they can go out into the dating world with some newfound confidence. And if they need a little extra help, there are lots of resources on Changing Faces’ website all about dating with a visible difference. Bye, everyone.
Conclusion:
You have been listening to the Voices of Visible difference podcast from the charity Changing Faces. If you would like to get in touch, share your thoughts, or find out more, you can contact us via the Changing Faces website, or follow us on Facebook, Instagram, or Twitter.