1.1. “Keeping up with the image, keeping up with the norms”: pressure to adhere to appearance ideals on social media.

The participants felt significant pressure to adhere to beauty standards on social media; however, they felt that many elements of these standards (e.g., clear skin, symmetrical face) were incompatible with visible differences. This was particularly the case for image-based platforms such as Instagram:

“Instagram…it creates this very high threshold in terms of appearance, in terms of perfection, in terms of what’s seen as attractive… if you have any visible difference, anything that makes you kind of ‘stand out’ will make it difficult to be that ideal” (Phoebe, 38 years, dermatillomania).

Many of the unattainable beauty ideals that are pervasive in traditional media (i.e., television, film, magazines) have infiltrated social media, too. The participants felt that this created pressure for members of the public to attain these unrealistic standards and construct a ‘perfect’ online self:

“Movie stars, anyone that’s wealthy is also a very good looking person…and you see it on social media. All influencers are all beautiful models, obviously. I mean, it’s that whole thing, right, where being beautiful is like the goal. It’s social media, [it] teaches you that you should be perfect. You should look perfect. You should have a perfect body. You should have a perfect face. You should have perfect hair. And it allows people to judge people based on those things - you judge people based on their looks because you’re not actually seeing them in person or talking to them in person. And that’s then that leads to the comments where you can say whatever you want because you’re not actually standing in front of that person”. (Kathy, 30 years, scarring).

Here, Kathy suggests social media’s emphasis on perfection, along with the anonymity of interacting from behind a screen, actively encourages people to make appearance-based judgements and comments which would not necessarily occur in everyday life. Although the participants reflected that all social media users experience pressure to portray the ‘best’ version of themselves online, the culture “sets an impossible task” (Lola, 36 years, scleroderma) for people with visible differences because their appearance deviates from accepted societal norms. Therefore, constructing their online ‘self’ required significant time and effort and often involved attempts to hide or conceal aspects of their appearance that were not deemed socially acceptable:

“I’m sure that all people feel that pressure, but people who live with a visible difference will have more of a challenge to strive for that because it means even more adjustments, even more hiding”. (Phoebe, 38 years, dermatillomania).

Moreover, Catherine reflected that by re-shaping her online self so much, she had undermined her sense of identity in the real world. In the excerpt below, her use of the word ‘shell’ gives the impression that using social media can be a hollowing experience which erodes an individual’s identity:

“I think that you can try and be something you’re not, and so therefore that sort of gets reflected in your everyday life. I think you can become so obsessed with your image on social media that in real life, it just a shell of your true self.” (Catherine, 22 years, eczema).

It is even more difficult for adults with visible differences to fit online because social media is often used to perpetuate negative stereotypes, which increases stigma and discrimination towards people with visible differences:

“Social media can maintain stigma in the jokes and throw away comments, often a meme to do with how ugly an individual is…I can think of numerous examples. One is a video of a man walking towards a veiled bride sitting on his bed, he unveils her to find someone made up to look ‘monstrous’. The reel is a joke about what your tinder date looks like when you meet them in real life, but [it] can play on the insecurities that people with visible differences have to live with when it comes to how to present to people online versus real life” (Daniella, 44 years, lichen planus pigmentosus).

Here, the veil is a metaphor for the true self that is hidden on social media. Similarly, some participants explained that there are features within social media accounts such as Instagram, TikTok, and Snapchat that emulate facial differences for entertainment purposes:

“There’s a lot of like body checking almost. So, using filters to see like is my face symmetrical? I’ve seen a lot which must be terrible for people who have other facial differences…like putting on a filter that’s like a funny, exaggerated proportion and then get off to see if you’re like pretty or not.” (Christine, 22 years, cleft lip and/or palate).

The appearance pervasive landscape of social media including features that encourage users to enhance their images to reflect stereotypical appearance norms, placed external pressures on the participants and made them feel that, as individuals with visible differences, social media was not always a place that they could fit in and be an active part of.

1.2. “I’m looking at this now and I’m finding flaws”: Internalised appearance ideals affect confidence on social media.

The second subtheme relates to how the external pressure to adhere to beauty standards on social media led many participants to internalise appearance ideals. Consequently, they felt self-conscious about posting on social media when they felt unable to meet these standards and to over-scrutinise their appearance in posts. In Ali’s quote below, it is clear she has internalised online beauty standards from the way she believes that showing her burn injury online may lead to her losing followers:

“I don’t want them to be like ‘ohh, she’s showing herself’ and I think I might lose some followers…some people might find it disgusting…because of the burns on my body and face”. (Ali, 46 years, burn scarring).

Some participants also reported being hyper critical and judgemental of photographs of themselves, scrutinising any perceived imperfections or features they felt misaligned with online beauty standards. For example, when discussing a photograph of themselves, Taylor explained how even if they initially feel happy with a photograph, their insecurities will lead them to overanalyse it and find aspects they are dissatisfied with:

“I like the initial photo, I’ll try and not think about it too much. Whereas, if I tend to look at it too much - like I’m looking at this now and I’m finding flaws - if I tend to do that too much, then I just end up…I end up looking at it too long and then I find problems with it” (Taylor, 22 years, CMN).

Similarly, due to internalised pressures to have perfect symmetry, Kathy had become very self-critical because of the impact her condition had on her face. This made her feel ‘vulnerable’ and wary of using social media:

“It’s like less selfies as I’m ageing, my asymmetry is getting worse, which I was kind of told would happen. So, I think I’m like a little bit more vulnerable now and I’m a little bit more judgmental of myself now”. (Kathy, 30 years, scarring).

These concerns made many of the participants feel unable to portray authentic representations of themselves on social media, particularly because of fears they would be judged by others and receive negative feedback on their posts. Although a number of participants set their accounts to private, there were still concerns about data on social media being shared publicly and losing control of their own images:

“Instagram is like you’re sending it out into the world, and it could be seen by everyone and a bunch of strangers...I don’t have the bravery or courage that other people do. But I would love to be able to post more photos of myself that aren’t edited or photos of myself that that share my differences like openly and willingly.” (Kathy, female, scarring).

Moreover, Christine felt that she would not receive positive reactions if she posted photographs of herself on social media. However, rather than receiving negative attention and comments, she worried that she would receive no reactions at all because content reflecting ideals gets engagement online:

“I guess selfies, for example, are things that people post when they feel like they look good, and they look pretty and they’re looking for the interaction of like the people who follow them to comment and tell them they look great and like give them that feedback. I know that I’m not going to get that feedback…that’s never something that’s happened to me and so, then it’s just posting a picture of myself to silence. And that’s really weird and odd and makes me feel bad. So that’s why I don’t do that.” (Christine, female, cleft lip and/or palate).

However, some acknowledged that much of the criticism of their posts came from within:

“A lot of the times…we have this preconception in our mind that people are judging our social media post in a way that they’re probably not. They’re probably just seeing it and then just scrolling on, moving on” (Rahul, 33 years, NF1).

“I know people are less likely to sort of complain openly to my face, but I think I’m more self-critical of the photo of myself” (Taylor, 22 years, CMN).

These quotes suggest that it is perhaps the internalisation of these ideals, and fear of negative appearance evaluation, that prevents the participants from posting on social media. In conjunction with this, some reflected that many of their concerns may not be down to their visible difference, and are in fact the same pressures everyone faces when using social media:

“There’s a lot of insecurities with even people that don’t suffer or don’t have the conditions that like I have that say, for instance, even people and I know this for a fact like people say “ohh I don’t like to show my ears because they’re too big” or “I have pimples”, “I have this, I have that” and they’re very self-aware” (Lola, 36 years, female scleroderma).

In summary, the appearance ideals that saturate social media had impacted how the participants viewed themselves and made them feel self-conscious about posting and hyper-critical of any posts of themselves.

1.3. An online disguise: conscious and subconscious strategies to fit in on social media.

The third subtheme relates to the lengths the participants went to conceal their visible difference to fit in with the appearance standards on social media, both consciously and unconsciously. The participants used several practical and digital techniques to disguise their difference online. For example, some participants were able to cover their difference through their choice of clothing:

“They [thighs] are always covered, they’re in trousers or occasionally I might wear something that goes up to the knees, but I never wear anything like that shows the upper part of my legs” (Ada, 50 years, lipoedema).

Interestingly, this was not always a conscious process for the participants. For instance, when looking for photographs to discuss with the interviewer, Taylor was surprised realise how often their birthmarks were covered:

“It’s amazing going through screenshots of trying to find photos for this interview and realising how many I had my sleeves on” (Taylor, 22 years, CMN).

In addition to using clothes to cover their conditions, some constructed their poses in ways that concealed their difference. This had been the case for Rahul, who had a condition that affected one side of his face:

“This particular picture is taken from the right side. Showing the right side of my face, not the left because the left side of the face is where the tumours are growing, whereas the right side there’s no tumours and a lot of my pictures on social media typically work from the right-hand side just because I never wanted to show the world the left side (Rahul, 33 years, NF1).

Interestingly, while only ever showing one side of your face is not something that can easily be achieved in the real world, the online space provided an opportunity to portray himself in a way that masked this part of his identity. As well as using physical means to conceal their condition, the participants made use of digital tools to align more with specific beauty standards (e.g., clear skin, larger eyes), including digital photo-editing tools and so-called ‘beauty filters’ that are built into many social media sites. For instance, apps where you can “remove all the acne, all the spots, or the scabs, all the scars, you can change the tone of the skin, you can add eyelashes” (Phoebe, 38 years, dermatillomania). These practices were commonplace for several of the participants:

“I hate how I look in front of a camera…I always post edited [photos] (Kathy, 30 years, scarring)”.

“It’s got a very strong filter on it, which is basically air brushed my face. Probably made my eyes look a lot bluer than they are and, yeah, it’s very heavily filtered” (Catherine, 22 years, eczema).

The way Catherine describes these tools as being ‘strong’ and ‘heavily’ filtering her appearance conveys the extent to which individuals change their appearance to feel comfortable and acceptable on social media. Although participants reflected that the time and effort was often not worth the ‘reward’ of gaining positive attention through likes and comments, the external pressure made them feel compelled to continue:

“In terms of Instagram [there is] a lot of pressure kind of making you feel bad on [the] inside, that I will never be this unless I use some filters then maybe and hide some of the features and a lot of effort going into ‘how do I pose for a picture to even start with?’. So, it’s a lot of pressure. It really is for this little reward, but it clearly is something if we are doing it for positive feedback from others.” (Phoebe, 38 years, dermatillomania).

Participants also felt more comfortable in photographs with others or when the content they posted portrayed them in a humorous or non-serious way:

“In photos, I usually pull faces to sort of like, not hide the difference, but to like make it ironic so that if I take a photo and I notice the difference, but I’m pulling a face, to me it makes it more like ironic and I can justify it… I’ve never actually psychoanalysed this before, but like when I pull that face it kind of makes the difference look more ironic as opposed to an actual problem with me.” (Lily, 23 years, craniosynostosis).

Here, Lily reflects that by pulling a face she is accentuating her difference in a purposeful way, so that it becomes “very apparent that I’m making the difference”, which gives her control over how she is portrayed and perceived by viewers. This suggests to those viewing the photograph on social media that she is deliberately opposing beauty norms, and the intention is for the photograph to be non-serious and ‘ironic’. This may be a protective mechanism which deters others form judging her based on beauty standards.

In summary, this subtheme relates to the extent to which participants would attempt to disguise their difference to fit in with the culture on social media; however, this involved covering or hiding a part of their identity.

2.1. “Slowly, over time I’ve just got more brave”: building self-confidence through social media.

The participants’ relationship with social media was complex: while it could be a place that made them feel self-conscious and insecure about their appearance, it could also provide a unique platform for them to gradually become more comfortable with exposing their visible difference. Specifically, it was a space for them to slowly increase their confidence and self-expression. When discussing how she started sharing photographs and personal stories about her eczema on social media, Catherine explains:

“I think that it was a slow process because it was a process of your confidence growing and just a bit of self-love. But it was definitely the start of my posts changing and then being a bit more authentic…I think you’re completely trying to break a cycle that you’ve been in for a really long time” (Catherine, 22 years, eczema).

For Catherine, social media provided an environment to sew the seed of confidence and watch it grow over time. This slow, nurturing process was also experienced by Amelia, who gradually built up to posting more about her psoriasis after being inspired by others who had allowed themselves to be vulnerable by showing their conditions online:

“I think when I was like really shy at the start about posting like, ‘ohh, I think I didn’t want to post too much’ and I was a bit careful about like the sort of pictures I put up, because like say if there was like a picture where like my psoriasis looked quite severe and I didn’t want people to think that’s a bit gross if I post that. I think it was just seeing other people post like vulnerable things. I was like ‘ohh, they’ve done it, so I can do it’ and then I think over time I’ve just got more um, yeah, more confident with it.” (Amelia, 26 years, psoriasis).

Importantly, the participants reflected that becoming more confident on social media had enabled them to be more accepting of their condition, and comfortable showing it, in their day-to-day lives. For example, Rahul discusses becoming more confident posting pictures on social media that show him when he is not wearing his prosthetic eye:

“To start off with I was very shy on social media and I always used to put photos of me from my right-hand side. So, my ‘better side’ - you know to quote - and I’d always just do that, and I’d never put a front on picture because I’d feel that it’s too ugly to put a front on picture or that people will judge me or people will comment…but as time’s gone on and I’ve learnt to accept myself and this is a story I share with people on social media, now is that before you can expect others to accept you and like you and think…you’ve got to accept and love yourself and that’s the mindset and the transition I went through and now, yesterday I posted a video on TikTok without my eye.” (Rahul, 33 years, NF1).

Rahul reflects that to feel accepted by others it is necessary to accept yourself. This links to the way that having the confidence to portray yourself in a positive and authentic way online can have an impact on how others see and view you. The interactive function of social media, which enables users to give feedback through likes, reactions, or comments, was perceived in both a positive and negative light. Although participants were fearful that they would receive negative attention, they also reflected that positive feedback could be reassuring and encourage them to continue expressing themselves authentically online, helping their confidence grow:

“Loads of people comment like love hearts and stuff like that. And like loads of people just be like really nice and, yeah, they’ll be really nice, and they’ll comment really nice stuff, which yeah, is good…It helps me quite a lot and it helps me like it gets me to a point where it’s mentally like I’m mentally doing OK” (Jessica, 21 years, ectodermal dysplasia).

In addition to this, Amelia explained that receiving support and positive reinforcement from gaining followers and the engagement she was getting on her posts helped to facilitate this process:

“I think it’s just I’ve slowly overtime I’ve just got more brave with it and I think when I got like I noticed I was getting like quite a few like more followers and stuff and I was getting like a sort of like not opportunities but like sort of people were reaching out like companies were asking to send like products and stuff like that. And I was a bit like ohh, this is actually, I’m actually doing a good thing I could yeah, I could be a bit more brave about it” (Amelia, 26 years, psoriasis).

Although it was not always easy to portray their authentic selves on social media, the participants felt that it was worthwhile and would have significant benefits for their wellbeing and to help others with visible differences:

“For individual people like myself, who actually puts yourself out there because the more you hide, the more you would be a recluse. You’ve got to push it hard, you know, yeah everyone has crap days. But some have worse days than others. And yeah, you you’ve got to push and get your face out there (Tom, 42 years, burn injury)”.

The way Tom describes ‘pushing’ illustrates how being present on social media can be a struggle but that it is worth the fight.

In summary, many of the participants had started to overcome the challenges of feeling self-conscious on social media and found that, in turn, this made them feel more confident about their visible difference when they were offline, in their daily lives.

2.2. “That’s not the real me, this is the money shot me”: Authenticity versus short-term validation through social media.

Even when the participants did feel more comfortable posting their visible differences on social media, they were not immune to social media-related pressures. Specifically, many felt torn between wanting to portray themselves and their visible difference authentically and posting in a way that would lead to external validation. For example, Daniella describes how she is always cognisant of engagement from other people on her social media accounts:

“I feel like it [social media] engages a more superficial part of me that’s worried about how people perceive me, and who likes my posts” (Daniella, 44 years, Lichen planus pigmentosus).

Furthermore, the portrait of perfection is not limited to appearance on social media, and the participants felt pressure to portray many of aspects of their lives in a positive, often unrealistic, way:

“What most people do, they try to look - you try to look really happy. You try to look like you don’t have any major troubles. You look at you, you try to create almost like a double life on the internet. You just try to look like everything’s better than it really is” (Kathy, 30 years, scarring).

“I think that we’re as a society anyway, we really struggle with likes and you know, people thinking we look good and portraying ourselves on social media to have this perfect lifestyle, even if we say we don’t, I think we do sometimes, so growing up with a visible difference, you’ve got that on top of already the normal stress of going ‘I’ve got to put a filter on this cause my face is bright red’ or ‘what if this person notices this?’ It’s really hard because you want to be raw and you want to be transparent and that’s what social media is now, but it isn’t, and the filters are just getting more real looking so it’s really difficult. And I think there’s added pressure of growing up on social media when you’ve got a visible difference” (Catherine, 22 years, eczema).

Catherine describes how social media should be real or ‘raw’; however, it is often a distorted depiction of reality, whereby so much of it is built on tools to make your life look better that it is very difficult to be transparent and authentic. In addition to this, social media functions by enabling engagement and connection between users, including through liking, reacting, sharing, and commenting on other people’s posts. Although the participants had discussed how this feature encouraged them to be more confident sharing photographs of themselves (see theme 2.1), some acknowledged that their posting behaviour was ultimately driven by the desire for external validation:

“I think it’s always, you know, as much as we pretend that external validation is not necessary, I think that’s always good to, it makes you feel good to get external validation that your photo’s nice…I was always posting a picture and if I in 24 hours sometimes I hadn’t got enough likes. Sometimes I take the picture down, I just delete it” (Rahul, 33 years, NF1).

Phoebe discusses this phenomenon being a ‘double-edged sword’: although she gains initial positive reinforcement when posting an image that conforms to these standards, she later feels guilt over the in-authenticity:

“I think it feels good in the moment. It feels good to get this nice feedback afterwards, but then actually makes a feel really bad because you’re thinking that’s not the real me, this is the money shot me… It’s not who you’re going to see in in the morning when they wake up… So it’s a kind of double edged sword” (Phoebe, 38 years, dermatillomania).

Although these pressures were persistent, some of the participants had overcome them and felt that being authentic was more important than receiving external validation:

“I used to heavily filter my photos but like now I realised that it’s like portraying, it’s like making young women more mentally ill because of like how much celebrities filter the photos and I’m not going to live my life, my life as a lie. And I put, like, put myself in social media as, like an honest person”. (Jessica, 21 years, Ectodermal dysplasia)

In summary, the participants often felt caught between wanting to gain external validation and being authentic online; however, a number felt that the benefits of being positive role models and portraying themselves realistically outweighed the need for validation and helped to present people with visible differences in a positive way more broadly.

3.1. “Being able to find a community of people”: condition-based community for connection, support, and information.

Most participants were members of, or engaged with content from, condition/injury-related communities on social media. Participants described social support, information on their condition and treatment options, and sharing or reading personal stories as being the main functions of these communities. Many of the participants had originally felt isolated and different from their peers because of their condition and, especially for those with rarer conditions, did not know anyone else who shared their experiences or looked like them. Amelia explains how she felt very lonely when she thought she was the only person with psoriasis but, by sharing her experiences online, she came to see many other people have the condition and she found people she could relate to:

“I think any condition or any visible difference can be really lonely and if it’s something that is also quite rare as well…. none of my friends had psoriasis and I was really embarrassed because I had it on my scalp and then it started to come all over my face, which is obviously quite erm hard to hide that...and I know it sounds really silly now because I know there’s so many other people that do have it, but at one point I genuinely thought I was like, the only person in the world who had, like, psoriasis on my face, cause I just never knew anyone else who did. And so that’s why I started my Instagram in lockdown… and that was when I saw so many other people who were like me and I was like, ‘ohh wow, there’s like so many other people who have psoriasis’ and it’s like a really common thing and I just didn’t know. (Amelia, 26 years, psoriasis).

For Amelia, social media opened a new world of people which allowed her to “find[ing] people to talk to and when other people don’t understand. Obviously…my friends don’t have it, my family don’t have it. It’s just nice to talk to other people”. Having been misdiagnosed for many years, Sandra also felt like she was the only one who looked like she did and always had her experiences dismissed by others. However, joining an online support group enabled her to meet other women with lymphoedema and eventually see other people who looked like her:

“It started as an online community, but people have got together... [they are] just a group of women like myself who and one of the ladies there she set up a meeting two or three times a year…I walked into this room with the Lipoedema group and they were all these people who looked exactly like me” (Sandra, 68 years, lymphoedema).

It can be seen here that being able to foster real-life connections from meeting people online was an important time for Sandra because it allowed her to finally see other people who looked like her. In addition to not feeling alone, online communities also provided emotional support:

“It’s, it’s supportive. It’s just like people like saying nice things like. I don’t know, just being there, just being like ohh I’m here if you want to talk or I understand what that’s like. And ‘ohh I tried that it didn’t work for me either’. Or that sort of thing. It’s just nice. Yeah, it’s just nice to like have, like I say, like that sort of community to talk to” (Amelia, 26 years, psoriasis).

On the other hand, rather than gaining specific support or interacting with others, Jasmine used social media to explore presentations of her condition, vitiligo, in a positive way.

“I personally like just like picture ones instead of like reading experiences or whatever. And it sometimes just like a really artistic like photography picture of someone with like vitiligo and it’s like in black and white or they’ve got like paint splashed on them or something or something where it literally looks like artwork of where they’ve almost enhanced pictures for the better or yeah, I was really into like researching at one point of like fashion shows and like other stuff where people, it’s almost one of those visible differences that is like really interesting to look at and it’s not, it’s nice for me to look at it on other people as well and just whether it’s like sense of community or something, but to just see it on other people and and see it like in my opinion, look like really cool as well and like different like patterns and everything. (Jasmine, 18 years, vitiligo)”.

Overall, the online communities helped people connect with others who had shared experiences and looked like them. This made them feel like they were not alone and allowed them to gain emotional and practical support. This was particularly beneficial for individuals with rare conditions who may not be able to meet one another in person.

3.2 “Having stories, warts and all”: The power of advice from experts by experience.

A central aspect of visible difference communities on social media was their function as a platform to share and receive condition and treatment related advice and information from/with others with similar experiences. As Christine explains, the nature of social media, whereby content is generated by members of the public, means much of the content features posts from people sharing personal experiences of health conditions rather than the factual, scientific focus often shared in traditional media, which focuses on the condition, rather than the person experiencing it:

“Social media is very much built on sharing your experiences…it’s just a very convenient medium to share your personal experience, instead of just the, I don’t know, the very harsh science of it” (Christine, 22 years, cleft lip and/or palate).

Another benefit of social media groups relating to different visible differences was that they showed the reality of conditions which helped prepare an individual when they were at the beginning of a journey and wanted to find others they could relate to:

“There’s often groups of happy looking people without their wigs on all smiling and wearing the same T-shirt, you know, at an event or whatever, which is great. But when you’re in the mix or midst of it all and you’re trying to navigate stuff, you can’t ever imagine being that person…You know, and having stories, warts and all, you know, is I think quite powerful.” (Zoe, 49 years, alopecia).

The way Zoe describes the ‘warts and all’ suggests that these groups are helpful by laying the condition bare and helping her to understand what the experience can really be like. Similarly, Daniella found that she was able to connect with others with the same rare condition through social media and gain personal feedback and advice relating to potential treatment options:

“I found I was able to connect with people who had this condition by using hashtags, and given it is quite rare in the UK, it was good to be able to find people who are dealing with the same issues, including people on the same medical treatments with whom I could discuss side effects and how they manage them” (Daniella, 44 years, lichen planus pigmentosus).

In conjunction with this, Christine had created an account to specifically document her surgery for cleft lip and/or palate to help prepare others. Sharing her story had a two-way benefit whereby she was able to help others, and she gained a sense of pride from being able to help others through her own challenges:

“It felt really good to have an impact on other people who can be better prepared for what it was going to be like for them.” (Christine, 22 years, cleft lip and/or palate).

In addition to practical and treatment-related information, Amelia felt that understanding the impact of a condition on other aspects of people’s lives and their overall wellbeing was beneficial and something that was missing from treatment more generally:

“I think its just talking to people about, you know how they’re feeling as well, like in other ways, like how it can affect other things, like your mental health or like your work or relationships. Yeah, that’s just so much that they just talk about on it. Treatments I guess, I think treatments and like progress and people’s journeys like the most I think people talk about” (Amelia, 26 years, psoriasis).

As someone who shared their surgery journey on social media, Zoe felt conflicted about the experience. On one hand, she recognised the power of being able to provide practical guidance and reassurance to others in the similar situation; however, as social media is a public platform, she was also followed by others from their personal life:

“It was very helpful because I would have a lot of people who had either been there or were getting ready to be there commenting on how either they’d experienced similar things and this is what helped, this is what I did, that type of thing. But it was also very uncomfortable, because people who knew me in real life followed the account. And like, yeah, I don’t know, there’s an inherent vulnerability of talking about I don’t know how this is like an appearance based thing, It’s a plastic surgery. And it’s weird to be like here are my insecurities that I’ve written down, and you can now read and keep in your mind” (Zoe, 49 years, alopecia).

Although their experiences were, overall, positive, several participants also expressed some concerns about using social media for sharing condition related information. For example, Sandra spoke about how people, who are often desperately seeking support, might use social media groups to try and gain a diagnosis of a condition from others with it:

“There’s also the downside of it is a lot of people posting photographs of their legs and saying, ‘do you think I’ve got lipoedema?’”. (Sandra, 68 years, lymphoedema)

Indeed, social media is largely unregulated and therefore information, including about treatments, can be disingenuous or harmful. Overall, the participants gained benefits from being able to hear from others with lived experience, who could provide guidance beyond medical information. Sharing experiences could be rewarding and help others but could come at a cost of sharing with others who the information was not intended for and there were concerns about the regulation of information online.

3.3. “You can be an ambassador for what you look like, but you don’t have to make that your whole personality”: feeling a duty to advocate online.

Many participants also used social media as a platform to engage with and post content that raised awareness of appearance altering conditions. However, despite wanting to be a part of positive change for those with visible differences, some experienced a conflict between feeling duty-bound to advocate for their condition, but equally not wanting their condition to define their online selves. Participants felt that social media provided a space for realistic and positive information about visible differences, which challenged some of the more stigmatising content on other parts of the internet:

“It’s just about changing the information that’s already out there. I mean, I know that probably about 10 years ago when you Google ‘CMN’ (congenital melanocytic naevi) on Google Images, you get like horrific images of like children in like Non-Western countries that’s dying basically. And it’s just about sort of like changing the narrative of like, all right, well, yeah, it’s not going to look pretty if you’re having it removed but like, actually there’s like lots of other people now on social media who are all promoting it. (Taylor, 22 years, CMN).

Moreover, Rahul expressed how mainstream media dehumanises people with visible difference by using them as character tropes for villains or victims. However, social media provides a user-generated space to challenge this and show that people with visible differences are not defined by their conditions:

“There needs to be more content, more sort of information about this the visible difference community. More people telling their story, more people talking about their challenges, and more people talking about how we overcome that. The more we start talking about it, the more we start posting about it, the more people will see it and the more people who are actually we need to start normalising this. And I think media in general need to do a better job that needs to be more positive representation in films, in documentaries, in TV in general”. (Rahul, 33 years, NF1).

Moreover, for many, social media provided a platform to “promote a message of awareness and acceptance” (Phoebe, 38 years, dermatillomania) of visible differences:

“I think it’s really positive to show skin with acne that it’s normal to have, you know spots and scars… you often can feel that other people find you disgusting basically, whenever I had some active scabs or spots on my face, I was always very self-aware of how disgusted other people can potentially be with it because it involves blood and it involves puss and involves things like that just makes us naturally very often go ‘eww’. And it’s just there on your face so. And having when it comes to this photo, what it does really good is just that it shows that you can have those changes on your skin and that’s OK and it should be seen as normal (Phoebe, 38 years, dermatillomania).

In relation to normalising the condition, Lola describes how she wants to show people that someone with a visible difference can still enjoy beauty practices such as wearing makeup:

“I am beautiful and I just wanted to show like I’m just like another person who likes to wear makeup and likes to look nice for things…I don’t want to give the opportunity for people to patronise me, but at the same I try to see it to the positive thing that I could be, you know, like a good representation of me” (Lola, 36 years, scleroderma).

The power of these posts can be seen in the quote from Daniella where she reflected that as well as challenging the perceptions of society, posts normalising visible differences also challenge her own internal biases towards difference. As a member of society, she is also vulnerable to internalising stereotypes:

“It can be quite empowering to see people with visible differences being ‘visible’ and normalising their differences. I find these posts have a positive impact, not just on how I feel about myself, but on my attitude to other people with visible differences, which is less judgmental (Daniella, 44 years, lichen planus pigmentosus).”

Some participants felt it was necessary to advocate and raise awareness in order to take ownership over ensuring that things change, and the next generation live in a more accepting world:

“A next generation is going to be brought into this world and they need to be aware that there’s a lot of people who are different and then they deserve to have the same, you know. Same environment, same seat at the table, whatever you want to call it, but it’s just we’re all in here at the end of the day” (Lola, 36 years, scleroderma).

On the other hand, some participants were reticent about advocating on social media because they felt it could become an all-consuming role and that even if they used their platform in a positive way, they could become embroiled in political and potentially negative online culture:

“I don’t know if this is because my generation or whatever, but I get tired. I get tired of negative comments, regardless if it’s on my defence, as in the way I look…I get [to] a point that I get exhausted with the all the political things” (Lola, 36 years, scleroderma).

Nonetheless, others expressed that it is possible to find a balance and “you can be an ambassador for what you look like, but you don’t have to make that your whole personality” (Taylor, 22 years, CMN).

Overall, the participants felt that using social media to raise awareness was a positive thing; however, some also expressed concerns that social media is often an echo chamber, and those who would benefit from understanding more about visible differences were not likely to view these posts:

“The problem, especially with facial differences, is getting it to people without facial differences like spreading it enough for them to actually see the post?” (Zoe, 49 years, alopecia).

In summary, this theme related to the power of social media in challenging stereotypes and stigma towards visible difference. Many of the participants felt that they should also use the platform in this way; however, using it to raise awareness as well as for personal reasons could be exhausting.