4.1.1 Sub theme 1.1 “I thought it was just me”.

Although all participants were aware that they struggled to recognise people they knew and had poor face recognition, they had usually been unaware of the existence of DP as a condition for many years. Instead, they often believed their difficulties were “my own fault,” unique to them, or a result of “some inadequacy.” Several participants reported that their awareness that DP is a scientifically and, in some cases, medically recognised condition [39] came relatively late in life, for example, one participant was in their sixties and others were in their forties.

“I…found a few websites with interesting information, which helped me understand my difficulties were real, and not just something only I experienced, or imagined I experienced.” (AF009)

“I have only been aware of…face blindness properly for only a few years, I didn’t know it was a thing.” (DA028)

Apart from one participant who was ‘diagnosed’ by fellow medical students during a lecture covering prosopagnosia, it was much more common for participants to discover the existence of DP or face blindness for themselves. Some described a “light bulb” moment when they heard or read about prosopagnosia and recognised their experiences in the description. Often this was though media coverage, a podcast, or - less commonly – as a result of studying psychology or reading a novel featuring a character with face blindness [40]. Most participants described using the internet both to seek an explanation for their face recognition difficulties (“Dr Google”) and to seek further information about DP once they were aware of what to search for.

4.1.2 Sub theme 1.2 The struggle to find reliable information.

Almost all (n = 27) participants had tried to find information and advice on DP. We enquired about sources and particular sites that participants had used to find out more about DP once they knew about the condition. The internet as the main source consulted but relatively few participants could recollect specific sites. Several participants mentioned Facebook self-help/support groups. The most mentioned information sources that participants could remember accessing belonged to university research groups, in particular faceblind.org, a site run by Prof. Brad Duchaine at Dartmouth College, USA and the support organisation Faceblind UK. Three participants had looked for information on the NHS England website, however two reported they found the information provided there to be of limited value and “very basic.” (DA001).

4.1.3 Sub theme 1.3 Perceived value in diagnosis.

Obtaining a formal diagnosis did not initially appear to be important to all participants, only 34% (10/29) had sought testing or diagnosis. One possible explanation is that several participants noted that that [in the UK] there is currently no treatment or support for DP and believed that UK health services have limited awareness and expertise around the condition. As a result, some participants were uncertain about the value of a diagnosis and/or where to seek support:

“I have never discussed it with a medical professional (and my understanding is that it would be hard to access one who knew as much as I do about the condition).” (AF003)

“I didn’t feel like there was anywhere I could go. The NHS website just describes it but doesn’t say what to do next.” (DA013)

A minority of participants (n = 7) reported that family or friends had suggested they get tested for prosopagnosia, but it was not clear from responses whether these suggestions were offered after participants shared their own suspicions or concerns about their face recognition abilities, or whether this was unprompted advice.

Despite our sampling method, only one participant had received a formal diagnosis (from a researcher) prior to our study. Three more had been told by researchers they met the classification for DP, for them this constituted a diagnosis. A minority were keen to be formally diagnosed themselves; they felt diagnosis could be helpful for achieving some recognition of the challenges they experience as well as providing an explanation to others that, crucially, would be accepted. Even when not formally diagnosed, self-diagnosis through completion of an online test or simply recognising oneself in a description of DP allowed participants to give a name to their difficulties. Learning of the existence of DP as a condition appeared to be very important to many participants for whom the realisation that their difficulties were due to a recognised condition brought relief, validation, and a welcome explanation for why they found recognising people so difficult. Only one participant had approached a GP to request testing for possible developmental prosopagnosia; they reported the GP “shrugged [their] shoulders” and said it was “not possible to test for it and not much you can do about it.”

We enquired whether participants had disclosed their difficulties to others (separate from seeking a diagnosis). As shown in Fig 4, only a small minority (6.9%) had discussed their face recognition difficulties with a doctor, and only 24% had told their manager. Even more strikingly, around 20% (6/29) had not disclosed their difficulties even to immediate family (a similar proportion had not told an intimate partner although it is possible some participants have not been in a relationship since they became aware of their difficulties with face recognition). No participant reported discussing their difficulties with a teacher, even though at least two were keenly aware of their difficulties while still at school.

Even within families, diagnosed or suspected DP was not always openly discussed. Seven participants knew of close family members who also had very poor face recognition, and one respondent believed her young daughter “might also have issues with faces.” Two participants mentioned that they only become aware of their own parent’s face recognition difficulty after disclosing their own difficulties. Given that many participants described researching prosopagnosia extensively online, it might have been expected that they were also aware that DP often has a hereditary link, so it was initially surprising to us that many participants reported not knowing whether other family members were affected. This lack of knowledge of family members’ difficulties, despite information online about the hereditary nature of DP, is consistent with the finding that relatively few (5/29 or 17.2%) reported having told any of their extended family that they had difficulty recognising familiar faces (Fig 4) indicating that the topic is not something most participants appeared to feel comfortable or able to bring up, even among extended family, perhaps due to perceived stigma or self-stigma.

4.2.1 Sub theme 2.1 The most challenging aspects of DP.

We asked participants what they found most challenging about having poor face recognition. Reponses tended to highlight either situational factors, discussed here, or the emotional impacts which are reported below. Meeting people out of context was commonly reported as challenging, as were situations where large numbers of people were present, for example conferences, parties, and large social events:

“My daughter started school last year and having to meet 30 new kids and 60 new parents was pretty much my worst nightmare!” (DA001)

“Large rooms are hard, it’s a bit Where’s Wally. Everyone merges into non people.” (DA012)

For most participants, DP did not solely affect their ability to recognise acquaintances or individuals they had only met briefly. Rather, it also caused considerable difficulties recognising people with whom they had close relationships and/or saw very frequently including office colleagues, close friends, neighbours and family:

“I could easily walk past pretty much anyone I knew except possibly my husband and children. It is isolating and exhausting living in a world of strangers.” (AF125)

“Sometimes when I am off work for a week and come back it’s really hard to figure out who is who.” (AF017)

“If there are lots of people around it is particularly challenging to even find a familiar face. For instance, in a shopping centre or airport with my husband I will ask him to wait in a specific place if I visit the loo so that I can find him when I come out…” (AF009)

Work was frequently mentioned as a particularly challenging setting. Reasons given included the need to interact with relatively large numbers of people, for example in universities, schools, hospitals, or business consultancies where teams and clients changed regularly. In some work settings, uniforms were worn thus removing cues that participants often relied on such as clothing and accessories. For others, the high cognitive demands of work prevented the use of the deliberative, associative face learning and recognition strategies they usually relied on.

“If my brain is busy and I’m focusing on multiple other things at the time of meeting someone I may struggle to recognise them later that same day…If I’ve been introduced to multiple people at one time I might struggle to identify them later on. This is particularly severe if…trying to retain other information relating to the job I’m doing or working on something particularly complicated.” (AF004)

Although most participants provided detailed accounts of settings, or circumstances, they found particularly difficult, a small minority (n = 2) initially reported (in response to a direct question) that their face recognition difficulties cause no major challenges in their life. Despite this, both later reported embarrassment during social encounters, with one going as far as to say that when they do not recognise someone they know “Through the eyes of person who recognises me it most likely devalues what they considered to be a close relationship and can actually change the way in which they think of you but in a negative way” (DA014).

4.2.2 Sub theme 2.2 The use of effortful strategies for recognition.

We enquired about the strategies people used to recognise others. Spontaneous responses are categorised in Table 4 below alongside examples of how and when strategies can fail. After participants provided spontaneous responses, they were then provided with a list of strategies that DPs had previously described using and asked to indicate if they had ever tried them, and, if so, to rate how useful they found each strategy (Fig 6 below).

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Table 4. Compensatory strategies (spontaneous report).

https://doi.org/10.1371/journal.pone.0322469.t004

The complexity of strategies and approaches described highlights the sheer level of “conscious effort” that many participants were required to make to try to recognise familiar people, a task that those with typical face recognition ability can achieve rapidly and effortlessly. Participants were usually aware that some strategies were more reliable for them than others, and that particular approaches often failed (particularly reliance on clothing, situational context, and hair). As a result, participants often adopted a staged approach whereby they developed a range of potential strategies and tried them out either in combination, or in turn:

“It’s more helpful to learn the things less likely to change often, e.g., voice> tattoos> body shape> hair colour> hairstyle>...and then clothing etc. is less helpful in a long-term sense.” (DA001)

This participant emphasised that sometimes it was the combination of cues that most aided recognition:

“…it’s easier to recognise a couple (ah yes, she’s the petite athletic-looking Asian lady, who has a very tall white husband with a beard, etc.) because the combination of features is more unique.” (DA001)

Although these atypical strategies could often assist with person identification, it was not always possible to employ them (see second column, Table 4). Furthermore, many participants reported that they found their strategies were much less helpful when meeting multiple people at the same time, perhaps explaining why so many participants said they found group settings particularly challenging. The strategies were also reported by many to be more helpful in the short, rather than the medium or longer term:

“I can do a sort of “emergency recognise”, where I memorise all the shapes of the facial features in the same way you would with a memory game (e.g., memorising objects in a room etc.) It only lasts for an hour or two, and if I encountered them again in the future, I’d have no better chance of recognising them than anyone else.” (AF006)

Participants’ regular, embarrassing failures of face recognition were not due to lack of trying. All participants reported having tried at least four different strategies [median = 8, range 4–13] with varying degrees of success (Fig 6). For example, the use of written notes was mentioned by 28% of participants and found helpful by 100% of those who used it; this took the form of making detailed notes about appearance, mannerisms, characteristics, typical greetings, and hobbies, as well as or sketching bags or typical seating plans. Additionally, several participants described actively “revising” their notes in advance of expected encounters.

Most participants described using conscious, deliberative strategies to assist with identification. However, one participant reported that their strategy use was relatively unconscious, at least initially “I think I’ve always used these strategies even before I knew about prosopagnosia” (AF010) and another wrote that they had not realised that they were using any strategies until they read the list of possible strategies that others had reported using.

Less common, but interesting, recognition techniques included memorising, or keeping a record of, the typical greetings or idiosyncratic phrases that people use and a person’s smell (e.g., a distinctive fragrance worn). The increasing use of online meetings in both social and work contexts was mentioned by several participants as helpful, both because names appear beneath each face and because virtual meetings provide an opportunity to take screenshots of faces with names attached that can be used for future reference.

4.2.3 Sub theme 2.3 Differing beliefs about DP and its impact.

Several participants highlighted how, with hindsight, their face recognition difficulties have made certain life stages relatively easier or more difficult for them. A few participants felt that their condition affected them more as they aged, either because as “a youngster I was more frequently going out with friends and now realize I used to rely on them to “remind” me who someone was” (AF099) or because the number of people one is “expected to” recognise increases with age (AF003). The natural decline of memory in older adulthood was also highlighted as a factor by two participants. For one, this was because poorer general memory made it more difficult to implement their previously successful strategy of memorising features. By contrast, another felt they were more likely to be misjudged as “suffering from dementia (now that I’m a bit older)” (DA018).

Interestingly, one participant felt her face recognition abilities might have a hormonal link:

“This might sound slightly crazy, but …I find that I’m slightly better at recognising people during certain times of the month. Also whilst I was pregnant I went through a couple of months where I thought I recognised absolutely EVERYONE! That strong “I’m sure I know you from somewhere” feeling. (It felt like a super power, even though I’m sure I was 99% wrong, haha).” (DA001)

Over time, some participants reflected that they gained some acceptance either of the condition itself as “a limitation that I can do very little about” (DA020); or of the discomfort it causes during social interactions:

“…learning to accept the awkwardness of that second meeting where I am unaware of who I am talking to and just plodding on with the conversation anyway has also helped, as I will often remember who the person is eventually…” (AF099)

Although neither the participant information, nor the survey questions, framed DP as a disability or a form of neurodiversity or neurodivergence, it was notable that around 20% (6/29) of participants used these terms themselves when describing their experience, indicating that they had considered whether DP should be categorised in these terms. These participants expressed mixed views on whether they themselves considered DP a disability, but frequently commented that, despite the severe challenges DP presents, UK society does not currently recognise DP as a disability.

“I tend not to think of it as a disability, more an eccentricity.” (DA033)

“I don’t have a recognised disability but, also, I can’t do what other people can do so I’m at a huge disadvantage…” (AF125)

“I like to think of it as a superpower rather than a disability. But if we class it as a disability, it’s a hidden disability. People don’t realise you’re faceblind unless you tell them, and it’s usually not on their radar…” (DA012)

Others described DP, both directly and indirectly, as a form of neurodiversity. One participant expressed the wish that DP could be “ recognised by HR professionals as on a par with neurodiversity” (DA006) with another stating that “It needs to be seen as part of a spectrum of human abilities and not a disease.” (DA022)

4.2.4 Sub theme 2.4 Silver linings.

We enquired about what positives, if any, DP brought. One participant reported meeting his now wife as a result of mistaking her for someone else “something I am always teased about” (DA014)

Fascinatingly, three separate participants (DA012, DA015, AF019) noted that they could easily tell identical twins apart when their friends could not. Other participants worked with clients in sensitive confidential settings and found some occasional benefits to having DP.

“It is actually weirdly handy for my work role. I work face-to-face with vulnerable clients in the community and I know I will be unlikely to have that awkward moment of bumping into service users out and about.” (AF017)

An academic reported a similar benefit since, for example, they would never remember which student they had needed to tell off. A small number of participants felt that they had been able to turn some difficulties that DP presented into positives. For example, attentive listening (due to the need to seek conversational cues to identity), an ability to “pivot conversations” easily (when suddenly realising the person they were speaking to was not the person they had initially thought it was), and public speaking in front of strangers (all or most people look like a stranger to them). One participant wondered:

“I have a unique mind, somewhat gifted in music, mathematics, and wordplay. I have a lot of empathy, with animals as well as humans. Maybe these abilities are a result of space freed up in my brain where most people have a database of faces?” (AF019)

However, despite these perceived silver linings to the condition, 45% of participants (13/29) could think of no benefits:

“None at all. It’s rubbish.” (AF006)

4.3.1 Sub theme 3.1 This is emotionally hard.

Participants commonly reported that knowing they were going to have to attempt to recognise others, e.g., at a work meeting or socially made them feel “nervous”, “awkward”, “uncomfortable”, or like “a rabbit in the headlights” and often resulted in feelings of “anxiety”.

“Any occasion, social, or work, where one is expected to mingle and meet new people is hard; I can’t tell whether someone is a new person or not, so I can’t ever introduce myself to anyone (it might turn out we’ve worked together for 10 years).” (AF003)

For many, these feelings were much stronger than the “mild embarrassment” reported by one participant, and negatively affected many aspects of their social life. For example:

“I avoid groups of more than one or two people and feel very nervous in a group…. It is a shame as I love being with people… I rarely take classes or join groups with a hobby, because groups make me panic, it’s a big amorphous blob with lots of heads.” (AF125)

4.3.2 Sub theme 3.2 Isolation and social withdrawal.

“Social occasions are terrifying and exhausting. I am warm and friendly, just exhausted from trying so hard and very, very worried.” (AF125)

As a result of finding social situations so emotionally challenging, many participants reported often withdrawing, when possible, from social situations leading to a social life that was rather “stifled” as a result of their condition. Others said they deliberately restricted their social circle to a small number of close friends either because it took “monumental effort to learn a new friend” or because doing so limited the number of faces they were “expected to know” thus reducing the likelihood of “embarrassing” and “frustrating” failures of face recognition.

“To be honest, I usually avoid eye contact with a lot of people and definitely avoid starting conversation because that will make for an awkward meeting and me blushing and becoming embarrassed…I don’t have very good strategies, mainly avoidance of interaction.” (DA005)

“I avoid crowds and parties.” (AF019)

“I keep a very small in-person network, which works well as a strategy for facial recognition. Though sometimes I do feel isolated.” (DA012)

This sense of isolation was reported by many, though certainly not all, participants and several remarked that it had become more apparent in mid to late adulthood as they reflected on their life:

“It is isolating and exhausting living in a world of strangers” (AF125)

“When I’m thinking back now, I realise how isolating this has been. I would meet people, talk to them and maybe have a real connection with them, but then meeting them again, I’d talk to them as if I hardly knew them until I, maybe, managed to identify them.” (DA018)

Some participants believed that avoidance of social gatherings while growing up had also contributed to relatively underdeveloped social skills:

“I am unsure if I was always this bad, looking back I now believe this has been a big factor in my social skills which are rather weak at best.” (DA028)

“Because I’ve always avoided social situations, I haven’t had enough practice at how to behave, so I’m socially very awkward and often say the wrong thing, or act inappropriately because I wasn’t properly socialised as a teenager.” (AF006)

Although the vast majority of participants perceived that their conditions negatively affected their social and work relationships, such feelings were not unanimously expressed, one participant felt that that DP “hasn’t affected relationships with closer friends and immediate colleagues.” (DA009)

4.3.3 Sub theme 3.3 Negative impacts on family relationships.

For some participants, the impact of DP extended beyond relationships with friends and colleagues to their family relationships:

“My husband who I have been married to for 20 years, surprised me at the airport and I didn’t recognise him…” (DA002)

“I was accused by an ex-boyfriend of being racist because I didn’t recognise him when I bumped into him unexpectedly in the street, and he said ‘I suppose we all look the same to you’. This was pre-diagnosis, I didn’t know what prosopagnosia was, so I didn’t have a reply, and just felt awful because I thought he must be right.” (AF006)

One participant wrote movingly about how DP meant they were unable to develop a close bond with their extended family, echoing the beliefs reported above that DP had limited some participants’ social relationships:

“My dad was from a large Irish family…and I spent summer holidays in Ireland as a kid. I could never tell my many relatives apart, which I think affected my development of relationships with them. Now my dad has passed away, I desperately want to feel connected with the family, I miss being a part of it, but don’t feel I was ever able to get to know people properly so can’t reconnect now in my 40s.” (DA001)

Furthermore, multiple qualitative responses confirmed the quantitative results that recognition of immediate and wider family can also be affected (see section 3.2 Can DPs recognise close friends and family?). For example:

“Whilst I see faces and their features, they do not stay in my mind and I cannot easily see their face in my mind until it has permanently imprinted on my brain. I can just about recall the faces of my children but that is all. Everyone else has a blank face in my mind.” (AF125)

“Find my own children hard to tell apart in baby photos.” (AF001)

“I have consistently struggled to recognise several people [on my own doorstep] including my sister who have turned up unexpectedly.” (DA013)

Another participant who, despite responding that they could recognise their immediate family, later described an instance when they had not recognised their son when he came unexpectedly to meet them in a local shop. It is possible therefore that the proportion of DPs who can reliably recognise immediate family is lower than reported, either because of faulty recall or because being unable to recognise one’s own family is perceived to be socially unacceptable as the quote below illustrates:

“I would never dare to tell my husband, who now knows about my problem, or my sons that there are times when I have not recognised them…” (DA018)

The extent to which participants reported receiving emotional and practical support from family members was again very mixed. Many reported that their partners and family were “understanding”, often quietly reminded them who people were, and made efforts to research the condition:

“My family are supportive and never make me feel uncomfortable about me not being able to recognise faces.” (DA005)

However, around 20% (6/29) of participants also reported being “teased” about their difficulties recognising familiar faces and family members were not universally supportive:

“My close family sometimes tease me about it but are generally supportive.” (DA022)

“Close family not really interested and tend to think I’m making a fuss about nothing, apart from my dad (now passed away) who was delighted to find we had it in common. Partner initially thought I was being overly melodramatic, but I think is gradually coming to understand how distressing it is to realise after chatting to someone that it wasn’t who you thought it was, and you’ve been talking about things they have no clue about.” (AF006)

4.4.1 Sub theme 4.1 Anticipating and receiving negative evaluation causes concern.

The majority of participants perceived a strong social expectation that they should be able to recognise and therefore acknowledge people they had previously met and were aware that their condition meant they often violated these expectations. For many participants, it was feeling “pressured to recognise people I’m supposed to know” (AF125), rather than the cognitive difficulties associated with DP, which presented their greatest difficulties:

“I would say the most challenging [aspect of having DP] for me is when people seem put out by the fact I don’t recognise them and they think I should.” (AF009)

“I hate the beginning of parties when I’m introduced to someone…I try to memorise their name and what they are wearing so I don’t offend them later on by not recognising them” (DA001)

This sub theme was one of the most widespread, more than two thirds of participants expressed worries that their face recognition difficulty would be misinterpreted leading to negative evaluation from others. For example:

“If I think I recognize someone I always face a dilemma - should I smile and say hello (and risk being taken for a weirdo) or ignore them (and risk being thought stand-offish)?” (AF099)

“…people think I am snooty as I don’t say hello to them because I don’t recognise them…” (DA033)

“I am naturally a sociable person, but I worry that I come across as stand-offish, e.g., when I don’t recognise people in the park or the playground.” (DA001)

A few participants directly reported that this concern that they would be misjudged as uncaring, stupid, or rude led to anxiety or reduced self-confidence in social contexts linking back to subtheme 3.1:

“I have anxiety in social situations because I constantly think there are people there thinking I’m rude because I don’t approach anyone, ever.” (DA002)

“I worry that people will think I am rude or that I don’t care about them. I feel anxious when I know I will meet a lot of new people, e.g., new job/new social activity” (DA022)

“It massively affects my confidence when I’m in new situations as I know I will either come across as a bit dim or forgetful or cold and rude.” (AF125)

Additionally, one participant described how the worry itself exacerbated her face recognition difficulties and this insight may explain why some participants seem to perform better on computerised laboratory tests where the possibility of immediate, direct, negative social evaluation is absent than they do in daily life:

“In a group setting, it’s often useful to walk *away* from someone, even look at them from behind and from some distance away, because I often find that worrying about their face distracts me from using the strategies that do work for me - if I watch how someone walks, from behind, that will often settle it!” (AF003)

Although most participants reported worrying about what others might think in the context of in person social interactions, this could at times also extend to online social communication:

“I worry that I over-compensate in non face-to-face situations, e.g., chatting on the WhatsApp group - paranoid that I talk too much, or come across as too dominant, as I’m really just overcompensating for those face-to-face interactions.” (DA001)

Interestingly one participant reflected that they believed they experienced less negative evaluation when they disclosed their face recognition difficulties to others:

“Mostly, I feel that it’s a good idea to have told people, because then if later I fail to recognise them in a way which someone might find insulting, even if I have to remind them about my prosopagnosia, it goes better if they have a vague memory that I told them this before. (If you wait until someone is already feeling insulted and then mention prosopagnosia, I think it can just come over as an excuse.)” (AF003)

4.4.2 Sub theme 4.2 Mixed social reactions to disclosure.

Initially, there appeared to be a tension between participants’ reticence to openly disclose their condition (see Fig 4), something that might be thought to reduce the widespread fear among participants that they would be misjudged (as illustrated by the previous quote). However, a possible explanation for this reluctance on the part of many participants to tell others about their face recognition difficulties may be rooted in their past experiences of disclosure. Participants who had disclosed their suspected or confirmed DP status were asked about the kind of reactions they received, and they reported a wide range of responses to disclosures of DP, whether officially diagnosed or not.

Overall, most participants had experienced a sympathetic and supportive response from at least some of those who they told about their difficulties; however, this was by no means a universal experience and many participants perceived that their disclosure was met with a degree of suspicion and disbelief. Around 34% (n = 10) experienced supportive responses, and 31% (n = 9) felt believed and affirmed:

“Very surprised and interested in the condition but usually accepting and supportive.” (DA014)

“My family are supportive and never make me feel uncomfortable about…not being able to recognise faces” (DA005)

However, positive reactions to disclosure of DP were by no means a universal experience. Negative reactions were also widely reported (n = 8), including from close family and many participants perceived that their disclosure was met with a degree of suspicion. Participants reported scepticism or even “disbelief” both that such a condition exists, and/or that the participant has it. Further, some participants (n = 2) reported “very little response or acknowledgment” or a “lack of response” to their disclosure, suggesting that they had hoped for a more positive reaction, or at least some acknowledgement of their difficulty.

“Not sure that friends or work believe that it is a proper condition.” (AF010)

“My mother didn’t believe me” (DA020)

“My manager at work was horrible and said impatiently “honestly! We ALL don’t recognise people from time to time, it’s nothing unusual”…Partner initially thought I was being overly melodramatic, but I think is gradually coming to understand how distressing it is to realise after chatting to someone that it wasn’t who you thought it was.” (AF006)

Others described mixed responses to their disclosure with some people being ‘sceptical’ or treating the difficulties as a “running joke.”

“Most people I have told have been interested and curious about my experience, with a few exceptions, ranging from dubious to dismissive…My youngest brother was very dismissive and convinced this is just in my head.” (AF009)

Telling others about their difficulty was clearly not always an easy decision, one participant talked about “coming out” to her friend, suggesting perhaps some sense of shame and also an awareness that she had been deliberately concealing her condition for some time. Another reported that she usually only told people she’d known for some time and who she felt would believe her. Even when others had tried to understand, several participants reported feeling misunderstood due to “misplaced sympathy”, by which they meant that others attempted to show understanding but, in so doing, demonstrated that they had failed to fully comprehend the difficulties the participant was describing:

“Often, people don’t understand at first (and have not heard of it) and think I am saying that I forget names.” (DA022)

4.5.1 Sub theme 5.1 Support helps to navigate life with DP.

Most participants described instances when others had been supportive and understanding of their difficulties and emphasise how valued such support was:

“There’s this one colleague who understands and says “Hello, it’s [his name]” every single time we meet - and every single time I am grateful. This is too awkward for most people.” (AF003)

“My colleagues are good are introducing other people or telling me before a person comes up who it is…” (DA013)

“My best friend…now goes out of her way to let me know if she has done something different to her hair when I visit.” (AF017)

“There is one meeting I regularly go to, in which after I mentioned it, the administrator in charge asked if it would be useful if she emailed me a chart of who is sitting where, each time. It is fantastic - by ten minutes into the meeting, I have an ascii art chart of who everyone is.” (AF003)

4.5.2 Sub theme 5.2 Reluctance to request or provide adaptations and accommodations.

Although many of the suggestions such as name badges or introductions would be simple and low cost to implement, participants noted a frequent unwillingness (with notable, greatly appreciated exceptions) on the part of colleagues, organisations, and others to implement helpful adjustments:

I have been known to ask for, or ask the facilitator of a meeting to do a round of introductions, even when in principle everyone knows one another, just to help me. (But there is always the odd colleague who just says “oh everyone knows ME”!) (AF003)

I asked for name badges at meetings but no-one else was keen… it seemed a bit unnecessary for everyone else as they all knew who each other was (I had no clue who most of them were!) (AF125)

“It was treated as a joke. I was too embarrassed to pursue it.” (DA017)

Analysis also indicated a reluctance on the part of some DPs themselves to request accommodations, for example at work:

“I have not had the confidence to ask for any specific adaptions in my corporate job, other than sometimes asking team members to introduce themselves to clients first, so that I can hear the client’s name….I requested that [not-for-profit organisation] provided name badges in large capitals for the annual…conference, which they did. The request was received well. As an organisation founded on principles of equality, diversity, and human rights, I felt comfortable making this request. I probably would have felt less comfortable if it were a commercial organization.” (DA001)

“It doesn’t seem widespread enough to change how people operate. It’s not a visible disability so people can’t adapt to accommodate you.” (AF075)

Some participants negatively contrasted this absence of reasonable adjustments with accommodations they observe being routinely put implemented for neurodivergent colleagues and people with visual impairments.

“It would help if 1) People wore name badges, 2) People addressed each other by name, 3) People told me their names every time they spoke to me. 3 would be most effective, but unlikely to happen in normal life. I have experienced it in group meetings where blind people are present, and it helped me a lot.” (AF019)

4.5.3 Sub theme 5.3 Increased awareness to reduce anxiety.

Top of the list of things that participants felt would make life with DP easier were greater public and professional awareness and understanding and “recognition of the condition” particularly in schools and health care settings:

“Training for teachers, health professionals etc. to mention prosopagnosia would be useful - especially with some idea of prevalence, because I think it’s a lot more common than most people (with or without it!) realise, because most people tend to keep quiet about it or even not know there’s a name for their difficulties.” (AF003)

“Training for health professionals, wider public awareness…If other people learned about it, so that we could just say that I might not recognise you if we meet again, as I have Prosopagnosia - and they would understand. If they knew that it’s not because I don’t care about them or find them important and that I don’t have dementia.” (DA018)

“Get it recognised by HR professionals as on a par with neurodiversity and provide advice on how they can get managers to understand the condition and what people need at work - and that they are not stupid or rude when not recognising anyone.” (DA006)

4.5.4 Sub theme 5.4 Seek advice from experts.

Although some participants were able to suggest sources of information and advice they had personally found useful (see S5 for a complete list), it was notable that the majority (19/29 or 65.5%) felt unable to recommend any sources, suggesting a dearth of information and support for the condition.

“The majority of current resources I’ve found are inadequate. Many do not chime with my personal experience.” (DA012)

Among the participants who did recommend sources they had personally found useful, the importance of seeking advice from others with particular expertise and knowledge around face blindness was highlighted. This could be informal peer support from individuals with lived experience of DP, unspecified Facebook self-help groups as well as from DP researchers and voluntary organisations. Several participants mentioned the support organisation Faceblind UK, and the research website Faceblind.org as useful sources of information and advice for individuals with DP and their families, however not all participants were aware of such resources.

“The Facebook groups. Reading other peoples’ situations that I recognise so well. It has been quite liberating. Until a few years ago, I didn’t know there was such a thing as prosopagnosia! I always thought that it was “my own fault” somehow. I would definitely recommend these kind of groups.” (DA019)

“I possibly would recommend an official diagnosis for someone young, as this may help with coping strategies.” (AF009)