Lived Experience Matters: Living With Facial Eye Disfigurement

But as Dr Zali O’Dea writes, there is a dearth of information in the research literature regarding the psychological and psychosocial aspects of the lived experience of people living with a facial eye disfigurement (FED) and how clinical staff need to more effectively meet their needs.^4-7

My Story

I am a survivor of a car accident as a newborn baby. In the ’70s there were no special car seats for babies to be transported from place to place safely. I gained an acquired brain injury (ABI) from the accident. I live with partial to full third nerve palsy. The car accident affected my young parents as well. Physically, my father, who was driving, sustained whiplash. My mum, a broken ankle, and stitches on her forehead, protected me from becoming a projectile missile, smashing through the windscreen. The car was a write-off. I was found at my mother’s feet after she screamed, “Where is she?” I was just out of hospital and 10 days old.

That car accident changed my entire life and that of my family. I was bullied horrendously during primary, secondary, and even into tertiary studies as I attempted to gain my Bachelor of Education. Even as I entered teaching, the prejudice and discrimination from teacher colleagues, parents, and children I experienced was due to my appearance living with partial to complete ptosis; the obvious outward appearance of living with third nerve palsy. At work I was pigeonholed into working with special needs children because I would have “such natural empathy, because of my face”, as a colleague explained.

I re-educated myself with a Master’s in Counselling and then I did my Doctorate, specialising in the lived experience of people living with FED and their family members. My study was the first extensive research to explore living with FED in detail from a non-medical viewpoint. As a researcher holding insider status, I allowed my participants to be the expert of their own experience.^6,8-11 I believe story telling is powerful, used through the ages to share and pass on information. Statistics change; people’s experiences and stories don’t. They offer a glimpse into the daily grind of living with FED or an eye-altering appearance, no matter how slight or how severe.

As a consequence of living with third nerve palsy, I am monocular. This places me in a unique and somewhat difficult situation. I am not dubbed as physically ‘disabled’ nor am I seen to be ‘visually impaired’. However, I argue I am socially disabled, meaning that society treats me differently, in a negative way, regarding how people choose to interact with me. I am not alone in this experience as many people living with FED experience such discrimination and labelling.

An Increasing Problem

This matter is becoming more visible and increasingly pressing. For example, in May 2024, The Royal Victorian Eye and Ear Hospital published a LinkedIn post stating there had been an “increase of 41% [in 2023] of young tradespeople coming into the hospital with penetrating eye injuries sustained at work”. While some eye injuries are temporary, others are not. Those serious cases, that leave people living with monocular vision and FED, have long-lasting psychosocial and psychological ramifications upon the person’s life – as it has with myself.

Monocular vision does not get much attention as a vision problem, and neither is it addressed regarding its psychosocial and psychological impact.¹² Recent commissioned research on global eye health spoke about the increase of monocular vision and pointed out that this was not even considered when addressing people with eye problems.¹³ This is a poor state of affairs. Living monocular or indeed with slight to complete ptosis, such as I do as a result of third nerve palsy, isn’t recognised and is definitely not seen to be having a social and emotional impact. I run a Facebook page supporting people living with third nerve palsy. Anecdotally, the biggest complaint is that we are dismissed by medical personnel, as well as society when we speak about our physical symptoms that are atypical, and how that affects our social and emotional wellbeing.

Addressing Psychosocial and Psychological Aspects

Developing a holistic approach in ophthalmology is important and should incorporate the psychosocial and psychological aspects of living with FED. For example, it is recognised that the more psychologically ready a person is for surgery, the better the surgical outcome may be.

Psychosocial
People living with FD/FED are viewed to be less than others and subsequently spoken to and treated that way. This is evident when speaking to medical professionals as well as interacting with the public. People living with FD/FED are deemed to be:
• Less employable,
• Less dateable,
• Less likely to choose to have children,
• Less likely to go on dates, and
• Less likely to complete study or further their studies.

People living with FED experience bullying, discrimination, and often unwanted or unwarranted help. Unwarranted help, such as being assisted to find items in the supermarket when help was not requested, or, unhelpful comments such as ‘have you ever thought of wearing an eyepatch?’ Many people struggle in silence, because FED is often deemed as a ‘slight’ disfigurement and so the myth of the greater the disfigurement; the greater the distress is perpetuated. These issues do not diminish over time, nor are they locked into a particular stage of life; rather they are ongoing and ever present, regardless of age and gender.

Psychological
People living with FD/FED are more likely to experience:
• Heightened anxiety,
• Depression,
• Becoming socially reclusive,
• Hate crimes,
• Stares,
• Avoidance, and
• Being spoken to as if they were intellectually impaired.

Many times, when people living with FED share their lived experience with others, they are disbelieved. This is again because of the myth the greater the disfigurement; the greater the distress. The more ‘nearly normal’ a person appears, the greater difficulty our lived experience is. We are not believed or validated. My research found that people living with FED experience several kinds of grief: Disenfranchised grief – a grief that does not fit the traditional forms of grief and therefore is not validated and not supported. Anticipatory grief – an ongoing sense of uncertainty of what will happen next, for example, ‘will I get stared at today when I go to the supermarket’. And lastly, chronic sorrow – a lifelong feeling of sorrow or sadness that society does not understand; that there is no support. Chronic sorrow is made up of multiple losses over a prolonged period of time – possibly lasting for the duration of a person’s life.¹⁴

Practical Steps

Answering Patients’ Questions

Often patients come in expecting the medical practitioner to know everything and be able to explain everything simply. Sometimes this is not possible; nothing is black and white. If you do not know the answer to patients’ questions, that is ok, acknowledge that you don’t know the answer (actually, they might have an answer, even if it is one you don’t know).

If you say that you are going to research into the matter, one of the complaints I hear is there is no follow-up with the patient. Even if you found nothing new, please communicate that to your patient so they feel valued and heard.

Listen
Listen for statements like:
• “I don’t go out much.”
• “I’ve lost interest in my hobbies.”
• ‘I’m finding work hard.”
• “I stay in the car at school drop off and pick up.”
• “I leave early.”
• “I choose to shop online for my groceries.”

These are the sort of statements that may be voiced during consultation. These are clues on how the patient is coping psychosocially and psychologically. Psychosocial and psychological issues may be given a cursory or assumptive question such as: ‘So all’s going well at school/ work/with the family/with you then?’ This type of assumptive question ticks the box on asking about a patient’s wellbeing, but shuts down the conversation. The reasons for doing this may be a lack of practitioner awareness of support options, a lack of psychosocial awareness, or even personal barriers (not feeling confident to ask), and organisational barriers such as a lack of time within the consultation.¹⁵

Professional Development and Support

Research points to the need for psychosocial and psychological training for health care professionals and their teams, as well as the need to be able to refer to appropriate support. Personally, I inquired at several support organisations such as Vision Australia, however no one catered for the kind of blindness or FED I had. My proactive stance led to nought. I wanted help and guidance, to know of an organisation who I may seek help from, but again, there was nothing for ‘cases’ such as myself.

As a result, I saw a growing need within the population to support FD/FED and in 2015 set up Karibu Anawim meaning ‘Welcome to The Way of Victory’. My organisation offers various forms of support for those living with FD/FED, such as personal counselling, as well as consultancy and professional development for professionals. A good resource for information is our organisation’s website and YouTube channel.

During 2024 I have presented a topic related to living with FD/FED every Friday morning on YouTube and have regularly had ‘special guests’ talking about their experiences of living with FD/FED. If you are concerned about the psychosocial/psychological wellbeing of any of your patients, please either refer them to us, or, at least inform them of Karibu Anawim and our services.

Dr Zali O’Dea is the Founding Director and Principal Counsellor/Educator of Karibu Anawim. Karibu Anawim trains, equips, and nurtures individuals as well as their family members living with facial disfigurement, offering consultancy and professional development to professionals.

Dr O’Dea regularly presents and is involved nationally and internationally in raising awareness about the issues pertaining to living with facial disfigurement and facial eye disfigurement.

References
1. Barker R,Hockey R, Spinks D, Miles E. (2003) Facial injury. Injury Bulletin, Queensland Injury Surveillance Unit. 2003 Sept (79), available at: metronorth.health.qld. gov.au/qisu/qisu_publication/bulletin-79-facial-injuries. [accessed July 2024].
2. Northey LC, Bhardwaj G, S.Curran S, McGirr J, Eye trauma epidemiology in regional Australia, Ophthalmic Epidemiology, 2014;21(4), 237-246. doi: 10.3109/09286586.2014.928825.
3. Changing Faces, Disfigurement in the UK, London, 2017. Available at: changingfaces.org.uk/wp-content/ uploads/2021/05/disfigurement-in-the-uk-report-2017.pdf [accessed July 2024].
4. Clarke A, Rumsey N, Collin JRO, Wyn-Williams M, Psychosocial distress associated with disfiguring eye conditions, Eye, 2003;17(1), 35-40. doi: 10.1038/ sj.eye.6700234.
5. Clarke A, Psychosocial aspects of facial disfigurement: Problems, management and the role of a lay-led organization, Psychology, Health & Medicine 1999; 4(2), 127-142. doi: 10.1080/135485099106270.
6. O’Dea Z, The ayes have it!, The Qualitative Report,2018; 23 (10),2313-2336. doi: 10.46743/2160-3715/2018.2897. 7. Coday MP, Warner, MA, Jahrling KV, Rubin, PA, Acquired monocular vision: Functional concequences from the patient’s perspective, Ophthalmic Plastic and Reconstructive Surgery, 2022; 18(1) 56-63. doi: 10.1097/00002341-200201000-00009.
8. O’Dea Z, Special ethical considerations for facially distinctive counsellors, Counselling Australia, 2015;15(3):28-32. Available at: researchgate.net/ publication/285512309_Special_Ethical_Considerations_ for_Facially_Distinctive_Counsellors.
9. O’Dea Z, Southcott J, “My Mummy has a hole in her face”: Living with Facial Eye Disfigurement, The Qualitative Report. 2023; 28(11)2995-3015. doi: 10.46743/2160- 3715/2023.6098.
10. O’Dea Z, Southcott J, “Everything seems to be the right eye in our family”: Intergenerational family living with facial eye disfigurement: An interpretative phenomenological analysis, The Qualitative Report. 2024;29(1);162-182. doi: 10.46743/2160-3715/2024.5993.
11. O’Dea Z, Southcott, J, “I’m his mum and it is my job to keep him safe”: Mothering a child living with facial eye disfigurement, Applied Research in Quality of Life. 2023; 18(5):2579-2604. doi: 10.1007/s11482-023-10199-4.
12. Buys N, Lopez J, Experience of monocular vision in Australia, Journal of Visual Impairment and Blindness. 2004; 98(9): 519-533. doi: 10.1177/0145482X0409800904.
13. Burton MJ, Ramke J, Faal HB, et al., The Lancet Global Health Commission on Global Eye Health: Vision beyond 2020. Lancet Glob Health. 2021 Apr;9(4):e489-e551. doi: 10.1016/S2214-109X(20)30488-5.
14. O’Dea Z, What are the lived experiences of people livinv with Facial Eye Disfigurement (FED) and their family members?, PhD, Education, Monash University, 2023.
15. Gee C, Maskell J, Williamson H, et al., Opening a Pandora’s Box that can’t be salvaged: Health professionals’
perceptions of appearance-related care in an Australian pediatric specialist hospital, Body Image. 2019; 31: 1-12.
doi: 10.1016/j.bodyim.2019.07.004.