Guest Editorial - Living with Disfigurement

There's no art to find the mind's construction in the face. - William Shakespeare

These plastic surgery quotes were retrieved from New Zealand clinician sites on 4 December 2017.

“...it’s your face which people notice first. Your face projects an image to people about who you are.”

“Plastic Surgery: Empowering You With The Confidence To Succeed In Both Your Career & Social Life.”

“Look and feel truly amazing.”

“... facial features undergo gradual changes that can result in a tired, old, or depressed look, which may not project the way you actually feel.”

“The nose has importance both as a cosmetic feature of the face, forming the most focal point of the mid face, as well as a functional organ for breathing, speech and smell. Often patient who have deformities or irregularities of their nose on the outside may also be suffering from similar conditions on the inside. Interestingly, facial proportion is governed by mathematics and there is such a thing as the perfect nose for each face. The nose is such a focal point of the face, even small alterations to either the size or shape can have a dramatic effect on appearance.”

“Be The Person You Want To Be‎.”

I will be straight with you. I have facial trauma, disfigurement from head and neck cancer. I am defaced. However, it was not my own situation that led me to write about disfigurement. It was reading an online comment from another head and neck cancer patient that made me realise that we just don’t talk about disfigurement. And we need to.

In my conversation with another head and neck person, she wrote, “People said nicely to me that I was very brave to go out looking as I do. I mentioned it to my daughter and she said “Yes, you are. Cos if it was me I wouldn't.” Imagine that, being excluded from living life, because of how you look. As I have often said, there are days when I am not fit for public consumption.

I have noticed health professionals very reluctant to talk about my disfigurement. Even less comfortable exploring how it might affect my work or social life. I managed to have three occupational therapist consultations without discussing it once. I even spoke to an occupational physician, but for all his qualifications and experience, he could not speak the words either.

There is one time when healthcare professionals have plenty to say about appearance. They have many words, when they are selling cosmetic surgery. Read those quotes above again. The non head and neck cancer community are encouraged to seek a full and rich life. Their appearance, and their confidence in themselves are important elements. But what of head and neck cancer patients? Are they not invited to the conversation? Are cancer patients being shamed and blamed for their cancer?

People who suffer facial disfigurement as a result of head and neck cancer experience psychological trauma. They look in the mirror after surgery and do not know the person looking back. Their families and friends will not know them either. An identity and sense of self is lost.

I have had people who I have worked with for 10 years not recognise me. Even after an introduction, they think I am a new employee recently hired. They do not know the person sitting next to them is me. It has its advantages. I mean, how many times in your life do you get to be a completely new person. You can strike up whole new friendships all over again.

The face is a person’s sense of self. It is the integrity of the physical self. People who are defaced by head and neck cancer can have low self-esteem. Facial disfigurement can cause psychological dysfunction. This can impact on recovery and ability to lead a productive and satisfying life.

Facial disfigurement cannot be fixed with a visit to Look Good Feel Better. You can read about my adventure engaging with this service here. No amount of foundation, eye makeup, and lipstick can fix me.

There is some debate whether “disfigurement” is a good word to use in this situation. A disfigurement is something, for example a scar, that spoils a person's appearance. The Oxford English Dictionary explains that disfigurement is “The action of spoiling the appearance of something or someone; defacement.” To be  defaced is to “Spoil the surface or appearance of (something)” (Oxford English Dictionary).

And there lies the problem. To be defaced, you have to have had someone deface you. Your health professionals while having treated your cancer, have also defaced you. And some guilt and some remorse remains. Eric Levi, tells it well.

"I still have in my mind the image of my first patient diagnosed with this tumour. She’s a 30-year-old gorgeous young chic graphic designer who came in with a sore throat and a lump in her neck. The next thing we knew, she went under the knife and we cut open her beautiful neck and throat. She subsequently had chemotherapy and radiotherapy. She could not stop her tears from smearing her designer mascara and dripping onto her branded clothes. I cried with her when we discussed her treatment"   https://ericlevi.com/2017/07/27/world-head-and-neck-cancer-day-2017/

We need to talk about this, and the impact for patients, health care professionals, carers, and families (whanau).  I realise there are no clear guidelines as to what head and neck patients are entitled to by way of reconstruction. The Head and Neck Standards of Service Provision (draft 2013) state, “Patients with head and neck cancer have access to ….a range of experience rehabilitation professionals throughout the course of their cancer journey…” “Access to” does not mean they have the “right to” reconstruction. Many like myself, have been denied further access due to other factors affecting our health. Again, there are no clear guidelines.

The Standards rationale includes the following, “Early access to rehabilitation service is associated with better outcomes, and can prevent secondary disability.” Rehabilitation won’t provide better outcomes or prevent anything, if we don’t acknowledge the need for it and act. Disfigurement is a need.

Let us start the conversation. Let’s talk about who is disfigured, how, what this means for their lives, and how they are coping. We need to find out what can be done to alleviate the pain, suffering, and hurt from disfigurement. We need to properly prepare people before surgery. As one of our Network said, “If you can never kiss again, you might like to do a lot of it before surgery!” We need treatment plans that give people hope, not that they will return to their pre-cancer selves, but that they can be the best they can. 

Let’s not turn away from disfigurement. Let’s walk towards it together.

Highly Recommended Reading:

Changing Faces https://www.changingfaces.org.uk/about-us/disfigurement

References:  

Callahan, C. (2002). Facial Disfigurement and Sense of Self in Head and Neck Cancer. Social Work in Health Care. Published online: 22 Sep 2008, Pages 73-87.

http://www.tandfonline.com/doi/abs/10.1300/J010v40n02_05

More Resources

Changing Faces Self Help Guide for Adults  https://www.changingfaces.org.uk/adviceandsupport/self-help-guides/self-help-guides-adults

https://www.nhs.uk/Livewell/Facialdisfigurement/Pages/Facialdisfigurementhome.aspx

https://www.theguardian.com/careers/careers-blog/facial-disfigurement-graduate-job-seeking

E-mail me when people leave their comments –

Authored by Diana Ayling

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Comments

  • Friends of the Network
    Thank you Diana. Such a relevant article for this group. For Greg and I, the shock of the diagnosis was closely followed by surgery. We were so focussed on survival that I don't think disfigurement was ever discussed, we just quietly thought we'd deal with whatever we needed to afterwards. But perhaps that was naive. Neither of us had any much of an idea what to expect Post op and those first weeks were pretty scary and overwhelming. However in many ways Greg's disfigurement could have been much worse and he is now quite accepting of it. Though I think the facial scarring and swelling, his ability to eat, and sometimes be understood, as well as the significant hearing loss did affect his ability to be social and his confidence outside of his familiar environment.
    Again, thank you for opening the door to this discussion and allowing us a voice.
  • Ah, this brought tears to my eyes. Never,  not once, has disfigurement been mentioned to us. Apart from being advised to wear a bib over the gaping hole so that others are not upset by looking at said hole. Skinny , scrawny necks, stripped of all the usual internal structures that hold them together. Lymphoedema, that persists still some 6 years later. The dewlap too persists No advice or treatment offered. The constant coffee stain dribble that runs down both sides of the mouth. The alteration of the mouth from shifting teeth and tooth loss as well as changes in the jaw structures. Kisses? What are they? Do I even remember? (It's been 7 long years). Even the ability to smile has been taken, just a persistant sort of scowl. Speech? What is that.  Oh this disease has robbed us of much and caused so much disfigurement. I could add more. To what point?

  • Well said. Diana you are an inspiration and i think you are a beautiful person inside and outside. I can totally understand the frustration that it must be for all people with disfigurement and all I can say is as you said "Lets Not Turn Away from Disfigurement" "Lets Walk Towards It Together"

  • Well said Diana. Actually when I was at Palmerston North hospital I ran into an old school friend. Her first comment was Anne what has happened ? She knew by just looking at me that something drastic had happened & then was concerned as to could it be corrected.I am not after the perfect face cos it probably wont happen. What I do want & hopt to get from my plastic surgery is a functioning nose. Do you want a photo so you can do a before & after? Just a thought

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