When a Face Changes: Living with Permanent Facial Paralysis

This blog is not going to go into my journey of how I acquired permanent facial paralysis on the right side of my face. Suffice to say it was related to tongue cancer radiotherapy treatment, five years post-treatment, with a slow onset over a period of 24 months. My nerve was cut for biopsy in an exploratory operation at the point I was already a 5/6 on the House-Brackmann facial movement scale.

I’m writing this to raise awareness of what is both a physical and emotional disability that negatively affects relationships, work opportunities, and mental health, but is often overlooked as being less serious than other disabilities because we can still walk and talk (although even this can be compromised).

Well, honestly — it sucks. It really does.

It impacts identity and self-esteem immediately, and the effect on mood and mental health can be considerable and long-term. Physically, there is no control over eye closure in blinking, squinting, or during sleep, with a risk to sight. There is a lack of control over cheek and lip movement for eating, drinking, and talking, and — often overlooked — a collapsed nasal passage.

This disability is especially challenging because it directly impacts communication. Your face is the first non-verbal cue anyone sees whether they know you or not. An unexpected face often invites a second or prolonged look from strangers, who in that moment may be slightly taken aback by a face that does not follow the usual pattern of symmetry. Facial symmetry is something we begin to recognise from the earliest stages of life, and over time we learn to read the emotional patterns faces express. This ability gives us the sensitive and nuanced interactions that are necessary in being emotionally and social intelligent.

What we lose immediately as sufferers of this condition, is the ability to create the facial expressions others instinctively recognise, nor can we produce in the most subtle of ways the very important micro-expressions of a slight eyebrow raise to a nose wrinkle, or a lip held in tension.

This is frustrating for the person with the condition, as we can no longer use an expression — or a ‘look’ — to communicate subtly. Instead, we must rely on words more carefully to make our meaning clear. For the receiver, the usual emotional cues are missing, and they may find it harder to fully understand how we are feeling. If you meet someone with facial paralysis, know that their emotional world is intact, even if their face cannot express it in the way you expect.

As a psychotherapist who has worked in mental health for many years, I at least had some tools to fall back on to help me manage this intense challenge. That has helped me make choices that support rather than hinder me. But — and this is a big “but” — I have still found this the most difficult challenge of my life, despite losing parents, having miscarriages, and even having cancer. I have immense gratitude for surviving cancer, but I have been desperately sad about losing the most communicative part of me — and my perfectly acceptable ‘looks’. Nothing grand before, just me. Just acceptable.

My face is naturally a big part of a job that requires emotional expression, and I have been waiting through the healing and adjustment process that has followed my fallen face to see what might emerge.   There has been loss — loss of part of me, loss of work and income, loss of career opportunities. It is a grieving process that takes time and moves through different cycles.

What we must do is allow these emotions without locking or blocking them. We must find ways to express and manage thoughts and feelings with self-compassion, allowing the cycle of grief to move forward and gradually transform into something that strengthens our internal world — our sense of self, our self-esteem, our worth, and what we can still offer the world.

So, I have decided that I will continue in the therapy world. Whether that means supporting those who have endured this condition or other long-term health challenges, or helping others find their resilience and grit, their meaning and purpose — to get their mojo back and keep living fully — I know this: you can still make a difference. Even when a face changes, purpose does not.