This is my first blog on facial difference and my own experience of living with facial paralysis.
One reason I have decided to write now is having seen the recent Petition to “Encourage greater awareness of the impact of facial palsy in the UK” (https://petition.parliament.uk/petitions/242864)
When my journey with facial paralysis started there were few resources and no self-help communities and so I had to pick up information and create strategies myself along the way.
There are many things I wish I had been told at the time that would have prevented extra problems happening for me down the line and so my hope is that in sharing my experience it will help others dealing with similar situations for the first time – whether that is facial paralysis or other types of facial difference.
It was over 20 years ago when I discovered that I needed to have surgery to remove a cholesteatoma from my facial nerve. I went under the anaesthetic just a normal 2nd year university student with an unremarkable life and woke up with paralysis on the right side of my face and, literally overnight, becoming the only person in my day-to-day life who didn’t look “normal”.
I was ill-equipped to deal with the loss of normal facial expressions and movement in my face that I had previously taken for granted. And had to handle the fact that society and my friends and family around me were also not prepared.
In this blog, I plan to cover practical topics on strategies for one’s own health management – both physical and mental/spiritual; however, I think the challenge that I was least prepared for was the struggle for those around me not knowing how to respond.
Here are just a few of the responses that I have had to handle:
- Not seeing: Denying they see the facial difference:“I don’t see anything”
- Not acknowledging: Avoiding the present situation: “I’m sure you’ll recover soon”
- Not communicating:Stopping contact with you or not communicating with you at all
On bad days I would blame others – “how could they say that?”, “how could they be so insensitive!” and wallow in a pool of resentment of the extra burden of having to deal with others’ inappropriate responses on top of the day-to-day challenges of living with facial paralysis.
This is NOT a good place to be in and, in the worst case, can cause you to cut off communications just when you need to be in touch with your community the most.
However, these responses make complete sense if you are someone who has never met anyone with facial difference and is trying to help with the best of intentions.
- Denying they see the facial difference:“I don’t see anything”
The other person is trying to make you feel “normal” and be supportive but they don’t know that in denying a fact about your reality that they are also shutting down a conversation. For me, I wanted to feel that it was safe to talk about my facial paralysis but in this one comment I felt shut down. - Avoiding the present situation: “I’m sure you’ll recover soon”
The cause of my facial paralysis is quite unusual in that it was caused by a direct trauma to the nerve and after several years with little recovery it was clear that I was not going to regain full movement in my face. But, regardless of whether you have temporary or permanent facial paralysis, you want those you interact with to accept you.
The other person was trying to bring a positive outlook to the conversation but, for me, this comment made me feel like they were not acknowledging me as a good friend or colleague with the facial paralysis. It felt conditional as those they wanted the facial paralysis to be resolved and out of the way so that things could get back to normal.
The other aspect of this response which was a negative trigger for me was that it sounded like someone making an opinion on something they were not qualified to comment on. After all, as they were not a medical expert in the field relating to facial paralysis, how exactly were they positioned to know I would recover quickly!? - Stopping Contact with you
This is the one that was most difficult to handle. When I came out of hospital after surgery I found that some friends I had been in touch with regularly stopped contacting me. Precisely at the time when I wanted to talk with others and also maintain friendships, I found myself becoming increasingly isolated.
Again, I know that the lack of communication from some friends was because they were so worried that they would say the wrong thing that they wavered on what to say for so long that time passed and then it seemed too late to reach out at all.
Taking a moment to stand in the shoes of those who respond in the ways above and creating space for some empathy for the struggle that your change in difference can create for them keeps you in a much better state of mind.
In the act of starting to write a blog, I also hope it might be the start of a conversation and a way to create a repository of useful hints and tips to supplement the useful resources already provided by organizations such as FacialPalsy.org, ChangingFaces.org.uk and FaceEqualityInternational.org
If you are living with facial paralysis, what kind of reactions have you had to deal with and what strategies have you created to help you keep your balance?
(And, for full disclosure. It is also true to say that my hope in writing this blog is that those who are living or working with people who have facial paralysis might find some useful hints and tips here too!)
In my next blog I’ll be looking at the more practical aspects of managing day-to-day tasks and helping manage expectations of those around you.