Over the years I’ve been asked by friends and colleagues on things they could do to support me and so I’ve summarized the top two things that I think make the most difference. My first blog (“Keep calm and carry on – when others don’t know how to respond”) provides a good summary of “dos and don’ts” on how to respond. I provide an additional two points below which I’ve experienced on multiple occasions and are responses which were not, in any way, meant with ill intent, but can unintentionally leave a person with facial difference feeling unheard or unsupported:
- Remember the cause of the facial difference
I am absolutely fine with people asking me about the cause of my facial paralysis but what is tough when I have told someone on more than one occasion and, not only do they forget, but they come up with their own reason.
My case might be unusual, but as I studied and taught self defense for many years I find that people often jump to the conclusion that it was caused due to a sports injury. However, in my case the facial paralysis was actually due to the removal of a growth on my facial nerve and had nothing to do with my interest in self-defense or any sports injury.
I have one friend, with whom over the last few years, I have explained the cause on more than one occasion and yet each time they forget and introduce me to others as having suffered facial paralysis due to a sports injury.
Although it can seem minor to others this kind of lack of thought and attention to remember what you have been told can be very hurtful.
In fact, I have an old friend who had a much more serious medical condition and she also had to deal with a similar situation. She had been diagnosed with terminal cancer and after receiving multiple medical opinions it was clear that her medical treatment was about prolonging the length and quality of her life as much as possible as there was no cure available.
She told all her friends that she had terminal cancer and that there was no cure so that they were completely aware of her situation. She continued to work and even while undergoing various chemotherapy treatments was able to continue with work while periodically taking the odd week off here and there. In fact even when she suffered severe hair loss due to the chemotherapy she found fun in the opportunity to try out different wigs which looked just like natural hair.
However, she said that because she didn’t “look” like someone with terminal cancer that after a few months, she would get asked “So does this mean that your cancer is cured?”
In the end, she said she found it so tedious having to tell the same people again that she had terminal cancer, that she would on occasionally lie and tell them she was cured just so that she could avoid wasting time.
I can’t even begin to imagine what this must have felt like.
So whether it is a minor or more serious condition, take the time to really listen and remember the cause of the condition. It sounds like a small thing, but it makes a big difference in demonstrating your support for people dealing with facial difference. - Make sure you are not shutting down the conversation
In my first blog, “Keep calm and carry on – when others don’t know how to respond”) I touch on several reactions that can create added stress to individuals dealing with facial difference. In particular, I talk about reactions where a person denies seeing the facial difference altogether, or reaction with a superficial “I’m sure you’ll recover soon”.
Both these reactions are problematic because they essentially shut down the conversation. If you deny seeing the facial difference, or come up with a blanket conclusion on their health situation, then you make the other person feel like you are avoiding the topic altogether.
The best way you can support others is to let them have some freedom with the conversation and keep it open to allow them to keep sharing if they so choose. Some people may want to change topics, but they also want to know that you will be there to listen if they do want to talk further about the facial difference. Asking open questions or just providing some silence without rushing to respond is a great way to be a supportive listener.
You don’t have to put pressure on yourself to have the perfect answer or feel that you need to fix the person’s problem and make everything “OK”. You can just be there as a caring listener who is there to support and learn.
In fact, this type of “listening to learn” is useful in all sorts of situations and if you want to find out more about about the difference between “listening to learn” and other types of listening there is a great 4-minute video by Jennifer Garvey-Berger here: https://www.youtube.com/watch?v=Zrg_3KlAE6o
I hesitated about writing this particular blog as I didn’t want to write something that could be viewed as critical or complaining of others: When you meet or work with someone with facial difference for the first time it is completely understandable that you may not know how to react. So please see the intent of this blog to provide useful advice and not to reprimand or castigate you for saying or doing the wrong thing.