“Hints & Tips for Working with Me” – An Example Guide

Depending on the organization or team in which you work, and your level of comfort in sharing your personal work style preferences, you could create a a short guide like “Hints and Tips for Working with me” to share with others. In some organizations you may find that you can share this via a link in your email signature.

Below I have shared just one example of such a guide that I used in the past in one organization. I was prompted to write this because the company culture was such that there was an expectation that employees would meet over lunch and no one realised that for me it actually made it very difficult for me to get time to eat or enjoy eating during such meetings.


Hints and Tips for Working with Me

How I look and how this impacts my communication preferences: 

Those of you who have already met me may have noticed that I look a little unusual as I have an unsymmetrical face due to facial paralysis* on one side of my face.  Colleagues who are already aware of this situation have asked how they can be of support so here are some simple things that might be useful to know when working with me: 

  • The range of movement in my face for smiling, speaking, eating and drinking is very limited and it requires more of my energy and concentration to move my face than for other people. 
  • This means that there may be times when it is easier for me to correspond over e-mail, or times when I will choose to be audible but not visible on virtual meetings. This is especially true towards the end of the day if I have been talking in a lot of meetings. It can also be more difficult for me to join virtual meetings in the middle of the night and so it helps if you can record meetings that take place at these time.
  • Due to the fact that eating requires more concentration, I prefer not to combine meals with meetings (i.e. I prefer to avoid business lunches).
  • Understand that my facial expressions may not match how I feel. Simple actions such as smiling and blinking can be difficult for me especially when tired.

If you have any questions, please don’t hesitate to ask, and feel free to share this information if you think it would help others.

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You can find out more about facial paralysis in general at these sites: 

*Facial paralysis, or facial palsy, generally refersto the weakness of the facial muscles, mainly resulting from temporary or permanent damage to the facial nerve. 
(In my case, the original cause was damage to the facial nerve due to a type of tumour that I had surgically removed in my early 20s. )

7.Developing a personal practice of running

With sport centers and gyms closed and more people needing to get creative with how they stay active, I thought I’d take this opportunity to share how I went from hating running even for just 5 minutes to developing it into something that I now do for enjoyment for over an hour.

This is another long blog, but it speaks to how many little experiments and tweaks or adjustments to small things can support you in finding a way to make exercise less like a challenge while living with facial paralysis.

It was a long process of trial and error and in the interest of sharing from my own experience, here are a few ways I found a way to reduce the discomfort or unfamiliarity when running and gradually turn into a restorative practice.

Why running?
Initially I found it difficult to go to sports centers as the facial paralysis would make me self-conscious and so although I did persist in going to sports centers, I think a pre-existing practice of running would have been a great stabilizer as I returned to the world with facial difference for the first time.

The beauty of running or jogging, especially at a quiet time of day or place is that you can really make it your own. It wasn’t until I had been running for a few years that I came across a delightful documentary podcast in the “Onbeing” library on “Running as a Spiritual Practice”. You can listen to or download it from this link:https://onbeing.org/programs/billy-mills-christina-torres-ashley-hicks-et-al-running-as-spiritual-practice-jul2017/
I’d highly recommend it as another way to help you find your own way into developing running as your own self-management and stabilizing practice

Over the years the other side benefits I found are that even when on business trips or holidays, depending on the location there is a good chance I can find somewhere to run even if there is no sports center or gym available.

I’ve also found that running helps me in reducing the anxiety and frustration that can build up due to the day-to-day challenges of living with facial paralysis. Sometimes frustration can feel like a kind of pent up energy and running is a great way to physically “burn off” this unproductive mental energy.

Steps towards creating your own personal practice of running:
1. Removing the barriers: removing unnecessary weight and reducing friction in what you wear & carry
2. Developing strategies and finding accessories to address the side-effects of facial paralysis while running
3. Listening to what engages, supports or helpfully distracts
4. Being aware that your interests and tastes will change over time
5.Coming to peace with starting small and working up longer distances over time

1. Removing the barriers: removing unnecessary weight and reducing friction in what you wear & carry
Professional running or sports stores include all sorts of recommended running-specific attire shoes and accessories, but their recommendations may not actually facilitate you finding your own way into running.

What worked for me was discovering what was creating friction or making running uncomfortable, and experimenting with alternatives until it felt like less of a burden.

  • Ways to carry your house keys or phone in a way that requires no continual adjustment
    I knew straight from the start that I just could not run with any size of rucksack. I couldn’t find a rucksack that would not sway or shift in some way while I was running and I found myself repeatedly having to stop to adjust my rucksack and t-shirt. Next,  I tried out different waist-band phone holders and unfortunately, again I found that these would start to loosen or slip and so I would have to stop repeatedly to re-adjust the fitting.
    In the end, I discovered that a phone armband worked best for me. There are different sizes – some big enough to fit your phone, some cash and keys. I also found one in which I could cram lots of tissues which is very useful if you have an eye that waters a lot when you run.

    It may be that a waistband-type phone holder or small specialist runner’s rucksack does work for you, but as each of us is different I would go in without preconceptions and just try to find what is least likely to feel like an extra weight or require repeated adjustment while running.
  • T-shirts, shorts and running wear
    I initially started running with slightly baggy t-shirts and shorts as this is what I would be most comfortable wearing in the gym. However, I discovered, especially when running in hotter weather that the baggier the t-shirt and shorts the more they would feel like an extra weight and make me too hot very quickly

    Something I learned early on is that whenever I feel like I’m carrying extra weight or when I start to feel hot that I feel this need to stop.  As a result, overtime, I’ve moved to thinner and smaller t-shirts and shorts.  Even in the winter, I still prefer to wear thin shorts and t-shirts where I can, and focus on wearing other accessories to keep warm the parts of my body that are most sensitive to the cold, such as my face and hands.

    In the professional sports shorts I see various lycra running shorts and leggings promoted, but I have found these make me feel more restricted when running and can also make me feel too hot so they haven’t worked for me.
    It is useful to understand what circumstances / feelings are most likely to make you want to stop mid-run, whether that it is a tendency to feel too hot, or too cold or certain clothings and materials that start to feel like an extra weight or increase friction. The better you can get at identifying these things, then the easier it is is to adjust and remove things that increase the reasons to stop running rather than just keep going.
  • Running shoes
    As with t-shirts and shorts, I actually found that the items promoted by sports or running shops didn’t necessarily meet my needs. I was recommended some springy soled shoes but actually find the thinnest sole of running shoe has worked best for me. In particular, because thicker-soled shoes can feel heavier and cause me to trip more often.  I also came across a type of running shoe or trainer that is made of a kind of elastic weave that allows air to flow through the fabric. I initially bought these in the summer but now find I use them all year round as give my foot the right balance of support while a bit of flexibility and stretch on the upper part of my foot

    I certainly do recommend getting advice from a professional sports shop, especially to select shoes which are least likely to cause injury, but you will still need to experiment to find the kind of running shoe that provides you with the right balance of support and comfort that you need.

    Also, if you find, like me, that an over-watering eye is a side effect of the paralysis, having a pair of trainers that you can really trust to be least likely to make you trip when you can’t always clearly see the ground ahead is crucial.

2. Developing strategies and finding accessories to address the side-effects of facial paralysis while running

  • Running with a neck warmer or “neck gaiter”* as a face mask
    Way before I started running I had been experimenting with different ways of keeping my face warm in cold and windy weather. As I am sure anyone with facial paralysis can relate to, the cold makes it even more difficult for you to move your face and make you even more self-conscious about your looks and so you want to do everything to keep your face warm.

    At first I started with thin face mask/ balaclava combinations that some skiers or motorcyclists wear. In the end I came across something called a “running neck gaiter” which I find works best for me as I can easily pull it down if  need to cool off but it can pull it right up to cover my mouth and nose to get maximum protection for my face while wearing a running hat.

    The added benefit, of course, is that from a distance people can’t see my facial paralysis and so i feel less self-conscious or worried about how my face may be moving in odd ways while running. 

    I even found  this neck gaiter useful in other situations too. For example, when I have had to travel on long flights I find putting this on my face not only stops my throat getting dry but because I am more likely to dribble when sleeping due to the paralysis it means I can take a nap without worrying how I might look to other people while I am asleep.
  • Wearing something that allows you to carry what you need to address the side effects of the facial paralysis
    Although in my day-to-day, the eye on the paralysed side of my face suffers from insufficient production of tears, when I am running for some reason my eye starts streaming. 
    It’s awful when you realise you have no tissues and are stuck with streaming eyes. For this reason I found I needed a way to carry an inordinately large amount of tissues on any run. So, now I either buy shorts with large pockets or sew inside pockets into my shorts. I also found a large armband that fits my phone but also a good bunch of clean tissues has been useful too.
  • A running cap that protects your eyes from the sun
    Due to the facial paralysis I cannot screw up the eye on one side of my face so I find that a running hat with a rim or visor is crucial on days when it is not overcast. I also found that on hotter days I want the freedom to be able to carry my hat when running. For this reason I also experimented with a flexible running hat that I can squeeze under my armband or fit in the back of my shorts when running.  This is another opportunity to find what works for you.
  • Clip on sunglasses
    I found that even while wearing a running hat with a rim to stop the sun going directly into my eyes, that I still needed sunglasses in some cases. For example, when running early in the morning, the sun can still be quite low in the sky and so I now run with clip-on sunglasses that I can actually clip on to the neckline of my t-shirt when not needed. They may not look trendy but they are light and very easy to take on and off as needed. If you don’t already wear glasses you may want to find what kind of sunglasses are easiest for you to take on and off as required and cause you the least hassle while running. Some opticians can also help cut or trim off-the-shelf clip-on running glasses to fit the shape of your existing glasses.
  • Headphones
    If you are listening to music or podcasts while running you’ll also want to find headphones that are comfortable and don’t completely block out the sound around you.

    I also suffer from partial deafness in one ear and so sounds can on occasion sound to me like they are coming from the opposite direction from which they are coming in reality. For this reason I am particularly careful about making sure that I use headphones that don’t fully block out external sounds. I also have developed the habit to stop at any crossroads  or intersections no matter how quiet the street to make sure I can visually check and not rely completely on my hearing.

    For the above reasons, I find earbuds are not suitable for me although they seem to be the most popular these days.   In my search to find a comfortable set of headphones I also discovered that my ears are actually smaller than the average persons so I had to experiment with finding a design that would reduce the weight on the top of my ears while also not falling off my ears or sliding while I run. Surprisingly I actually found that rear band headphones were the best fit for me but you may find that headphones without a rear band that sit directly on each ear separately work just as well for you.

3. Listening to what engages, supports or helpfully distracts
It is great if you find that you don’t need to listen to anything while running as this is probably by far the safest option and most healthy. However, I find I have not reached that stage yet so I need to listen to something for my brain to with while I am running.

When I first started running I found that I needed to listen to fast-paced music. In fact the reason I started listening to anything at all was because I realised that the more I could hear my breathing,  and how intense my breathing was as I was running, it had a tendency to make me feel like my body was more tired than it was in reality. In this way the music was a way to distract me from hearing my own increasingly labored breathing while setting a pace for my running.

However,  a few years ago I became more aware of the wealth of podcasts available and now find that podcasts are my favoured companion when I run.
Ones that I used to initially related to my personal interest in health like BBC Radio 4’s “All In The Mind”, “Inside Health” or “Health Check” but since then I’ve found a wide range of podcasts on topics that relate to my other areas of interest and even delve quite deeply into my own area of work, and so each week I download a variety so that I can choose the kind of topic that feels of interest on that day. 
On some days I want to just go with something light and fun, and on others I feel like more interested in more specialist or deep content and so having the flexibility to select a podcast based on my mood for that day helps me finish my daily run even on days when I am feeling more tired or less motivated.

And of course it’s a great added bonus to go on a run and by the end of it feel like you’ve learned something new!

4. Being aware that your interests and tastes will change over time
As with my description above in relation to how my interest in what I listen to over time has changed, it’s worth keeping in mind that just because you find something that works for you today,  you may find in the future it no longer becomes your preference or best fit.

For example, for now I prefer to run alone as I can adjust my pace and distance as and when I like, but I can see a time in the future when I might prefer to run with others or even try a park run type event.

5. Coming to peace with starting small and working up longer distances over time
Being kind to myself, and accepting that starting small is fine, has also been one reason that I’ve been able to go from hating running to now finding it an essential part of my weekly routine.  I started off with just 5 to 10 minutes and  allowed myself to stop to walk or slow down as and when needed. I gradually built up so that now I can run for 2 hours – still with multiple pauses to blow my nose due to the streaming eye on one side of my face though 🙁
As I look back I would not have imagined myself as someone who could run for 30 minutes let alone 2 hours but I think self forgiveness, being patience and finding satisfaction in small steps forward has been crucial to getting where I am today.

All this detail and preparation may make you think “why bother” but once you find out what works for you then the preparation becomes second nature and you find less time is required to prepare over time.
Especially in these times of COVID19 when most sports centers are closed and when there might only be one opportunity to get out during the day, running can be one of the best “medicines” for helping you stay physically well and mentally balanced.

As always, I share tactics and strategies that I’ve built up over time but I’d love to hear from others how they have turned exercise or running into a practice that sustains and provides enjoyment from something that once felt like a burden or obligation.

*Just in case you are not familiar with these kinds of running neck warmer/bandana/face mask accessories, you can find examples by searching for “running neck gaiter” images on the web. You may also see more people wearing these in your neighbourhood recently if you are living in a place in which people are “sheltering in place” or working from home but are allowed to go out running  once a dayand want to be able to wear something that  has some of the functions of a facemask albeit in a limited way.

6. Facial difference and virtual meeting technology

As so many of us are now working from home as a result of physical distancing and “shelter at home” requirements, I thought it might be a good time to share my experience of working with others virtually via online tools in which our face will be visible.

Several years ago I was in the lucky (or unlucky!) situation of taking on an exciting role for the first time in which there was no one in my work team in the same country as me. This meant, whether it was for 1:1 meetings or team meetings, I was suddenly put in a work environment in which I had to dial in using virtual meeting technology for over half of my interactions. 

Prior to taking on the new role, channels for interaction were much the same and manageable :
For 1:1 interactions, such as my coaching sessions for individuals in other countries,  I still had the option to just use a phone or voice-only format. In fact, the phone was still the most common form of interacting with people not in the same office.

For in-person team work,  I mostly had the luxury of seeing people in person and being able to take advantage of aspects of the physical environment to shape how others perceived me.
For example, for in-person meetings, I had developed a strategy to reduce focus on the paralysed side of my face by arriving early so that I could get the seat at the table at which I would be able to show the “normal” side of my face to most of the room (e.g. in my case it would be the seat on the most right most side of a table so that as many people as possible would be sitting on my left and would see the left side of my face (which is the unaffected side of my face).

Below I share the stages I went through as I adjusted to using virtual meeting technology for the first time and hints & tips I was able to pick up along the way.

Adjusting to being seen via virtual meeting technology

Stage 1: Initial resistance to the new context 

In my first week in my new role, as I realised that almost all of my most important and regular interactions were going to be on virtual meeting technology, I felt an intense feeling of dread.  I was now going to be appearing on a screen, in most cases only my face would be visible, and I would have no control as to how I was appearing to the viewer. I found out that some meeting rooms in other offices could be huge and so my face might end up showing up on a screen the height of a wall 😱

My initial strategy was to resist and limit the technology as a protection. I would switch off the video so that only my voice could be heard, I’d try to sit on the edge of the screen so that the paralysed side of my face wasn’t visible or I’d even try to choose a large meeting room and sit so far back that my head would be tiny on the screen and try to make sure that the video camera was not zoomed in at all.

However, I quickly learned how these approaches were actually undermining my image and reputation rather than improving them.  I’d never met the individuals in person as I was new to the team, so they were immediately confused or suspicious when I consistently turned my camera off. My attempts to hide or obscure my face made me seem unapproachable and less trustworthy just at a time when I needed to quickly develop trust.  I started to get more comments about not being seen as engaged in meetings and found that I was creating my own obstacles in interactions, especially as the act of “unmuting” on a conference call would require me being closer to the screen and so it would always take me longer to get to the “unmute” button, by which time someone else had already gotten ahead of me and started asking their question.

Stage 2: Acceptance instead of  resistance: “Shikata ga nai”

After 2-3 weeks of waking up with the daily dread of  interactions ahead via a screen, I had a kind of “aha” moment: I realised that instead of investing my limited energy resources in resisting a technology that ultimately I couldn’t change or influence to the extent I wanted, I could instead choose to apply my energy and attention to work with the technology as a new experiment to find new ways to connect and develop trust.

I’ve spent a lot of my working life in Japanese-speaking and Japanese cultural contexts.   I’d always marvelled at the difference between attitudes on rush hour trains in Tokyo versus in London. In London there would generally be more animosity, pushing and swearing,  while in Tokyo people would board quietly and without resentment regardless of how cramped the conditions. This attitude of acceptance or resignation, especially in situations in which resistance is not going to improve the immediate situation, is called  “shikata ga nai” or “sho ga nai” in Japanese.    It literally means “there is no way” or “nothing can be done about it”

So it was this concept of “shikata ga nai” that helped me as I changed my attitude and approach to my interaction with and use of the technology which was going to be an essential part of my personal interactions at work whether I liked it or not.

Stage 3:   Practical actions for drawing attention in different directions

Over the years I’ve experimented with different approaches to getting the most out of technology such that my facial difference doesn’t get in the way of me developing relationships.

Draw attention towards the side of your face without paralysis

  • Using your environment to your best advantage:
    • If sitting in a room near a window, try to sit so that the window or lighting falls on your non-paralaysed side
    • Arrange a colourful or interesting picture or wall hanging positioned so it is behind you on the non-paralysed side of your face so that it draws attention to that side of your face.
  • Test out microphones so that your voice can be clearly heard:
    It may seem obvious but it is even more important that your voice is clearly heard as otherwise people will be even more likely to look for visual cues.  
  • Don’t touch the side with the paralysis: I had a habit of trying to lift up the paralysed side of my face until a friend told me this actually made them look at my paralysed side more and also made it look like I was fidgeting.
  • Here are some other tips, some of which I’ve picked up from resources on facial difference and facial paralysis on drawing attention to one side more than the other:
    • Hair: arrange your parting so that more of your hair is on the non-paralysed side of your face
    • Clothing: put a broach on the same side as the non-paralysed side of your face.
    • Make-up: regardless of whether you are meeting in person or via GVC, there are some ways you can use make-up to reduce asymmetry. There are several specialists in this area but just as a starting reference I found that  in Lindens Clinic was able to introduce me to a specialist who could give me advice based on my unique circumstances.
  • As my smile often isn’t read as a smile I noticed other things I can do to create trust and warmth. For example, when taking meetings from home my cat can be visible – I noticed that my cat appearing on the screen not only helped me relax but brought a sense of fun and ease to meetings. 

Taking stock and taking advantage of untapped parts of your style and personality

Voice as part of your character
Until I had to deal with facial paralysis, I had not thought much about my voice, but it turns out that my accent happens to be an accent that has a lot of positive associations for others.  So, I’ve had to learn to slow down and refer to my accent in self introductions as a way to help people focus on aspects other than my appearance.

Voice as a tool to connect
Due to the facial paralysis, my dislike for speaking on stage and in public which I had as a child grew into a much greater fear and I found that any context in which more than 2 or 3 people were watching me caused me considerable anxiety.
In order to address this I decided to join a local  “Toastmasters” club which at the time was an organization for people interested in improving their skills in public speaking.  Through this club I learned about other aspects of voice that I was failing to take advantage of such as pitch, rhythm, speed, volume, etc. and discovered that some of these aspects of voice were easy for me to pick up and apply.
I am not suggesting that everyone should join a club for public speaking, but you may find there are aspects of or techniques in how you use your voice that you could bring to the fore as a way to reduce reliance on visual cues and appearance.

Personality and fun
After living with facial paralysis for several years I started to notice that, when with close friends and in situations in which I was relaxed, people would often comment on how much fun I could bring to a conversation.  Making jokes is something I had avoided because it made me laugh, which of course made my facial paralysis and asymmetry even more noticable. However, I realised that by restricting myself in this way I was actually neglecting an important aspect, not just of my identity but of my personality that could take more advantage of to help people see beyond first appearances.  

Since taking this insight from others on board I’ve tried to be more intentional about bringing more fun into interactions and it’s also made me aware of even simple things we can do to bring a sense of fun and reduce the focus on our face. I recall one example from a colleague who was on a team in which she was the only one who was not in the same office location. She said that often people would start to forget that she was on the dial-in screen during discussions and gradually become more and more focused on only those in the same room. As a result, she decided to start to wear different funny hats to each meeting as a way to create a stronger impression so that the team would be less likely to forget to include her in discussions in the moment.

This might seem overly simplistic, but it is worth thinking about what aspects of your personality you could be forgetting to bring to interactions that might help you in reducing the focus on your physical facial appearance.

Finding the right approach for you and crowd-sourcing more ideas
I do not suggest that everyone should only use the visual/video option when using meeting technology as we are all in different situations dealing with different challenges. However, I share some of my own experience in adjusting to the reliance on virtual meeting technology in the hope that it can be of help in some small way for anyone learning to navigate new channels for communication as a result of working from home and working in different physical locations for the first time.

I also realise that my strategies are just a small set of options and so would love to learn from others. What have you learned and what would you suggest to help people with facial paralysis and facial difference get the most out of working with virtual meeting technology?
What other resources have you come across that would be useful to others?

5. Addressing the elephant in the room

In my day job I am an organisational development specialist. Development at an individual, team and organizational level often comes down to change and it is for this reason that I’ve become particularly interested in behavioural economics and how you can construct “nudges” to facilitate a certain change in behavior.

One of the experts in this field is Dan Ariely and he gave a talk at a conference on behavioural economics called “Behavioural Exchange 2019”.  
He starts his presentation talking about his appearance which looks unusual due to the fact that the right side of his face is scarred from being burned as a child. He manages to keep the explanation short and uses humor effectively to inform without distracting from the main purpose of his presentation. (You can see a recording of his presentation including the introduction here: https://youtu.be/Opjq1JT_dS8?t=90 )

When getting back to the day-to-day, after being left with facial paralysis, my initial tendency was not to talk about my appearance because I was so worried that it would draw attention away from the topic that I wanted to share or present, and also for fear of people focusing on my appearance rather than on the content of what I was saying.

However, I have found that when I am among people who are not used to seeing facial difference that they are drawing assumptions anyway or can be distracted precisely because the are wondering why I look different –  in some ways, I’m maintaining a state of distraction in the listener or audience precisely because I’m not addressing the “elephant in the room”: In the absence of information people don’t stop making assumptions, they just connect the dots in their own way and make up their own stories as to what might be the cause of your difference in appearance.

In some ways a presentation on stage can make it easier to directly address something like this right from the beginning, but depending on the culture or situation it isn’t always easy to find the right timing to explain why you look different.  In these situations we need to get creative and so that is where other approaches like creating a link in your email signature to a “Useful things to know about me” explanation, which I mentioned here in my second blog (“Managing your day-to-day for yourself and for others around you”), can be helpful

It takes time to find your own preferred style and approach to address the unspoken questions or assumptions in the room,  but I think Dan Ariely’s introduction is one good example.  
What approaches have you developed that you have found helpful and in what situations? 

4. Advice for anyone who wants to know how to be of support to individuals with facial difference

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.

3. Staying on an even keel physically and mentally

In my last blog I focused on practical actions you can take to make your day-to-day less of a strain by experimenting to find what works for you and proactively helping others know your preferences.

In this blog I also share some practical hints and tips but focus on how to stay on an even keel physically and mentally from a longer term view:

Physical health:

  • Don’t take your eye off the ball on regular health checks
  • Keep active but not just for the usual reasons

Mental health:

  • Avoid media and messages about superficial facial or cosmetic issues
  • Maintain or explore a hobby that reminds you of what you can do (and not what you cannot)


On reflection these points can seem obvious but it is precisely when your energy reserves are focused on dealing with a significant health issue, like facial paralysis, that it is easy to lose sight of the bigger picture and forget to take the initiative to keep your health on an even keel not just for that day but the longer term.  

Especially if you are in a country in which the medical support services, whether for physical or mental health, are not joined up it is down to you to make sure that you keep up regular health check-ups and personal practices.  It can feel unfair and another extra task but in the long-run you’ll benefit tenfold.

Physical health:

  • Don’t take your eye off the ball on regular health checks
    It is easy to let yourself just focus on seeing specialists relating to your facial difference (e.g. Ear, Nose and Throat , etc.) but it is important to remember that any facial paralysis will have secondary impacts which means it is more important than ever to keep going to regular check-ups with your dentist and optician. 

    If you have difficulty closing your eye, having regular visits to an optician or eye clinic  is critical as they can make sure you get the right eye drops or gels and advice to help keep the surface of your eye from being damaged. 
    Regular visits to the dentist also become even more important as you may find that the paralysis effects your teeth over time.

    At first, especially if you are going to a new optician or dentist, it can feel uncomfortable as it draws attention to the paralysis just at a time when you want to feel as normal as possible, but having advice from specialists is critical to avoid further health complications over time.

  • Keep active but not just for the usual reasons
    Physical exercise is important for anyone in staying fit, but the effects of not keeping physically fit and managing your weight come with extra challenges with facial paralysis. There are do doubt individual differences but in my case I found that when I did less exercise that I would put on weight not just on my body but also on my face. And, every time this happened it would, in turn, make it difficult for me to use the already limited movement in my face.

    So, although your first reaction can be to avoid going outside or to the gym, don’t forget that reducing exercise can compound any limitations that you may be experiencing as a result of your condition.

Mental health:

  • Avoid media and messages about superficial facial or cosmetic issues
    In my case, facial paralysis resulted from surgery to remove a growth from the facial nerve.   This meant spending a few weeks at home recovering and the inevitable time with day-time television.  Day-time television at that time included chat shows which could include topics such as people wanting plastic surgery for cosmetic reasons.

    The was about the worst thing I could watch as it just made me feel more anger, frustration and resentment that people could be complaining about their looks when they had full facial functionality while I was dealing with a loss of nerve function.

    There’s a lot of “dross”in the media which is the worst thing to watch if you want to keep a positive outlook and so, where possible, try to think ahead about how you can limit your exposure to such content whether on the media, internet or in newspapers or magazines

  • Maintain or explore one hobby that reminds you of what you can do (and not what you cannot)
    Our face is inextricably linked to our identity and regaining confidence in your own identity when you look different takes time. Again, especially if you have facial paralysis as a result of surgery or some trauma that prevents you from immediately returning to work or studies, it can be a huge help if you can keep up or find a hobby that helps engage you in learning and mastery of some skills.

    It can seem like a comparatively small act, but just at a time when strangers around you may make unfounded judgements about you based on your different looks, the more you can do to ground yourself in skill or knowledge building for yourself, the more it will help you in building your muscle of resilience in your day-to-day interactions with others.

    It will be there to remind you what you CAN do and the value that you DO bring to dispel your fears of what you may feel you cannot do as a result of the facial paralysis or facial difference.

In this blog I focused on a further set of practices and actions you can take to look after yourself and keep on an even keel physically and mentally. In the next blog I’ll switch from the perspective of individuals living with facial paralysis or facial differences to those people who want advice on how to support individuals dealing with facial difference.

2. Managing your day-to-day for yourself and for others around you

In my last blog on learning to live with facial difference I talked about the importance of being ready to handle the reactions from others who are not used to talking about facial difference. 

In this blog I focus on what I wish I had known would be important on a practical both to help me better handle the day-to-day obstacles of facial difference and to help manage others expectations too. The examples below deal more specifically with facial paralysis but I also hope there will be useful takeaways for others dealing with other types of facial difference:

  • Managing your day-to-day by experimenting with what works best for you: Experiment to find implements and tools that make eating, drinking and sleeping easier
  • Managing others expectations by using multiple communication methods: to enable others to understand your understand your preferences and limitations think about what channels for communication there might be available to you

These points relate to reducing the obstacles on a day-to-day level including those things that you can do yourself as well as helping making your life easier by managing expectations of those around you:

  • Managing your day-to-day by experimenting with what works best for you:
    Depending on your type of facial paralysis, it can result in reduced function of muscles around your mouth which means a lot more concentration is required to eat and drink without spilling or dropping food.

    I found early on that certain type of cups and eating utensils were much  more difficult for me to use and, as a result, eating and drinking with people other than close family and friends could be quite stressful. However, by experimenting with different designs of cups and types of eating utensils  I was able to find a way to reduce the effort required. For example, I found that very thin-edged porcelain cups were the easiest for me to drink from without spilling. I’ve heard that some people prefer straws but for me I’ve actually found I spill more using a straw and so my advice would be to experiment yourself to find out what works best for you. 

    I also discovered that large spoons such as soup spoons were a challenge and now use tablespoons or dessert spoons instead.  At first I used to be embarrassed to ask for a different spoon when eating out a restaurants, but now it is something that even my friends ask for me on my behalf because they are so used to it.

    If one of your eyes doesn’t close properly, then you’ll most likely have been recommended some eye gels and tapes to keep your eye closed while asleep. There are multiple eye gels and different types of tapes and patches and so different combinations that work better for some people than others.

    It can be frustrating to have to spend time to try out different options and combinations,  and it can feel like yet another extra task just at a time when you already feel your energy resources are limited .However, persisting with different combinations and getting to understand your own preferences makes a huge difference to reducing the energy required in daily activities and keep up your energy levels throughout the day. 

    Support organizations, such as Facial Palsy UK, provide detailed guides (like this: https://www.facialpalsy.org.uk/support/patient-guides/)  which help you find out more about the different range of options and approaches.

  • Managing others expectations by using multiple communication methods:
    One of the toughest things for me earlier on in my career was finding a good time to let new colleagues know why I looked different. And, later on in my career, I also worked in an organization where the culture was such that the expectation was that there would be regular informal or formal meetings over lunch or dinner. I didn’t want to come across as antisocial or unfriendly but I dreaded meetings over mealtimes as I needed to use even more energy to be able to carry on a conversation over a meal.

    Sometimes it is not difficult to tell people directly about your facial differences and preferences, but sometimes it is difficult to find just the right timing to let people know.
    In these situations I found having a link on my e-mail signature really helpful. This means that in addition to your contact details or work title  you add a link to a “Useful things to know about me” or “Hints & Tips for working with me” document in the standard signature text at the end of your e-mail.

    Sharing information in this way takes the pressure off you having to verbally tell each person every time you meet them for the first time and content of the linked document itself can be as simple as a short paragraph or a few bullet points  summarising the cause of your facial difference and why you look different (especially useful when your facial paralysis means that usual facial expressions such as smiling is difficult) and also your preferences such as avoiding meeting taking place over lunch.

    E-mail signatures are just one communication channel that you can use, but maybe there are other channels you could wherever you work or study.   What other approaches have you found useful?

In this blog, I touched on a couple of practical approaches to managing yourself and the expectations of others. In my next blog, I’ll be sharing more about the longer-term and useful things I’ve learned on keeping an even keel both in terms of physical and mental health.

1. Keep calm and carry on – when others don’t know how to respond

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.