Month: September 2019

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.

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.

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.

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.