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.