Young Patient Profile
Name: Emmy Macnicol
How old are you? 29
Where do you live? Scottish Highlands
When did you first experience neuralgia? I first experienced geniculate neuralgia at the age of 12 when playing school hockey, which progressed to include GPN at age 14.
What is/are your diagnosis? I have a rare form of a genetic condition- Ehlers Danlos Syndrome and Chiari which doctors wonder whether it has caused the compressions resulting in neuralgia. Geniculate neuralgia and vagoglossopharyngeal are the facial pains I battle. Most recently TN started on my other side.
What do you do day to day?
Day to day, I am an undergrad student studying for my degree in cellular biology, with an avid interest in virology and genomics. I’m just a geek at heart! Aside from studying, being a board member for the YPC is very dear to my heart, and I am truly dedicated to helping the community. I count myself as extremely blessed to be a part of the YPC committee and will continue to strive to serve our fellow warriors!
What do you do in your free time? In my free time, reading is one of my favourite hobbies…I am a true bibliophile! Any book related chat wanted? Come to me! After my stroke, I had to alter my hobbies as i was an avid clarsach (traditional harp) player, cyclist and walker but now I love puzzles, baking, board games, listening to podcasts and speaking with my friends, wherever they may be in the world (I find the time differences can help when painsomnia hits!). Writing letters to those who are chronically ill and spending time with animals is something I enjoy very much too.
What has facial pain taught you?
Neuralgia has taught me that “nothing is impossible, for the word itself says I’m possible”. It was hard to adapt to this way of life and navigating education whilst being ‘different’ from my peers, but I learnt to enjoy and value the small things so much more, which gives me a more grateful approach to life.
Being bullied through school as a result of being sick taught me the value and power of true friends, those who stood by me are the ones who truly matter. I am blessed to have a non-judgemental personality, living life with an invisible illness taught me this quickly. Just because we may look okay, does not mean we are and so I see life through the perspective that everyone has a story. It helped me to forgive my bullies and all the judgemental people I have crossed paths with. Facial pain has taught me invaluable lessons that no school, no level of science could ever teach me.
What non-surgical procedures have you tried?
I have tried an array of non-surgical procedures; medications too many to count, nerve blocks, acupuncture, homeopathy, reflexology, reiki, psychology, tens therapy and radio-frequency lesioning.
Have you had any surgical procedures?
I have had microvascular decompression for vagus and glossopharyngeal nerves in 2016. But the UK has never performed surgery on GN so I’m now deemed palliative without seeing a specialist in the US.
How has your facial pain changed you?
Facial pain has changed me in so many ways. I had to grow up a lot quicker than my peers and learn to advocate for myself at a really young age, but I see this as a valuable achievement. Although I have forgotten what it is like to be truly pain free because I have now lived longer with GN/GPN than I have without, I do not wish my diagnosis never happened for it has made me the person I am today. Because of my journey, my goal in life is to help others and bring a little sparkle. Having facial pain has blessed me with some of the strongest, truest and most powerful friendships. A family of choice. And this is something I would never change for the world. I am eternally grateful for the people I have met and will cherish forever.
What tips do you have for other young patients?
I think that to have facial pain, no matter which type and no matter at what age, can be incredibly tough, isolating and scary. But there is always hope. A positive mindset is vital I believe to journey through life and all that we have to deal with along the way. I am very shy by nature and it has made advocating for myself tough, but you are worthy of being heard and treated with kindness and respect. Please do not beat yourself up for not being where you want to be at any moment in time. Allow yourself to feel and grieve. It IS okay to not be sparkly all the time, it is tough and exhausting living with this and every day isn’t good, but there is something good in every day. Please reach out if you are struggling. Keep doing the things you enjoy, it doesn’t matter how seemingly small. But it is so important to have things you like and that bring you happiness. For me, when my body is malfunctioning, I read because reading allows me to travel to far off distant places and times, to live a thousand lives. Podcasts are a great source of distraction too!
My motto in life is “Have courage and be kind”. After my stroke these words mean more than ever. The world is a better place when we treat one another and ourselves with kindness. Navigating pain and illness with courage keeps generating hope, and hope, hope always prevails. You are worthy. You matter. You are strong. Strong beyond measure. You are literally made of stardust and the world needs you.
