By Jocelyn Cunningham
I am a wife, mother, interpreter, athlete, musician, and more – I also have atypical trigeminal neuralgia (ATN).
It all started three years ago with a “simple” dental filling that left me with debilitating pain on the left side of my face.
The type of pain where it feels like a blow torch is on your face and you have an ear infection, or the kind of pain that feels like someone is cutting your gums with a knife and sending electrical bolts from your ear down your jaw, cheek and eye.
It is a constant pain that never leaves.
The pain is often triggered by simple things like touching your face lightly, brushing your teeth, or even just stepping out into the wind.
Trigeminal neuralgia is considered to be one of the most painful conditions you can experience and the “atypical” form of the disorder (ATN), is characterized by constant aching, burning, stabbing pain.
The intensity can be physically and mentally incapacitating.
Most people with TN cannot work or carry on with normal life activities, because the pain and medication's side effects become so overwhelming.
The pain, lack of awareness and lack of a cure often lead to depression and hopelessness, which is why TN is dubbed “the suicide disease.”
This is TN and this is my new normal.
People look at me and think, “She looks fine,” but TN is an invisible illness/disability.
I often encounter medical staff that do not know about TN or tell me that it’s all in my head.
Sometimes I think it would be easier to have outward signs and symptoms so that people could recognize the pain.
This is why I sought out support groups on Facebook and connected with other people like me – we encourage each other to keep going, to not give up.
We find out who the good doctors are, which medications work well, what side effects we may encounter and alternative options for managing pain. We are a community.
TN has turned my world upside down and I am not the person I once was before. I have had to give up many things including sports, cutting my hair short when it touching my face became a trigger and not being able to go outside to play with my kids often.
Simple pleasures such as having a fan on in the summer or driving with my window down brings on pain.
It can all be overwhelming at times, but the most important things are my faith, family, work and connecting with others who are on a similar journey. It’s why I get out of bed everyday and keep putting one foot in front of another.
Through my three years, I have learned the best patient advocate is you. We all have to be empowered to take control of our health and not be ashamed to ask for a second or third opinion.
I am so blessed to have a family that supports me, to have something to believe in, to be able to work with a wonderful community whom I am committed to, and to have access through technology to others like me.
We hang onto the hope that one day there will be a cure made possible through awareness and research.
I may have ATN, but it does not have me.
For more information or if you wish to support research for a cure please visit www.tnac.org.
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