Invisible

Editor's note:
An entry from our first Guest Blogger.

You can request to become a guest blogger as well by emailing your blog entry to mytnpain@gmail.com for approval. Be sure to include your name (or let me know if you want to use a nickmane or remain anonymous) and city/state/country.
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It's there, but no one can see it. We appear perfectly normal, and yet we are not.
The only evidence of this pain is our response to it. Is it the way we stop talking mid sentence while invisible ice picks jab us in the face, taking our breath away? Is it our heads turning downwards or covering up to escape the cool wind; refreshing for others, but torture for those of us with TN? Is it our absence at work, family gatherings or other social outings? Or is it this new version of ourselves - the one who looks fine but fakes health and happiness to get through an event, in order to avoid discussions about something that is difficult for even us to understand? Or maybe we dismiss concerns or questions with a wave of the hand and a “I have a headache” or whatever generic phrase we have found useful. We all have them, those simple, meaningless explanations. Who of us launches into the full details of trigeminal neuralgia? Few people have ever even heard of it, let alone know how to say it, explain it or certainly understand it. So what do you do, what do you say, to get through those moments? How do you explain such a complicated condition? Maybe we can learn from each other as we have been doing on forums, journals and now blogs all along. Maybe discovering key words, or the perfect phrase just might be the ticket to making life a little less difficult for someone.

One thing I have learned is this: “We are trying to live in a normal world with an
abnormal condition.” These genius words are not mine, but they have changed me. (thank you Jady) Like a lightbulb going off, they have helped me begin to accept things. How can my life possibly go on as it was before when I am not as I was before? If it was a broken limb or another visible ailment, we would not hesitate to modify our lives to make things work better or expect support from friends, family or coworkers. We would not have to ask for empathy or to explain. People would just accept our condition and make whatever adjustments were necessary. Perhaps if we want others to understand and accept the limitations TN creates, then we need to be willing to do the same ourselves. They can't understand us if we don't give them the tools to at least try. Maybe we all need to take the time to come up with a simple explanation for casual acquaintances to make life easier. Close friends and family probably don't need one. They'll ask questions and learn with us as we go through this journey. Hopefully they will share that with others so we don't have to.

Of course we owe no one an explanation. We don't have to say a word. We can continue to cover our heads, avoid parties and loud events, refrain from foods and beverages that are bothersome and other triggers that make our life more difficult and bring us pain. Telling someone won't make us better. But, it might make life easier,
cause others to stop and think, to at least be aware of the things that make our life more challenging, to clear the path for us so to speak, to be our support team. We don't owe anyone anything, but we do owe ourselves - to do what's best for us. And for those who support us. Wouldn't you do the same for someone else?

Please share how you “explain” this invisible condition to people, how you find ways to get support and understanding in the normalcy of life that continues to whirl around you.

-Submitted by Painterchic from North Carolina, USA