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

Alone in this Big World

No one understands. No matter how you explain it or how others explain it no one understands. It seems like the more often people say, “I understand what you’re going through…” the more and more I get frustrated. Until you experience the pain day after day, night after night, minute after minute, please don’t tell me, “I understand.” Now I know that I shouldn’t say that NO ONE understands because other trigeminal neuralgia sufferers do understand the pain and suffering I am going through. It is my hope that the dedication to this blog will allow a place for other TN sufferers to show me that they do understand what I’m going through.

I have tried to explain to my family what I am going through. They have read up on TN to familiarize themselves with this “condition” but they still don’t understand. They will tell me daily that they understand what I am going through and each time I hear that I want to say, “Please, let me stab you in the face with an ice pick” then they can tell me that they know what the pain is like but until they are struck with it time and time again they still won’t truly understand. Feeling isolated from my family is not fun.

Co-workers. They will tell me that they are sorry I don’t feel well. My boss will tell me the same thing. But should I put a blanket over my face to block the air condition from blowing on me they are the first to laugh. I explain to them, like I have many times before, that I have a disability and it is something that helps me. Still, they laugh. To me this is them all laughing at a disabled person and it is down right ignorant. They don’t laugh at an overweight person that is eating. They don’t laugh at a soldier who lost his leg at war and walks with a prosthesis. Yet when one places a blanket over their face to prevent pain caused by air blowing, they laugh? This is probably the same person that prays for his or her family member’s health each evening before bed. Another example of loneliness.

The pain is intensified by cold/warm air blowing on my face. Loud noises also cause pain. At times I find myself hibernating in my bedroom because I can control the noise level and where the air the air is blowing or how to protect myself from my air conditioner and ceiling fan. Still feeling alone.

For those suffering from trigeminal neuralgia I am reaching out to you to let you know that you are not alone in this big world. I am here with you, suffering right along side of you. For those that had trigeminal neuralgia and have since been cured, please reach out to us currently suffering and encourage us during this difficult time. You have probably witnessed the same type of pain as we are experiencing now, and know what we are going through. If you are a family member or a friend who has a trigeminal neuralgia sufferer please reach out to that loved one and tell him or her that you may not understand (actually saying this alone could be the most supportive thing you could say) what they are going through but that you are there to support them. If you are surrounded by someone who suffers from trigeminal neuralgia ask how you can help him or her instead of making them the victim of your jokes. Help to make them realize that although they may feel alone with the pain they are being supported. Help the sufferer realize that he or she is not alone in this big world!