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Old 10-07-2010, 02:23 PM
Mylastnerve Mylastnerve is offline
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Join Date: Nov 2007
Posts: 126
15 yr Member
Mylastnerve Mylastnerve is offline
Member
 
Join Date: Nov 2007
Posts: 126
15 yr Member
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Dear Lauren,
One of the very hardest things to bear, outside of the pain, is the lack of understanding that we can sommetimes get from family members and loved ones. Chronic pain is VERY hard for someone without it to understand. It's almost like denial - like they do not want to understand that something like that could possibly exist, or even happen to them. Another thing that people think is that doctors can cure everything. Obviously not the case. Also, people can think that if you take medicine, especially painkillers, that that medicine will work completely, and the pain will be gone. Like magic. And finally, there are the people who hear "fibromyalgia" when you say "trigeminal neuralgia", and they bring you pamphlets or put you in touch with people they know with fibromyalgia. So be prepared...
One thing that helped me communicate with those around me was to google "Trigeminal Neuralgia", then print the articles that most succinctly define this condition. If people (mostly family) responded with a lack of understanding to me, I would literally sit them down and make them read these articles. Still though, the only people that I have met that truly understand are medical professionals and other TN sufferers.
It is totally not my intention to scare you, I just want to make you aware of some of the biases that you will encounter with this journey. You will not get the same treatment as the visibly disabled get. There will be no one to open doors for you or help you out. But this will all make you stronger in the end, stronger than you could ever think that you could be.
Many big hugs to you, and we've got your back, ok?
Lily
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"Thanks for this!" says:
Burntmarshmallow (10-07-2010), sadiesmom (01-09-2011)