25 Things People Living With Trigeminal Neuralgia Wish Others Understood

3.“Don’t read anything into my facial expressions — or lack of. I’m smiling at you on the inside.” – Bryony S.

4.“It is as invisible to us as it is to the outside world. I am astounded when the pain comes that I see no visible evidence of it.” – Carol L.

5.“I wish people — doctors, judges, lawyers, government officials making decisions about our life and especially insurance companies knew that trigeminal neuralgia is a horrible disorder. It robs us of our life, just like so many other disabilities other people have. Just because they can’t see it does not mean it’s not there. Just because I don’t have blood running out of me or I’m not swollen, or I’m not bruised or red does not mean I’m not hurting and hurting bad.” – Donna E.M.

6.“I don’t like hearing that ‘it doesn’t hurt to smile’ when for me that is one of the most painful things to do. I miss smiling.” – Carly J.

7.The constant fear I live with never knowing from one day to the next if I’ll be able to open my mouth, chew, or hold the phone on either ear.” – Myra K.

8.“The fact that you count down every hour until each appointment that may help the unimaginable pain, and when you get there there is no guarantee that they’ll believe you, diagnose you correctly or even acknowledge it. I was told for months on end it’s not TN because ‘you are too young to have that.’” – Erin M.

9.“You can’t predict when an attack is going to happen. You do your best to watch trigger signs, but that’s all you can do. Also, you may look like everything is OK on the outside and feel horrible on the inside.” – Becky H.

10.“The pain that TN can cause is a pain greater than most people will ever experience in their lifetime (that includes childbirth). It’s not a pain that most could ever even imagine. It’s not like a migraine, or toothache, etc. It is so much worse.” – Katy H.J.

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