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25 Things People Living With Trigeminal Neuralgia Wish Others Understood

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There are few rare diseases known that are as painful as trigeminal neuralgia (TN), a disorder of the fifth cranial trigeminal nerve. In fact, TN is often referred to as the most painful disease known to humankind. Many who live with it experience stabbing and throbbing pain throughout their face, which can be unpredictable and easily triggered. Because TN is so debilitating, it can lead to an inability to even brush one’s teeth, let alone participate in social events. The resulting isolation can cause a decrease in quality of life and worsening of one’s mental health.

To help combat the isolation, fear, and living in the unknown, it is important to raise awareness. The Mighty teamed up with End Trigeminal Neuralgia, a Facebook community page that provides resources and emotional support to people living with TN, to ask our communities, “What’s one thing you wish others knew about living with TN?”

Here’s what the community had to say:

  1. “My face feels like it has been hijacked and day after day I hang on by a thread sometimes. It hurts to live.” — Irene D.
  2. “I may look like I’m not interested, but that isn’t it. I’m in intense pain and you just can’t see it.” – Barb B.
  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.
  11. “It’s the not knowing when and how bad the pain will be. Once it starts, your life stops. You can’t eat, smile, talk or brush your teeth. My heart goes out to those with TN. Stay strong.” – Mark E.
  12. “When a person or loved one tells you about the constant pain, fear, anxiety, depression, and hopelessness, pay attention! Then go do some research. We don’t tell anyone who is depressed that they’re ‘just sad’ and they’ll ‘be all right.’ Why would you say that our condition is ‘just a headache?’ If that’s what it was, that’s what we’d call it. There is no cure, so empathy, understanding and spreading knowledge about it will save lives.” – Kristin K.
  13. “I feel as though I’m no longer living, just surviving. I woke up one day in excruciating pain and I’ve been caught in my own personal prison since.” – Ashly D.
  14. “I have good days and bad days. The bad days weigh out the good days. Have lost a lot of friends since having this thing. Most of the time you have to say ‘no’ to people because you can’t go places when you’re in such pain.” – Kerry E.
  15. “It is frightening to watch ER staff Google your condition while you are in agony.” – Rebecca R.M.
  16. Not only does TN affect me, it affects the entire family. It’s a family’s invisible illness.” – April B.M.
  17. “It’s not a headache. It’s not our sinuses. It’s not our teeth. Please stop treating us like it is. And no, we are not exaggerating and we are not addicted to painkillers.” – Jacy C.
  18. “I have compared the pain to a toothache and earache combined, in addition to having hot coals placed inside my cheeks. The pain is more than I can stand, even with my high tolerance for pain. It makes me flinch. I can’t talk on the phone or talk at all. Anything that touches my lower lip or cheek sets off waves of throbbing pain. Something as light as a breeze from the car fan will set it off. The pain wakes me up in the middle of the night if I turn the wrong way or if the sheets touch my face. The stress from knowing a certain move is going to create the pain throws me into a panic attack. The medicine makes me groggy and not myself. My head feels sore after the episodes of pain are gone.” – Dora L.
  19. “Having concentration is near impossible, as are finding the right words for anything, really. I tell people to drink an ice cold drink quickly, get the ‘brain freeze’ headache and then try and talk to me through that. Oh, except that is only one set of those nerves — some of us have it on all branches, on both sides. I haven’t had a pain-free day since the end of 2010. Flares are a totally different creature and they have changed me. I am anxious; I am trapped in my body. I am mourning my previous ‘carefree’ life.” – Saber S.
  20. “Many doctors never see a person with TN in the whole of their working life, so when they do come across someone with it they can feel helpless and don’t know how to deal with it. Many patients may know more than they do about the condition, so sometimes we need to be proactive in helping the doctor to help us.” – Anne M.
  21. “I wish people knew how much I don’t tell them. How many times a day I experience excruciating pain without ever mentioning it. How they might be looking me right in the eyes while a lightning bolt is striking my face and they have no idea. Trigeminal neuralgia isolates you in that way.” – Amanda L.
  22. “How lonely TN can make you feel. If it wasn’t for my friends in my phone, I doubt I would cope at all.” – Lyn B.
  23. “It’s like having your face hit by a baseball bat constantly for weeks and months on end. There is no relief.” – Trudy W.
  24. “It’s much easier to say ‘I’m fine,’ rather than try to explain how you can be in so much pain you can’t speak at one minute, then OK the next, after so many years. I hate being seen as a complainer. I’ve lost long-held friend connections through not being able to join in on outdoor activities.” – Kelly N.H.
  25. “Sometimes our silence says as much about our pain as screaming. Triggers can include talking, and we sometimes find it hard to get the words out through the paroxysmal pain. It’s important to give us time and to listen when we can speak.” – Laura T.

Do you have trigeminal neuralgia? What’s one thing you wish others knew about living with the condition? 

Originally published: November 4, 2018
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