I know there is no possible way they can understand the level of pain associated with the nitemare of tn but wish they could. When i can't eat or have to eat puree crap all they can do is look at me like either I'm over reacting or how pitiful i look. No wonder we get so depressed
I always tell people…u know that burning feeling when u get water up nose when ur swimming or the burning u feel when u chew a mint that specifically says do not chew… well try living with that feeling 24/7…and still function!!
I do sympathise, it is a common rare/invisible condition problem. So many members here report just the same problem. Here is a link to something you could consider printing and asking family to read.
http://www.livingwithtn.org/page/face-pain-info-pages-part-19
It is a powerful description and I hope it helps.
...I've been very lucky b/c my family seems to believe the severity of the condition. My mom has taken off of work to lie with me in the bed and try to keep me calm, or she did the first time I had an episode. My husband gets angry b/c he knows how bad I hurt. They do struggle to understand my agitation sometimes I think; they wonder why I get so short-tempered in the midst of an episode, and I feel horribly guilty when I snap at them. They are overall very supportive. Would it help to offer them literature on the condition, explaining the significance of the pain and how it impacts all areas of our lives? Good luck to you...hugs...
I printed the demon part out for my husband to read and after reading it; he kissed my forehead, hugged me and said 'I am your six foot angel here to help you'. I cried for 3 reasons: He understands what I am going through, I am lucky to not have to face this alone, despite all of this he does his best to help but it will never be enough for TN.
I found this one paragraph sums up what we go through to a T. Thanks for sharing it again Jackie.
Jackie said:
I do sympathise, it is a common rare/invisible condition problem. So many members here report just the same problem. Here is a link to something you could consider printing and asking family to read.
http://www.livingwithtn.org/page/face-pain-info-pages-part-19
It is a powerful description and I hope it helps.
Sluggo,
It is such a hard disease for people to understand. They have never heard of it and it has the most bizarre symptoms that make you feel crazy sometimes. I think we are sensitive to how people react when really, they just don't know how to react or how to help. No one would eat puree just for the sake of it! I think handing them a print out that resonates with what you are feeling and going through is the most effective way to help people understand. It is depressing at times but judging from the people on this site, TN happens to the strongest and kindest people.
Well said Collette.
It’s very difficult, if not impossible, for some people to wrap their minds around “Invisible Disabilities”, not just Trigeminal Neuralgia. We aren’t alone in this problem. People look at you and think, “They look fine. What are they complaining about now?” They feel only those with “Visible Disabilities” deserve sympathy or compassion. This is a situation we will always have to face. The worst part of this problem is doctors who look at us and think nothing is wrong. Sad, but it happens.
We can’t shake the workd by it’s shoulders and shout, “Wake up! I’m in pain!” All we can do is concentrate on educating our family, friends and co-workers. Plant the seed and hopefully it will spread from there.
Sluggo, I am sorry you’re feeling isolated in your pain with your family. I think it’s hard for people to understand what they do not understand. My husband is really pain-tolerant and once he said,“oh come on it can’t be THAT bad!”
After my recent ER visit when the doctor talked to us he has seen the light. He couldnt believe how tolerant I have been of this most horrific pain.
Please use this site as a resource for your pain and mental anguish dealing with this. People do care and people can relate to you. If I were there I’d give you a big sloppy, TN safe hug!!!
You’re right, there is no possible way for someone who does not have TN to know what the pain is like. All we can do is describe it in our own term and hope that they can some how appreciate it. When I get an attack I try to lighten it for those around me by saying that my friend has returned and put them at ease. They can better handle it when they see me trying my best to deal with it. By telling people that you pray they will never experience the pain that you do helps them to understand somewhat. But understanding it and feeling the pain of it are two completely different things. Talking to someone else who suffers with TN is probably going to give you more satisfaction than talking to someone who has never been brought to their knees by the blinding pain of TN.
Sluggo, don’t be upset ., you have a big 'family ’ here . We understand what you have gone through . You are not alone.
I feel your pain.
Remarkably it is not just confined to neurological conditions.
I had breast cancer and had people in my face, claiming I was exaggerating and a host of comments and reactions that horrify me. I was trying to work a full-time job and undergo radiation. I could not- my boss was a cretin. I taught and the children were beyond awesome. I just said I was sick and I'd be fine. I could have easily done so had that principal not singled out people who were sick like me and people who were close to retirement (as he was).
I try very hard to educate people but I have given up.
My godmother was laughing at me "trigeminal neuaralgia hahahahaha,trigeminal neuaralgia hahahahaha". This is a lady who has been so wonderful to me prior to that.
I cannot even begin to tell you how much it hurt.
My dr thought I had atypical face pain. I thought I had ATN. It was a cute good-natured running joke between the twp of us. Guess who changed his diagnosis when the pain returned, after a few years pain free?
My godmother knew nothing of the joke with my doctor; she was undermining my pain.
This horrific pain that led me straight to disability I abhor.
I find it comforting that my dr has NEVER once doubted my veracity. I could not make up a story like mine anyway.
The pain started in 1994. My sister has acted wonderfully but the cracks. And she thinks I should be running around looking for a cure. I did that for a decade only she doubted my veracity.
My brother still does not believe me. If I mention the pain, I see him zone out and roll his eyes.
I do not understand at all.
My Dad had horrible chronic pain- bleeding ulcers. I was little and use to entertain him to get his mind off the pain. He died at the age of 32 in the OR.
I see people in pain and I cannot stand it. I want to move mountains to help them.I'll do anything I can.
I am here for you all and I am SO relieved I found this terrific website.
Ktohara, I am the same as you. I have much empathy towards others and their pain.. always have. I am sorry that some of your family react this way even after so many years... you would think they would finally "get it". I hope that eventually they come around for you and for Sluggo. Peace, Min
Oh Sluggo
- bless your heart! I understand, people constantly ask me "you feeling better today / now?" ...no idea that I live in constant pain; just at different levels of tolerance! My fam is just wonderful, my hubby has been with me the whole journey so far (7 months) and it seems that the Trileptol plus Tegretol combo is working; so far...you certainly DO have a family here! WE UNDERSTAND EXACTLY WHAT YOU GO THROUGH and HOW IT EFFECTS every PART OF YOUR LIFE! Like others have said, "if I were there with you, I would also give you a TN safe hug!" Please have a peaceful nite; a nite that you KNOW you are being prayed for, that you are being thought about! :)
Cris