Hi all,
I am sure many of you have encountered this if you have TN. I have had this problem many times, but I have never been this hurt…how do you respond when people don’t understand TN and just say extremely hurtful things? I was told “I am lucky to just have little face pain.” And that it is all in my head-as in I am making it up! I have had TN for 7.5 years, have had 4 MVD’s, nerves cut and will be having another crani this Thursday. I am TERRIFIED and people tell me that I just have little face pain!? I have hear “oh its a headache, TMJ etc” but this really hurt me. I just wish I could do something to try and get people to understand. HELP ME GET THROUGH TO THEM!!! PLEASE…
I’m sorry Ally. I’ve had my nine year old and 14 year old tell me that it can’t be that bad and I’ve had family tell me not to use my pain as an excuse to get out of doing things. My father has told me that I shouldnt talk about it or let it affect my kids ( I’m a single mom with no help from anyone) Ive gotten the it’s just like tmj, or oh, sorry your head hurts, the you don’t look like anything is wrong with you, etc. It is frustrating and hurtful. For family, I just keep sending the website descriptions as well as the online articles about ‘caring for someone with tn’. The people who really matter will read it. I also send a regularly updated meds list to close friends and family with a little note saying that if anything should happen when I’m with them to let the medical staff know what my condition is, which meds I’m taking, and the contact number for my neurologist. Treating it more like a technical ‘to do’ list has made my family and friends a little more aware of the seriousness.
Thanks robyn. I am just so confused and upset by it. Not that anyone should have TN pain, but if for just one minute they had to deal with what we deal with 24/7 I think they would understand. I am running into lots of “fake” caring…I educate people, yet they still don’t get it! URGGG
You’ll make it! I hate when medical professionals dispute that i have TN. I think that is almost worse than family! At least we have this community to support one another.
Ally Castellano said:
Thanks robyn. I am just so confused and upset by it. Not that anyone should have TN pain, but if for just one minute they had to deal with what we deal with 24/7 I think they would understand. I am running into lots of “fake” caring…I educate people, yet they still don’t get it! URGGG
Ally,
I don’t see how anyone could say that it is just a little face pain. I haven’t had anyone do that to me but I have had them compare it to their back pain or some other pain or TMJ. But I just don’t say anything. I know they will never understand. And for someone to endure all the operations you have, I really don’t know why they think you would go through all that unless you were really in a lot of pain.
I hope everything goes well Thursday. Let me know what it is again - crani?
Liz
Liz- I have had people tell me that I am lucky I have it when I am young. I don’t consider myself lucky, it just happened at this age. I typically ignore people, but this, just was not happening. Yes, I am having a dorsal root entry zone procedure done. They will be heating and destroying some nerves.
I think we’ve all encountered ignorance when it comes to TN and the misery it causes. I wouldn’t worry about the hurtful things some insensitive people say… they just aren’t worth our time and energy! I sometimes tell people that this used to be known as the “suicide disease” before there were treatments available. If pain is so extreme that people would choose death over living in agony, well, that’s about as bad as pain gets! I don’t spend a lot of time explaining it (usually because it hurts too much to talk). I tell them to Google TN and read the descriptions. Usually any website worth it’s salt will state that TN is one of the most painful conditions known to mankind.
I really hope this surgery you are having Thursday will help. That is truly awful, to have had so many procedures and still suffer. I can’t believe the nerve of anyone saying such hurtful things to you. I hope it isn’t anyone you are particularly close to.
Suzanne- I typically don’t go into much detail when I tell people what I have. If people ask questions, then I tell lots! I just never want people to feel bad for me, or look at me different. All through high school I just wanted “to be like everyone else” That never really happened. I was so blessed to be able to enjoy my first two years of college. I have had to stop for now, but hope to be returning in August!
I hope that this surgery helps too! I am just terrified right now!I will keep everyone posted and let you know.
Suzanne Marriott said:
I think we’ve all encountered ignorance when it comes to TN and the misery it causes. I wouldn’t worry about the hurtful things some insensitive people say… they just aren’t worth our time and energy! I sometimes tell people that this used to be known as the “suicide disease” before there were treatments available. If pain is so extreme that people would choose death over living in agony, well, that’s about as bad as pain gets! I don’t spend a lot of time explaining it (usually because it hurts too much to talk). I tell them to Google TN and read the descriptions. Usually any website worth it’s salt will state that TN is one of the most painful conditions known to mankind.
I really hope this surgery you are having Thursday will help. That is truly awful, to have had so many procedures and still suffer. I can’t believe the nerve of anyone saying such hurtful things to you. I hope it isn’t anyone you are particularly close to.