I know that TN is a very difficult condition to understand. I have had it for 8 years. I am now 21 and a junior in college…I live with two girls who I thought were my friends, Yet last night they tore my heart open.
I just had DREZ in May and have had 4 MVD’s prior to that. Last night one girl made a remark about how her friend who has coclear impkandts has such a hard time for her and that nobody understands and she feels so bad for her. Hold on, if you are reading this and thinking that, “ally just wants attention” then you are wrong. I do not want to have a pity party or anything. I was not able to be at school last semester because of the pain. Now that I am back they have yet to ask how I am feeling or how meds and school are going. I am a very perky happy person and always try to put a smile one, but sometimes they tear me apart. I just want understanding. I have tried explaining things to them, but they just say ok and walk away. Or if I grab my face they walk away. Both my mom and I have talked to them, but things dont change.
What do I do? I know if I saw someone else post this I would tell them to try talking to them or showing them, but they just push me away and I feel SO alone. I lost friends in HS because of TN and I wanted college to be a new start, but I feel them slipping away…
Ally, I don’t think that the average person understands what we are going through. We know how painful and debilitating nerve pain can be, but most people have only experienced muscular pain. The kind of pain that does respond to meds and does go away. They just don’t get it because it is outside of their personal worldview. It is a shame that your college friends aren’t making more of an effort to support you through this. Maybe they just don’t know what to say. Stay as active in college activities as you feel up to doing. You never know where or when that special person who does " get it" will turn up. Thinking good thoughts for you!
healthy people can not relate to chronic disease. it is not part of their learned experience. chronic pain people experience fear in such a way to which healthy people can not relate. we experience fear on a continual basis that would be profoundly foreign to a healthy person. “will i have pain today?” “can i do this activity i like?” “can i eat this meal?” “can i go outside?” “can i wash my hair?” “will i feel well enough to go out tonight?” questions like this do not pose taxing or fearful to a healthy person.
social life at college does not begin and end with your two roommates. there are gazillions of social opportunities at school; clubs, events, committees, societies, even sororities. go out there and start a new possibility. once you meet some new people, the weight you place on your roommates’ friendship won’t feel as heavy.
your roommates may or may not ever possess the ability or desire to understand your chronic pain condition. as co-habitants of living space, they must respect you and your needs, but they are not required to be interested or curious in TN. it would be nice and thoughtful, but people tend to operate from a cost vs. benefit perspective. “how does the cost of committing my interest to a TN/chronic pain person benefit me as a healthy person?” sometimes healthy people find enough benefit and sometimes they don’t. what we as chronic pain people must remember is that healthy people have the right to make that decision for themselves, even if it means they are jerks and we are hurt by the decision. it teaches us who to give our energies to and who to take at face value. the silver lining for you is an opportunity for new, and hopefully more compassionate, roommates next year.
best of luck,
vesper
Ally, I’m so sorry that the situation is making you frustrated and unhappy. It may well be that your room-mates feel helpless in the face of your pain and uncomfortable in their inability to relate to it. Sadly we cannot change other people to make them behave in ways we would like, we can only change our own responses to them. That means trying not to feel so hurt and accepting their limitations, however hard that may be.
I think that the other advice you have been given, about going out to find new friends and activities, is very sound. Also, trying to look positive, even if you don’t feel it, may help you to enjoy things that distract you from the pain.
Hi Ally,
well, I am 46 and new to this pain, but I can relate to what you’re saying. Unfortunately, the rare disease…and such an unheard of disease does not get much understanding or pity. Even my closest friends, my family, etc., are tired of hearing me complain about my face. I have decided to stop talking about it and start writing everything down. I would get a councelor, and if any councelor tells you that you are just experiencing psychosomatic symptoms, tell her/him, she/he is fired! Get a good medical doctor in your town who understands your pain.
I’m sorry you feel so alone. You are NOT alone, and you have every right to feel sad. Try hard to understand where they are coming from…where are they coming from…hmmm…
Ally-
I too, am struggling with a loss of friends, a lack of understanding and a lack of compassion from my family and some friends. I too, feel torn apart from the inside out due to the fact that in 2 years of having TN my mom, sister, etc… have never asked me how I am doing/feeling at all. I recently decided to try to change that. I have since sent my family unsolicited information on trigeminal neuralgia- including info. on the pain, drugs, surgeries etc… that I have and will have to undergo to be well. While I have had a little success with this tact I am beginning to realize that letting it go and chalking up their apathy to ignorance is a much safer thing to believe than that they “just don’t care.” I am 33 years old and it has been tough to keep friends, but the one’s that have stuck by me have really stuck by. Just remember that 2 girls or 2 people or 10 people cannot break you and that you do have a wealth of caring people here on this site and many more in your future. It’s hard to say “this too shall pass” but it will even though you will have to endure emotional pain to get through it. You sound like a strong young woman to have been dealing with TN at such a young age. Reading your story gives me hope that one day, I too, will be as strong as you! All my best and a big hug! Johanna
Thank you everyone SO much! I really appreciate all your responses. You proved points that I didn’t think deeply into before. They don’t understand chronic pain…or the one does not. One of them lost her mom to MS the day I had my last surgery. I wonder if she is afraid to get close to me because of that? the other one just does not get it.
I have found that writing both here and a journal that I have kept since the start helps. I know I can’t change what is going on in their body or my mind,but I wish I could show them.
The little things are what gets me…I don’t go out and party or anything like that. I can barely even handle a loud restaurant, so when everyone can get dressed up and put make-up and go to a restaurant and I can’t because the brush on my face is a trigger and loud is a trigger? UGHH. I am going to write a book one day!!
On another tangent…those of you who are able to work: do you have any precautions in place, legally? or did you explain things to people? how were your bosses accepting? I want to teach students with autism and they need me there consistently so I am hoping the pain will work away from me!!!
Hi Ally,
I am starting to teach–a dream job, something I have wanted for so long. I am terrified that things will not go well. I didn’t tell anyone ANYTHING. My husband told me I shouldn’t, and I didn’t think I should.
Do you have TN or trigeminal neuropathy or facial pain? Sorry if you have written this down somewhere. What surgery have you had? It didn’t work! 
I want to cry when I hear that a surgery was not successful. We have a man around here, a Dr. Tew in Cinci who does some sort of surgery. People flock to him. You can google his name.
I’m sorry, Ally. Be brave…we are here for you.
Ally Castellano said:
Thank you everyone SO much! I really appreciate all your responses. You proved points that I didn’t think deeply into before. They don’t understand chronic pain…or the one does not. One of them lost her mom to MS the day I had my last surgery. I wonder if she is afraid to get close to me because of that? the other one just does not get it.
I have found that writing both here and a journal that I have kept since the start helps. I know I can’t change what is going on in their body or my mind,but I wish I could show them.
The little things are what gets me…I don’t go out and party or anything like that. I can barely even handle a loud restaurant, so when everyone can get dressed up and put make-up and go to a restaurant and I can’t because the brush on my face is a trigger and loud is a trigger? UGHH. I am going to write a book one day!!
On another tangent…those of you who are able to work: do you have any precautions in place, legally? or did you explain things to people? how were your bosses accepting? I want to teach students with autism and they need me there consistently so I am hoping the pain will work away from me!!!
Jean:
Thanks for your reponse. I have atypical TN. I hve had 4 MVDS and the DREZ procedure with dr. Ken casey. I have had so many MVDs because the blood vessels keep growing back…the pain got better for a whie : ( Do you wnt to tell nyone at school? I hope you are hving a good day with pain!!
Nancy:
Thank you for your response too! I am not familiar with FMLA, but I will look in to it.
In a book I am reading now I came across something interesting. If you were to ask someone to write an autobiography of you, would it be exactly how you would want your life to be portrayed? Most likely not. If you were to write autobiograpy of yourself, could you write the book perfectly as to how you wanted people to see yout life?
Probably not. Relating this to TN…we must have patience with those who dont understand TN. If we can’t explain our own life perfectly to people, how can we expect that they understand what a life with TN is like. I am not saying we shouldnt get angry when others dont understand…just some food for thought!
Ally,
I’ve read all these responses from people who have friends who do not understand the pain. I am 56 yrs old and my co-workers have seen me with some of my severe pain. All of them are in their 50s and they don’t understand. So I imagine teens cannot understand. A teen can’t even understand back pain because for the most part they haven’t had any pain. I wished you have not had to endure what you have had to in your short life. I hope something can be done for you. You are in my prayers.
Liz
It is a difficult illness for people to understand, unless they experience the pain or see some broken limb etc. they really do not have any idea how terible this is. I really do feel for you because at least I am retired not just starting out, how you concentrate I will never know, I can forget what I my saying or what anyone else has said to me. I think this illness needs talking about more, there does not seem to be much research done here in England for it. When the pain strikes I forget everything except the pain I could walk under a car quite easily, the medication keeps me going, but for one who is young they have got to find a way of helping you to lead a normal life. I feel sorry for me, but I feel a thousand times more sorry for you.
Thank you so much for these awesome responses! It really makes me feel that I am not crazy. I wish there was someway that there could be more awareness and research for TN done. For example, there are months dedicated to cancer. Yet alone, we all know what cancer is and does. It is a VERY evil thing that takes lives. I have watched someone very dear to me just fade because of it. But people don’t know what TN is or does to us. It may not take lives, but it takes over.
Jackie,
I got such a feeling of comfort after reading your post. Thank you : ) I am not sure why I want to be friends with these girls…I guess I was soo close to them for 2 years and then I got sick and they couldnt accept that. They cant see it, since I continue to do things in life! I am realizing that I am coming to the point that I probably need to move on with people in my life. I will try talking to them though first… THANK YOU!!
Jackie,
Thank you so much for your support. I go back and forth between saying I don’t care and then I get frustrated when they prove to me that they don’t understand. I know that it will not matter in 20 years and I probably won’t have them in my life much, but sadly I tend to think of now, now, now! I keep saying to myself life will get better one day. And I really hope it will. I just want everything to fall into place! I know life is never perfect or stress free, but I hope that life will let me live for a little! It just seems to bother me that they don’t see what this doing to me. I am either on or off. When I have pain I am off. It just confuses me that they don’t see that or are they ignoring it? Idk. It is all asking generally the same thing…and hoping for understanding and awareness. I hope that one day we are all relieved of our pain.
Does your daughter understand TN?
Jackie said:
Hi Ally, you just touched a nerve with me and as a fellow TN gal with a daughter of 21… I feel so for you. I do not expect you to walk away of course, this is a frighteneing time for you and you want to keep some"knowns" about you. I bet tho when you are 40 you will not bother with or see much of these friends, it takes more than they give to retain friendship. I realize that does not help now and wish I could give them a shake. I ahve been sdo lucky with friends, family and my employer, all are very caring. Luckily I am the boss at work or who knows, I owe a lot to my staff who help me a lot, one day you will come across people who care as I have and the world will seem a better place. an old friend once told me when I had a life threatening illness stop worrying about next week/month/year, it is too much to think about, just say well I am sure I will get thru today, and guess what? its been 7 years now and I am not dead or dying yet so she was right. At least things can only get better and YOUR experience will make you a better and more caring person. Take Care, Jackie
Hi Ally! I wish I could give you some great words of wisdom. The bottom line is people simply don’t understand TN and people can be very cruel. Someday you will find a “true” friend who will stand by your side. Shianna does not like to share her TN with anyone really. And she definitely doesn’t like anyone to know about her past MVD surgery. She says that kids think it’s weird and get freaked out about it. She is only 13 so this age is tough anyway. She does not want to “stand out” in any way…wants to be as “normal” as possible. Thank goodness she has done pretty well since her MVD surgery over 4 years ago. She does not deal with pain on a daily basis like most TN sufferers. It seems to come in spurts lasting only about a week and then it will go away for a few months. This helps her to live a pretty normal life. However reading your post reminded me of a very close friend of mine who confessed that she thought Shianna was faking it. She finally confessed out of guilt after they found a large artery wrapped around Shianna’s nerve. Honestly, it has taken me years to get over that. A close, christian friend whom I had confided in. So, even adults can be very stupid. I will be praying for you that God will put a good friend in your life 
I sure wish you lived here because Shianna would be your friend Tell your mom hello for me. Did I tell you we saw Dr. Casey? We saw him almost 2 years ago when Shianna was having recurring pain. I email him occasionally for advise. We thought she was going to need surgery again but things calmed down. He put her on several different B vitamins and she is still doing good. I think of you often.
Ally -
I haven’t been on here for awhile so had some catching up to do. I am so sorry school is going like this for you…I can’t imagine going to school with this. Noise triggers me so fast, along with stress, emotions, talking, laughing, ect…and when I was in college I had a blast…none of this was a factor. Now I feel like I live in a bubble. I don’t keep in contact with very many people and don’t visit friends. And I don’t even tell people anymore what is going on because I feel they have no idea what I am talking about. I actually had a lady that I had admired tell me that since I haven’t found a cure for this, I need to consider the factor of evil and how demons are in my face and I should be prayed over for this. That was the straw that broke the camels back for me and I decided I just wouldn’t share my feeilngs and pain…until I found this website. Now I feel alive again in a way that I can actually talk with all of you. I can’t give you any advice about what you should do with your roommates…I just hope and pray someday we can all catch a real break and get over this! I don’t talk to my husband much about this anymore either, just cause he does not understand what it feels like at all…that was really really hard for me to understand, so I do understand that feeling of being torn up because it feels like they don’t even care.
Ally Castellano said:
Jackie,
Thank you so much for your support. I go back and forth between saying I don’t care and then I get frustrated when they prove to me that they don’t understand. I know that it will not matter in 20 years and I probably won’t have them in my life much, but sadly I tend to think of now, now, now! I keep saying to myself life will get better one day. And I really hope it will. I just want everything to fall into place! I know life is never perfect or stress free, but I hope that life will let me live for a little! It just seems to bother me that they don’t see what this doing to me. I am either on or off. When I have pain I am off. It just confuses me that they don’t see that or are they ignoring it? Idk. It is all asking generally the same thing…and hoping for understanding and awareness. I hope that one day we are all relieved of our pain.
Does your daughter understand TN?
Jackie said:Hi Ally, you just touched a nerve with me and as a fellow TN gal with a daughter of 21… I feel so for you. I do not expect you to walk away of course, this is a frighteneing time for you and you want to keep some"knowns" about you. I bet tho when you are 40 you will not bother with or see much of these friends, it takes more than they give to retain friendship. I realize that does not help now and wish I could give them a shake. I ahve been sdo lucky with friends, family and my employer, all are very caring. Luckily I am the boss at work or who knows, I owe a lot to my staff who help me a lot, one day you will come across people who care as I have and the world will seem a better place. an old friend once told me when I had a life threatening illness stop worrying about next week/month/year, it is too much to think about, just say well I am sure I will get thru today, and guess what? its been 7 years now and I am not dead or dying yet so she was right. At least things can only get better and YOUR experience will make you a better and more caring person. Take Care, Jackie
Jackie,
Thanks for the encouragement. The amazing thing about this lady is that she ‘claims’ to be this absolute perfect catholic and what hurt the most is that she is my sister-in-law’s mom, and I grew up knowing them. So it came as a very big surprise to me that she would say such a thing! My mother-in-law has made remarks behind my back about me being emotional/hormonal when I am in alot of pain. So I don’t share anything with her anymore as is the case with several other people. It’s not worth the comments that I hear either directly or indirectly about my condition. They have NO idea how this feels…I don’t expect them to. How could they? But to make accusations about me is the worst. I have told my husband that whatever I plan to do next, whether it be surgery, nerve blocks, ect, will not be any of their business and I will carry on as I do every other day. I feel the same way as you and Ally, when I feel good, I love to have fun, laugh, do whatever I can - and when I have a bad day - It totally reflects on how I am as a mother and wife. I have a 5 year old, 3 year old, 1 year old, and one due in 3 weeks. So the fun starts after the pregnancy and I WILL BEAT THIS before it beats me. I feel so much more hope in finding this website just knowing there are other people out there that can relate gives me hope…thanks!
Jackie said:
Katie
I know this is Ally’s discussion but I was so distressed for you that I HAVE to say something to you. The woman who made the suggestion of evil and devils etc should be ashamed of herself. You do not look like a bad person to me, just think if a so called god or devil visited this complaint onto bad people there would be quite a few million in line before you! It really beggars belief and such thoughts are very unchristian. Take absolutely no notice, she needs help. You have this illness, like me because something wrapped itself or sited itself around yout trig nerve, no other reason. Sorry I am venting now but I felt very strongly for you, this was the ugly side of religion, I know many people on this site pray very hard for all of us and that does not work so please don’t let the ignorant get to you. You deserve better and if there is a caring god he would never visit this onto you. Were all the people in the Twin Towers evil or just unlucky to be there when pure evil struck I wonder? You decide, I have. Take care, we care, sorry for the rant, I am not as mad as I sound just vexed. Jackie
Katie said:Ally -
I haven’t been on here for awhile so had some catching up to do. I am so sorry school is going like this for you…I can’t imagine going to school with this. Noise triggers me so fast, along with stress, emotions, talking, laughing, ect…and when I was in college I had a blast…none of this was a factor. Now I feel like I live in a bubble. I don’t keep in contact with very many people and don’t visit friends. And I don’t even tell people anymore what is going on because I feel they have no idea what I am talking about. I actually had a lady that I had admired tell me that since I haven’t found a cure for this, I need to consider the factor of evil and how demons are in my face and I should be prayed over for this. That was the straw that broke the camels back for me and I decided I just wouldn’t share my feeilngs and pain…until I found this website. Now I feel alive again in a way that I can actually talk with all of you. I can’t give you any advice about what you should do with your roommates…I just hope and pray someday we can all catch a real break and get over this! I don’t talk to my husband much about this anymore either, just cause he does not understand what it feels like at all…that was really really hard for me to understand, so I do understand that feeling of being torn up because it feels like they don’t even care.
Ally Castellano said:Jackie,
Thank you so much for your support. I go back and forth between saying I don’t care and then I get frustrated when they prove to me that they don’t understand. I know that it will not matter in 20 years and I probably won’t have them in my life much, but sadly I tend to think of now, now, now! I keep saying to myself life will get better one day. And I really hope it will. I just want everything to fall into place! I know life is never perfect or stress free, but I hope that life will let me live for a little! It just seems to bother me that they don’t see what this doing to me. I am either on or off. When I have pain I am off. It just confuses me that they don’t see that or are they ignoring it? Idk. It is all asking generally the same thing…and hoping for understanding and awareness. I hope that one day we are all relieved of our pain.
Does your daughter understand TN?
Jackie said:Hi Ally, you just touched a nerve with me and as a fellow TN gal with a daughter of 21… I feel so for you. I do not expect you to walk away of course, this is a frighteneing time for you and you want to keep some"knowns" about you. I bet tho when you are 40 you will not bother with or see much of these friends, it takes more than they give to retain friendship. I realize that does not help now and wish I could give them a shake. I ahve been sdo lucky with friends, family and my employer, all are very caring. Luckily I am the boss at work or who knows, I owe a lot to my staff who help me a lot, one day you will come across people who care as I have and the world will seem a better place. an old friend once told me when I had a life threatening illness stop worrying about next week/month/year, it is too much to think about, just say well I am sure I will get thru today, and guess what? its been 7 years now and I am not dead or dying yet so she was right. At least things can only get better and YOUR experience will make you a better and more caring person. Take Care, Jackie