Is it mean to wish that people could feel this JUST ONCE so they know that you are for real about it? I am very interested in your responses. God bless!
I so know how you feel I struggled with a really bad attacks still do and break through pain people I know do one of two things totally ignore it and not comment or make patronising remarks that feel as if they think I’m some kind of hyperchondriac it’s hurtful I don’t know about you but I feel very fragile I wish just for once they could feel what TN suffers feel I’ve got to the point were I paint I fake front on and just carry on or hide away until I’ve increased the meds enough to stop the pain the only thing I can say its TN let’s you no who your real friends are hugs
No, it’s not mean.
I think many of us would NOT wish this on anyone…BUT there are times, when I know I have wished that they could understand its NOT a headache, nor a migraine, it’s not fibromyalgia, its not a toothache.
And NO you don’t know how it feels, so stop trying to commiserate with me…UgH and comparing to your past pains…there is no comparison.
I used to take it very personally…now I pretty much get that they can’t possibly understand.
Those friends or family members that don’t comment at all?
I think they just don’t know what to say …
Many people close to us feel helpless, some just worry about saying the wrong thing.
I understand how you feel Donna, I think we’ve all been there…
(( hugs )) Mimi xx
I know how you feel. I have never been able to actually talk about my pain to any of my family. Initially I think they believed that I had some sort of a mental breakdown, which I did have but pain was the reason behind it. So they avoided talking about it and whenever I mentioned that I hurt they ignored me....I think my mum believed that when they ignore it it won't exist or something like that and she instructed other members of the family to behave accordingly. I was only able to speak up once I got officially diagnosed, but they still don't really want to hear, perhaps because it hurts them and there's nothing they can do about about my pain. Also, as time goes go people get used to your pain and because they can't sort it out they won't talk about it either, it's just my feelings. People at work don't ask me anymore how I'm doing (I'm actually grateful for that). I used to talk about my pain to the psychiatric nurse I was seeing for CBT but there were a lot of tears and sad feelings for the life I used to have and I didn't always feel better afterwards. so now it's just me and my pain and when I feel like complaining about it I wait til I see my masseur who has a nerve in his chest cut after a lung surgery and who's on strong opiates because of that and can relate...
Mimi,
I think you are absolutely right...don't know what to say; afraid of saying the wrong thing; whatever. I find myself trying to say things like "well, we all have things that hurt, right?" and playing it off as it is just like THEIR pains - but I truly know it is not.
I don't EVER wish this on my worst enemy, but it is truly something I wish I could share at times...you are NOT being a bad person Donna! ...just truthful :)
Bless ya!
Cris
Mimi said:
No, it's not mean.
I think many of us would NOT wish this on anyone....BUT there are times, when I know I have wished that they could understand its NOT a headache, nor a migraine, it's not fibromyalgia, its not a toothache.
And NO you don't know how it feels, so stop trying to commiserate with me...UgH and comparing to your past pains...there is no comparison.
I used to take it very personally....now I pretty much get that they can't possibly understand.
Those friends or family members that don't comment at all?
I think they just don't know what to say .......
Many people close to us feel helpless, some just worry about saying the wrong thing.
I understand how you feel Donna, I think we've all been there...
(( hugs )) Mimi xx
I think it is mean to wish people could feel it. Would you want anyone to wish you had a flareup?
That being said, it's a harmless kind of mean that comes from frustration. Your wish can't actually do any harm to anything but your own conscience. Enjoy it once in a while, it doesn't make you a bad person.
It seems to me that there are several possible reasons to explain your loved one's actions.
1. They have no idea what to say in response. "Wow, sucks to be you," "I'm sorry (for something I don't control)," "umm... okay, does that mean you're canceling lunch?" Everything sounds trite after you've said it once.
2. They have no idea what you're talking about because they really don't understand what it is. I've had relatives learn all about TN... only to forget it entirely. If you asked them today they'd say I have migraines or something.
3. You're right, she thinks you're lying or making a mountain out of a molehill.
4. You've become "one of them." Sometimes people with chronic conditions become so focused on their illness that they feel the need to talk about it to everyone. Truth is, sometimes even loved ones don't care much if they don't live in the same household. It's not part of their relationship with you and they'd like to keep it that way.
If you came to me asking for advice on how to handle it I'd tell you that you have enough pain and can't afford the extra burden of hurt feelings. Assume the best in your loved one and pick #1 or #2. If that doesn't work, pick #4 until she tells you different.
Thanks everyone for your replies and support! Much love to you all! ♥
That is not mean at all. I wish all the time that people who don't understand could go through what I go through for at least one day. I don't wish that they would have it all the time, but maybe just one episode of each thing I go through. I even wish doctors could feel it, because a lot of times I don't know how to explain my symptoms, but if they were able to feel it themselves, they would understand what I was trying to say. Pretty much everyone that I am close to has seen me have bad episodes (not of TN- only my husband has seen my bad episodes of TN), but people who barely know me haven't. The close ones believe whatever I say now and they have actually been quite helpful in my new TN journey.
Don't worry about wishing others could feel it. We have ALL thought of that at least once or twice, and not in a malicious way. Just in a way so they can understand you better. Hugs to you!
I think it's just a matter of they cannot understand. Not that they don't WANT to. Just that they CANNOT!!! Only we can. No point in trying to get them to. I mean there may be a few people who get it. But most don't. :(
That's how I feel. I don't want them to have it PERMANENTLY..........just for a day so they know what it is and how it feels. That way they would understand. Hugs back to you!
GerberaDaisy said:
That is not mean at all. I wish all the time that people who don't understand could go through what I go through for at least one day. I don't wish that they would have it all the time, but maybe just one episode of each thing I go through. I even wish doctors could feel it, because a lot of times I don't know how to explain my symptoms, but if they were able to feel it themselves, they would understand what I was trying to say. Pretty much everyone that I am close to has seen me have bad episodes (not of TN- only my husband has seen my bad episodes of TN), but people who barely know me haven't. The close ones believe whatever I say now and they have actually been quite helpful in my new TN journey.
Don't worry about wishing others could feel it. We have ALL thought of that at least once or twice, and not in a malicious way. Just in a way so they can understand you better. Hugs to you!
I agree some ppl should feel the pain just for one day so they understand. My work manager and yes even some family members just don't realize how bad it is. Linda
I disagree. I think that we should try to get those that are close to us to understand, at least to some degree. Relationships are hurt, because the people around us do not understand what we are going through. My mother didn't really understand what I went through with POTS until she donated blood at work one day. She became really sick and even fainted. After that day, she was much more understanding of what I go through on a daily basis and it really helped build our relationship in a more positive way. I mean, what is the point of awareness, if it isn't to try to get others to understand what we go through? If others don't understand and think it is a big deal, they won't care to fund research that goes towards better treatment or even a cure. I know that people can't understand fully unless they have had the same symptoms, but they can understand in other ways or at least try to be more supportive. Even among us with TN, not all of us have it as bad as some others, but we are supportive of one another and understand what the other is going through, at least to some degree. I will never stop trying to get others to understand.
Min said:
I think it's just a matter of they cannot understand. Not that they don't WANT to. Just that they CANNOT!!! Only we can. No point in trying to get them to. I mean there may be a few people who get it. But most don't. :(
Good Point GerberaDaisy. My daughter unfortunately is still not on board. She thinks I need to get on with my life. She feels as tho she is choking on hearing about my problems... But I like what you say about different degrees of pain and we are all still supportive. I will keep trying with her, of course, but I am not very hopeful... :(
no not mean at all i wish it every day,not for a long time not a full bout not even a day but just one, one quick 5minutes worth cos ive tried and tried to explain it but not sinking in been with partner 12yrs now,had tn for 16yrs and my mother still tells me to put a hot water bottle on it,so yes give them that quick 5mins of sharp mind splitting disableingly uncontrolable pain and they might have some idea,but im currently going through a bad bout at the moment ask the question in about two months when hopfully painfree and you might get differant reply!!
Donna, I have wanted my husband to take a video of me while in the throes of thrashing around, grabbing my head, pulling at my hair and trying to stifle screams, (sometimes unsuccessfully) kicking the cupboards, throwing all the meds out of my cupboards and him giving me injections - sometimes twice a day.
I have had the same response. We watch one TV programme and when I asked someone near and dear to me to tell me what happened in the previous episode he said: "Why didn't you watch?" I replied: "My head." He looked over my head and across at the wall behind me and pretended not to notice what I had said.
I had a friend who ditched me when I could no longer meet her at the mall for lunch. I explained the implications and complications of TN. She just said "oh well see you when you're better". I did not hear from her for 3 years until she had a back operation. Her pain was excruciating and all her friends had ditched her. I was the only one who could identify with what she was going through. Now she contacts me regularly to complain about her aches and pains and I listen politely and empathise.
My kids (all adults) have all downloaded the issues regarding TN and they know a lot about it but pretend they don't and don't acknowledge it even exists. I am not asking for sympathy, just a little empathy and perhaps somebody could find the love in their hearts to simply put an arm around me or give me a squeeze instead of pretending this condition does not exist.
Sweetheart we are here for you. I call it the THEMS and the USES. THEY will never understand what we go through so we are here for you. If they don't understand don't try and explain it to them. They can't understand if they don't want to and you will just frustrate yourself.
They can only walk in the light they have been given.
They can just be grateful if is not them
Lots of love,
OLDRISKA YOU HAVE A GREAT MOM.
Phil, I have a buddy who has had - WAIT FOR IT - 37 operations to sort his TN out. Nobody believes me when I tell them that. But it is true. I don't know the whole story, did not want to ask but a lot to do with misdiagnoses. He is now 66, he has been married to the same woman for over 40 years and when he is having a very, very severe attack his wife asks: "Is the headache very bad today?"
phil ochs said:
no not mean at all i wish it every day,not for a long time not a full bout not even a day but just one, one quick 5minutes worth cos ive tried and tried to explain it but not sinking in been with partner 12yrs now,had tn for 16yrs and my mother still tells me to put a hot water bottle on it,so yes give them that quick 5mins of sharp mind splitting disableingly uncontrolable pain and they might have some idea,but im currently going through a bad bout at the moment ask the question in about two months when hopfully painfree and you might get differant reply!!
Thanks for your responses everyone! I reallly appreciate it. My latest attacks have only been coming at night. I have a few twinges during the day, but every late afternoon and evening, it progressively gets worse. How weird is that? And this time around, the stab/shocks are so fast when it gets really bad that it's kind of like a sewing machine.....in/out, in/out, REALLY FAST. I think that is worse than a long shock because I can't even try to get ahold of the pain and try to work through it because it's so fast.
No, you are not being mean. THEY are being more than mean for not listening to you. I have a voodoo doll..never mind !
We all want to be validated and understood. I think letting go of the need for that, when we are in constant pain of some degree or another, is really hard. However, I can't think of anyone I am angry enough at to wish this on them! Maybe instead of their feeling my pain literally, I wish they could feel my feelings about the pain. If that makes any sense.