Hi! I am new to this forum and have yet another forum topic/question? Has anyone experienced a complete lack of support from their family? My family does not ask me how I am feeling, ask about TN, will not attend a doctors appointment with me and I believe they think I am making it all up?
I am so sad right now that I just don’t know what to do. I want to yell, scream and swear at them and at the same time I know that wouldn’t do any good. At the moment, the best suggestion and solution I have is to try to spend as little time around them as possible. They are, in general, a tough family to be around…
Any positive and imaginative solutions would be welcome.
Thanks. Johanna
Johanna,
I am sorry you do not have support from your family. My family and friends have been great. But it is hard for someone who has not experienced the pain to understand. I remember years ago when I was young and an older person (every bit of 45 LOL) complained about his back. I couldn’t relate because I had not had one. Even when I got TN, I thought the pain was bad enough that I was standing at the doctor’s door when she got back from vacation. She had given me Lyrica the week before but it didn’t work. Thankfully she prescribed tegretol and it worked within a few hours. But little did I know that the TN pain would be a 1000 times worse 3 years later. You mentioned fear in another post. One of my fears is that the pain I felt last year was still not as bad as it can get. Pain is relative to what one has already experienced. That still doesn’t mean that they shouldn’t be concerned. They just do not have a way of understanding. But I am sorry. I don’t know what to say.
Liz
Hi Johanna,
If you haven’t, check out Debbie’s ‘Featured Discussion’, “A Write Up About Caring For Someone w/TN”…at times, I have to read it as “…caring for MYSELF w/TN”.
My family is scattered throughout the country and are very supportive. The one exception is my son, who lives across town and hasn’t spoken to me for 3 years, he thinks I am faking.
As with Sabrina, I find great comfort HERE!
Hope…no one can take that from you. bob
Jo,
I 200 % understand and know exactly what you are feeling. I have had TN for 8 years and my grandpa and dad seem to think I am making it up. They tell me I have to want to be better or think I am better. Hello? Do you think I actually want to have this as my life. I got TN when I was 13…it ruined those years and it haunts me everyday.
I just recently got back to school (I live an apartment with 2 girls who I thought were my friends) and I have been having a rough few days…ya know when you just need someone to sit with you or talk with you when the pain is bad? Well, that does not happen here…they see me grab my face or something and walk away. I try to ignore them, but the truth is …they are not accepting me and what my life has become.
Suggestions; do they know what TN is? Is there anyone of them that understand a little bit? Maybe have one of them explain it to the others? ( it gets really difficult to determine who actually understands, and who says they do.) Show them the facial pain website! ( There are stories up there, have them read it and say you found one point really interesting, but wanted to show them…I guess…to prove to them that you are not crazy. Honestly, it just stinks, but try and keep to yourself.
Sorry if I rambled or dont make sense. Good luck!!
To All!
Ally, you can think of me holding your hand and comforting you today if that helps! Even though I don’t live where you are I will be sending you kind and painless thoughts! I too, have friends who don’t get it. Friends who make me sit outside when it’s windy and when I say no tell me I am being ridiculous. Family who thinks I am a drug addict, faker and a wimp. However, I do have a few people in my life including my husband who do believe me and who do care a lot! I am trying to focus on those people and cultivate those relationships to the best of my ability. It still doesn’t seem to lessen the hurt of having family and friends who just don’t get it. Thank you for all of the wonderful suggestions. I have sent my family links to several websites (including the Office of Neurological Disorders within the Fed gov’t) for them to read. Hopefully, they will read them and for the first time in 2 years ask me a question or just call to see how I am feeling. I don’t have any expectations of that happening and for now I am trying to work on letting that go so I can move forward and have great relationships with the people who do care even if they don’t understand.
And you are right Bob- Nobody can take hope away from me! Thank you!
Ally Castellano said:
Jo,
I 200 % understand and know exactly what you are feeling. I have had TN for 8 years and my grandpa and dad seem to think I am making it up. They tell me I have to want to be better or think I am better. Hello? Do you think I actually want to have this as my life. I got TN when I was 13…it ruined those years and it haunts me everyday.
I just recently got back to school (I live an apartment with 2 girls who I thought were my friends) and I have been having a rough few days…ya know when you just need someone to sit with you or talk with you when the pain is bad? Well, that does not happen here…they see me grab my face or something and walk away. I try to ignore them, but the truth is …they are not accepting me and what my life has become.
Suggestions; do they know what TN is? Is there anyone of them that understand a little bit? Maybe have one of them explain it to the others? ( it gets really difficult to determine who actually understands, and who says they do.) Show them the facial pain website! ( There are stories up there, have them read it and say you found one point really interesting, but wanted to show them…I guess…to prove to them that you are not crazy. Honestly, it just stinks, but try and keep to yourself.
Sorry if I rambled or dont make sense. Good luck!!
I wish you the best of luck. That is wonderful to hear that your husband is supportive. You need someone close to you who understands. You are not a wimp, or a drug addict. I never would wish for someone to have TN but to just get a shock of what we deal with all day long!!
Johanna Smith said:
To All!
Ally, you can think of me holding your hand and comforting you today if that helps! Even though I don’t live where you are I will be sending you kind and painless thoughts! I too, have friends who don’t get it. Friends who make me sit outside when it’s windy and when I say no tell me I am being ridiculous. Family who thinks I am a drug addict, faker and a wimp. However, I do have a few people in my life including my husband who do believe me and who do care a lot! I am trying to focus on those people and cultivate those relationships to the best of my ability. It still doesn’t seem to lessen the hurt of having family and friends who just don’t get it. Thank you for all of the wonderful suggestions. I have sent my family links to several websites (including the Office of Neurological Disorders within the Fed gov’t) for them to read. Hopefully, they will read them and for the first time in 2 years ask me a question or just call to see how I am feeling. I don’t have any expectations of that happening and for now I am trying to work on letting that go so I can move forward and have great relationships with the people who do care even if they don’t understand.
And you are right Bob- Nobody can take hope away from me! Thank you!
Ally Castellano said:Jo,
I 200 % understand and know exactly what you are feeling. I have had TN for 8 years and my grandpa and dad seem to think I am making it up. They tell me I have to want to be better or think I am better. Hello? Do you think I actually want to have this as my life. I got TN when I was 13…it ruined those years and it haunts me everyday.
I just recently got back to school (I live an apartment with 2 girls who I thought were my friends) and I have been having a rough few days…ya know when you just need someone to sit with you or talk with you when the pain is bad? Well, that does not happen here…they see me grab my face or something and walk away. I try to ignore them, but the truth is …they are not accepting me and what my life has become.
Suggestions; do they know what TN is? Is there anyone of them that understand a little bit? Maybe have one of them explain it to the others? ( it gets really difficult to determine who actually understands, and who says they do.) Show them the facial pain website! ( There are stories up there, have them read it and say you found one point really interesting, but wanted to show them…I guess…to prove to them that you are not crazy. Honestly, it just stinks, but try and keep to yourself.
Sorry if I rambled or dont make sense. Good luck!!
I, too, know the feeling. This is my second round of TN. I had it on the left side and had MVD. Now I have it on the right side and I’m in between appointments to have my second MVD. I think my family and friends are just sick of hearing about all my problems, so I have started isolating myself more and more. I have a sister-in-law that asks a 1000 questions about everything but how I’m doing. When people do ask how I am doing now, I just say fine and usually just walk away or change the subject. I know they could care less. They are just asking out of pity or obligation. My circle of friends and close family has gotten smaller and smaller. I don’t want you to feel like there is no hope but you have to find your family’s comfort zone and work with that to figure out how to deal with them. We all deal with pain differently and the way we deal with our family and friends is specific to our own situations. I wish you the best and keep yourself educated and informed about “your” disease. You are your best advacate. Take care of yourself so you can deal with all the outside denial you may face.
Cyndi
Ally Castellano said:
I wish you the best of luck. That is wonderful to hear that your husband is supportive. You need someone close to you who understands. You are not a wimp, or a drug addict. I never would wish for someone to have TN but to just get a shock of what we deal with all day long!!
Johanna Smith said:To All!
Ally, you can think of me holding your hand and comforting you today if that helps! Even though I don’t live where you are I will be sending you kind and painless thoughts! I too, have friends who don’t get it. Friends who make me sit outside when it’s windy and when I say no tell me I am being ridiculous. Family who thinks I am a drug addict, faker and a wimp. However, I do have a few people in my life including my husband who do believe me and who do care a lot! I am trying to focus on those people and cultivate those relationships to the best of my ability. It still doesn’t seem to lessen the hurt of having family and friends who just don’t get it. Thank you for all of the wonderful suggestions. I have sent my family links to several websites (including the Office of Neurological Disorders within the Fed gov’t) for them to read. Hopefully, they will read them and for the first time in 2 years ask me a question or just call to see how I am feeling. I don’t have any expectations of that happening and for now I am trying to work on letting that go so I can move forward and have great relationships with the people who do care even if they don’t understand.
And you are right Bob- Nobody can take hope away from me! Thank you!
Ally Castellano said:Jo,
I 200 % understand and know exactly what you are feeling. I have had TN for 8 years and my grandpa and dad seem to think I am making it up. They tell me I have to want to be better or think I am better. Hello? Do you think I actually want to have this as my life. I got TN when I was 13…it ruined those years and it haunts me everyday.
I just recently got back to school (I live an apartment with 2 girls who I thought were my friends) and I have been having a rough few days…ya know when you just need someone to sit with you or talk with you when the pain is bad? Well, that does not happen here…they see me grab my face or something and walk away. I try to ignore them, but the truth is …they are not accepting me and what my life has become.
Suggestions; do they know what TN is? Is there anyone of them that understand a little bit? Maybe have one of them explain it to the others? ( it gets really difficult to determine who actually understands, and who says they do.) Show them the facial pain website! ( There are stories up there, have them read it and say you found one point really interesting, but wanted to show them…I guess…to prove to them that you are not crazy. Honestly, it just stinks, but try and keep to yourself.
Sorry if I rambled or dont make sense. Good luck!!
Thank you to everyone who responded to my question. I had a really bad pain day on Wednesday and my husband was so fed up with not getting any help he actually went to my mom’s house and had a talk with her. An hour later she showed up at my house to just be there as I had been to the doctor twice that day and had gotten a shot of demarol, which really scares me (so out of it I am not awake nor asleep). I was in disbelief the next day. My husband, GP, therapist have been my only real support for the last two years with ATN. I am not holding out hope that my family will participate more but it was really great to have my mom show up to help. I am mostly proud of my husband for asking for help as he really needs it- MORE THAN I DO! Thanks for all of your advice that you posted! It means a lot and all of the ideas here are great (same with “Caring for somebody with TN” post). Thank you and I can’t believe how much support I have found here- I am overwhelmed and incredibly grateful!
Johanna, I am glad you are “overwhelmed and incredibly grateful!” I am too! The helping, the caring and sharing ‘cliches’ are real here. Hold out hope, mom showed…Thank you, bob