Aa
My spouse and some of my friends just don't get what treatment means
I must be feeling like sharing today so tell me to shut up if I'm posting too much.
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
During my original tx on SOC, my wife, who I love with all my heart, just didn't get that I felt like poop and couldn't do many of the activities that I did before. On shot night she seemed annoyed that I was sensitive to light and sounds and just wanted to curl up in a ball in a quiet environment. When I told her that I was accepted into Prove 3 she said that it's my decision but I better act normal around her and the kids.
All of this is very usual because we have a child with a life threatening disease. From the day of his diagnosis we've been very supportive of him, each other and channeled our grief into raising funds for the cure for his disease. Daily we share in his care giving and therapies.
Next when I told my best friend that I was going to do the Prove 3 trial he changed the topic and acted like I was opting for some kind of elective cosmetic surgery of something. He didn't want to talk about it further.
I've shared my HCV status with very few people and how my wife and best friend reacted really confused me and hurt. Last year I had another best friend die of brain cancer that took about a year between diagnosis and his death. I called or wrote him several times per week and made several out of state trips just to touch base and make sure that he knew what his friendship meant to me.
So, as I start into the Prove 3 trial I''ve said very little to my wife about how I'm feeling and pretend with my friend that I'm not even going through treatment again. I'm not doing this our of anger but more out of confusion.
Have any of you experienced these kind of reactions from loved ones and how are you dealing with it?
Mike
I was looking to see if someone posted that poem.
That was from a posting to cheer me up when my husband was being a bugar. It's
a little depressing,but it's true. I let my husband read that. What a slap in his face to realize what we go through.
A perfect poem. Helped me to know my pain was normal and that I wasn't the only one. Some get lucky, but so many aren't.
Thank you
Missy
That was from a posting to cheer me up when my husband was being a bugar. It's
a little depressing,but it's true. I let my husband read that. What a slap in his face to realize what we go through.
A perfect poem. Helped me to know my pain was normal and that I wasn't the only one. Some get lucky, but so many aren't.
Thank you
Missy
Gee, it must be tough living with someone who is probably in denial about how bad you feel. My husband is supportive though he's having a tough time with my emotions.
Two weeks ago I had a huge argument with my sister. She is a social butterfly and always tries to get me to participate. So I've tried to tell her, unlike others close to me, just how badly the side effects of tx are. She just couldn't accept it. In her mind, I am fine, I couldn't be sick.
SO when she told me she needed me to housesit for her and check in on my mom, while she went to Italy for 3 weeks, I lost it. I went ballistic, asked my sister if she would be asking favors of me, if I was undergoing chemo for cancer. AND my doc says this is what tx is like.
It is difficult. My friends are great but for the most part, I've become a hermit. I just want to be left alone, grow my flowers and read my book. I hope you can find a way to reassure your wife while letting her know that you need her support. Best of luck. OH
Two weeks ago I had a huge argument with my sister. She is a social butterfly and always tries to get me to participate. So I've tried to tell her, unlike others close to me, just how badly the side effects of tx are. She just couldn't accept it. In her mind, I am fine, I couldn't be sick.
SO when she told me she needed me to housesit for her and check in on my mom, while she went to Italy for 3 weeks, I lost it. I went ballistic, asked my sister if she would be asking favors of me, if I was undergoing chemo for cancer. AND my doc says this is what tx is like.
It is difficult. My friends are great but for the most part, I've become a hermit. I just want to be left alone, grow my flowers and read my book. I hope you can find a way to reassure your wife while letting her know that you need her support. Best of luck. OH
I think illo is on to something when she mentioned that your wife may be scared about dealing with your illness along with your childs. Having a sick child is a 24 hour physical and psychological drain. Not being sure how your husband who has always been there to help may be feeling at any given time and thinking back to the time you treated before may have her very frustrated. We all know this is a day to day thing as far as how we feel and what side effects we are experiencing at any given time. So many people are so uninformed about this disease and the treatment. People, especially spouses and friends can be so sensitive to change in routine and have different ways of dealing with it. Your treating again brings a change in the way things have been and maybe with time they will adjust and be more supportive.
I am going thru the same stuff myself. Well, not yet, but I foresee it. I start tx on June 8th. The guy I have been seeing for the past 1-1/2 years seems to think that tx will not be bad at all. oh my god! I tell him the stats don't lie. He says you may not get this side, you may not get that side. I know that but I also know that I most likely will have sides, I am not above all that.
Seems like people just don't understand what a person goes through, physically and mentally. To be totally honest, I AM SCARED TO DEATH!! I know I have a lot of friends and they say they will be there but I am also scared that they will be around for a while and then not call or stop as often as stated above. Maybe I am a pessimist?????? I guess you have to be there to be there!!!
Seems like people just don't understand what a person goes through, physically and mentally. To be totally honest, I AM SCARED TO DEATH!! I know I have a lot of friends and they say they will be there but I am also scared that they will be around for a while and then not call or stop as often as stated above. Maybe I am a pessimist?????? I guess you have to be there to be there!!!
You said it right on...
The first 4-6 weeks was the 'honeymoon' period where everyone offered their support. "How can I help..just let me know what I can do..I'm there for you...just call me for anything".
I remember that every weekend my mother would come and make me a big cup of tea and english muffin (with butter for fat!) and ask oh is there anything anything ANYTHING else I can do for you?
By the end of the honeymoon period I was lucky if we had tea or muffins even in the HOUSE!
Friends get VERY tired of being told "No I really can't go" or of you just totally ignoring the phone on the weekends which oftentimes you have to do just because you seriously don't have the energy to talk.
It gets VERY lonely having this disease that assists you in feeling like a pariah - but when all THAT starts happening on top...it's too much for anyone.
I just can't imagine being able to continue on with treatment as long as I did WITHOUT the support and encouragment that was missing in the outside world that we get in here. Not that people don't CARE they just get tired of dealing with it, while we continue to have to.
Calling the beginning period the "honeymoon" period was brilliant and I think if more new people knew this is very very VERY common...it would help them deal with their own families a lot better.
Thanks Jack...another good expression for us heppers!
The first 4-6 weeks was the 'honeymoon' period where everyone offered their support. "How can I help..just let me know what I can do..I'm there for you...just call me for anything".
I remember that every weekend my mother would come and make me a big cup of tea and english muffin (with butter for fat!) and ask oh is there anything anything ANYTHING else I can do for you?
By the end of the honeymoon period I was lucky if we had tea or muffins even in the HOUSE!
Friends get VERY tired of being told "No I really can't go" or of you just totally ignoring the phone on the weekends which oftentimes you have to do just because you seriously don't have the energy to talk.
It gets VERY lonely having this disease that assists you in feeling like a pariah - but when all THAT starts happening on top...it's too much for anyone.
I just can't imagine being able to continue on with treatment as long as I did WITHOUT the support and encouragment that was missing in the outside world that we get in here. Not that people don't CARE they just get tired of dealing with it, while we continue to have to.
Calling the beginning period the "honeymoon" period was brilliant and I think if more new people knew this is very very VERY common...it would help them deal with their own families a lot better.
Thanks Jack...another good expression for us heppers!
Congratulations on getting into the PROVE III trials. I am excited for you. IT is a major thing and I am sure you are excited. Have you explained to your spouse what an impact this may make on the hepatitis community? Have you shared the excitement about perhaps only dointg 24 weeks instead of 48 or longer (not that you personally will be doing a short course)? It might be that her thinking would just be to wait so that may backfire but I empathize with you and agree with your decision.
I think we may minimize the impact of treatment on those around us. After 56 weeks of treatment, my hubby was not anxious for me to begin again (I have decided to wait a year). It did affect his life and lifestyle. There were so many things we couldn't do together anymore -- yard work being one of them.
I think treatment is just so darn long that it is hard to figure out what to say to those who are treating. I chose not to tell my office except my partner. I didn't want them to ask about my health every day and wonder what to say.
It will probably get better once you are treating and she adjusts to it again. I do suggest telling as few people as possibel, though.
frijole
I think we may minimize the impact of treatment on those around us. After 56 weeks of treatment, my hubby was not anxious for me to begin again (I have decided to wait a year). It did affect his life and lifestyle. There were so many things we couldn't do together anymore -- yard work being one of them.
I think treatment is just so darn long that it is hard to figure out what to say to those who are treating. I chose not to tell my office except my partner. I didn't want them to ask about my health every day and wonder what to say.
It will probably get better once you are treating and she adjusts to it again. I do suggest telling as few people as possibel, though.
frijole
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