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80575 tn?1207132364

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

42 Responses
Avatar universal
Hi Mike,  How terrible difficult for you.  I'm sorry to hear that they don't listen or understand.  Denial.  It must be overwhelming for your wife to deal with your child's illness and now yours.  Do you think she may be scared at the burden ahead of her?  It is quite a burden.

When I started a few weeks ago, my husband was drilling holes to fertilize a huge tree in our bkyrd.  I was outside and he asked me to bring the wheelbarrow over to help.  (I love yardwork and always did a lot of it) He wasn't thinking.  I told him I couldn't, but could help if he brought it over.   He got a little 'pissy',  but came in side and apologized.  At that moment, he realized what this stuff can really do.  Since then he has been incredibly understanding.  

I don't think people really understand what it's like, and why we would even think of subjecting ourselves to something that would make us feel this way.

Maybe ask your wife how she feels.  I'd be overwhelmed.  But I really don't know what's going on in her head right now.

Best of luck with the Prove 3 and I hope the two of you can successfully navigate these rough seas and get thru this somehow.

Keep picturing that end result of being SVR!
179856 tn?1333547362
I'm very sorry Mike - I don't know why some people just don't get it and when they don't it seems they don't get it at all.

I have to admit that in my bad riba rage days I used to think "I hope YOU get something like this then let's see how YOU feel and how well YOU do!" at times.  Of course I don't wish a disease on anybody but in anger I would think that anyway.

That is why this group was so important.  Everybody understood.

Can I ask if you've asked your doctor to speak with her and explain really and fully how bad tx is?  Is there a "real" hep support group in your area maybe so she could see that others have a hard time as well and maybe start to understand?

It is very sad that you have a chronically ill child - BUT that does not lessen the fact that you too are ill.  Not a bit. Everybody's pain is as bad as the next guy if you know what I mean.  Meaning when it's YOU it's BAD even if the other guys is bad...yours is just as bad to you, you know?

I'm sure you've tried talking about it - there must be a solution that could help and I just know one of the brilliant loving kind caring guys in here with have good advice.

Since you are in the "pouring your heart out" mood today...I just wanted to make sure you had a reply right away.

It's never a bother when you want to share - that IS what we ARE here for, right?

Debby
Avatar universal
In the begining I had some understanding, as time marches on I have found that its better not to complain to those who don't really know what you are going through. My hubby plans stuff etc. and sometime I think he forgets how hard I push myself to be somewhat normal? He has actually walked out on me on injection nght and did not return home. He has been here for me but I have to remind him sometimes I just don't feel well! As for my friends ,well in the begining I had so many offers for help etc., now I don't talk to anyone. No one calls to see how I am, Haven't talked to anyone for months. I am nearing the end of tx and I plan to move and start all over. Best  of luck :)shelly
137025 tn?1217764741
No one can understand, not unless you've done the deed.  I experienced the same reactions you have and felt like  "I needed to be quiet" about the sides, but I'm not sure that is the best way to cope.

A very good doctor told me finally to find a counselor that "belonged to me and only me" so that I truly had my own person to ***** to.  It helped me more than I could say.  

Good luck to you and here's hoping for a few moments of feeling kinda good about the hard work you are doing.

Disturbed pixels forming encouragement being sent to ya!

Willow
137025 tn?1217764741
No one can understand, not unless you've done the deed.  I experienced the same reactions you have and felt like  "I needed to be quiet" about the sides, but I'm not sure that is the best way to cope.

A very good doctor told me finally to find a counselor that "belonged to me and only me" so that I truly had my own person to ***** to.  It helped me more than I could say.  

Good luck to you and here's hoping for a few moments of feeling kinda good about the hard work you are doing.

Disturbed pixels forming encouragement being sent to ya!

Willow
Avatar universal
just wanted to add that I have been seeing a shrink since begining tx and it has helped tremendously to just be able to talk about all that is going on. I do believe you need to have someone to go to especially when you are having a hard time. I also agree that a support group could be good too!
80575 tn?1207132364
Thanks guys.  I'm not usually an emational guy but I'm in somewhat of a funk today.

When I was first diagnosed with HCV I remember finding this forum and thinking, " Wow...I want no part of that lean on each other's shoulders group".   My thinking then was really wrong.

In ignorance I was going to breeze through the 48 weeks of SOC treatment without all the crappy side effects, because I've always been a distance runner I'd just run my way through treatment, be done with it and go about my merry life.

Well, obviously things didn't quite work out that way and here I am four years later, one failed treatment and working on a second treatment with a drug (VX-950) that I believe holds much hope for all of us.

I come to this forum to receive and give information.  Also for support that I'm very thankful for.

Not sure what to do about the attitudes of my wife and friend.  It's strange because I communicate openly with both but for some reason they seem to think this tx is kid's stuff.  Maybe if I had cancer and was going through chemo it would sound more familiar to them.  I don't want anyone's pity, just understanding.

BTW....my son is doing very well.  He has Cystic Fibrosis.  What's ironic is that Vertex has a fast tracked drug code-named VX-770 for the cure of Cystic Fibrosis that is moving into Phase II clinical trials right now with great results.  It appears to correct the ion channel which is the basic problem.

Thanks for listening to me today.  Tommorrow will be my day to listen to you guys.

Mike

Avatar universal
Unfortunately, what you describe happens all too often. I know it did with me, my family and my "friends".

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".

Later people seemed either not inclined to talk about it -- they would change the subject right away -- or stopped returning phone calls. As to "friends" -- probably activity partners is more of a suitable phrase for most, and since I was unable to do any activities -- other than couch sitting -- those relationships disappeared. People just don't *get* what a chronic illness can be. It's not just a visit or two in the hospital and a trip to the drug store. It goes on and on and on.

I don't know what to advise. Certainly some here have noted that they have a great support system with friends and relatives, but again, your story is very common.
I guess you can hold onto the thought that once treatment is over and the "old you" returns that friends and family will be back, I found that out. Thing is how many of them do you really want back. Sorry for the cynicism but wanted to let you know that you're not alone.

All the best,

-- Jim
Avatar universal
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.
166496 tn?1236182312
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!!!
179856 tn?1333547362
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!

Avatar universal
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
80575 tn?1207132364
I've made the connection between my son's illness and now mine.  We've discussed the topic but my wife is a pretty stoic woman who doesn't easlily show her feelings. Maybe this is her way of dealing with it,  It's just really out of character for her to behave this way.

I think that she looks at me and I look healthy and am very active both physically and mentally.  The mental thing of tx is the hardest for me.  I had my driver's license renewed well into treatment the last time.  I had that Interferon-glazed look.  Several times at airports, TSA women have kidded that I'm much better looking in person.  The Ribaviren didn't bother me much but Interferon absolutely sucks.  

I pray that this is the last time that I have to treat.  I also pray that the clinical trials will pave the path for a cure for everyone.
183955 tn?1296403445
I didn't read any of the answers yet, because I was feeling so alone and just like you today...this is what I wrote in my blog this morning...you'll get the gist and understand that you're not alone in this...we're all in this together...you may want to let your wife listen to Llama Lashes and Grumpy Old Gits...I sent it to all my friends today too...figured, can't lose what you really don't have anyway...lol...maybe they just need to be educated more???

http://video.google.com/videoplay?docid=-5858401322519918178&hl=en

Copy of myspace blog

Well, how did this week go......do you want the real version, or do you want it sugar coated???
Monday I went to the researchers and was feeling OK...Cousin Fran came with me and my hubby...hubby runs out every 45 minutes to put the money in the meter, Fran is there with me as my support, and she has really been a Godsend.
OK...so I tell them my symptoms, I ask for copies of my blood tests, and for a copy of my liver sonogram that I had done the week before...
I'm not as happy with my blood results this week, my viral load is down to 289,000 which is a 1.33 log drop since day 1 of my treatment....some people clear by their 4th week...I guess I'm not one of them...but there's always hope...I will clear this virus!
...after my shot on Monday night, I went to bed to watch 24 and fell asleep before it ended again...no problem, I don't know if it's me or what, but I really have no patience for that show this year...it's not keeping my interest at all...but I'm not here to write about 24...lol
I woke up Tuesday morning with absolutly no, and I mean NO energy at all...OK...I can handle this I say, and I try to get through the day...I force myself to go to Costco the main reason being that I can get one of those roasted chickens, and some prepared foods because I can see this week is gonna be a killer to get any cooking done. That night I heated the chicken in the microwave, put it on the table, took the knife in my hand and proceeded to cut the chicken...to my surprise, after the second cut, I was all out of breath...geeze...it's been like that all day...do a little something, and loose all energy throughout my body....what else is there to do next but CRY...and cry I do...how the heck can we do this if I can't even cut a piece of chicken???
Oh, I guess you say "WE" oh, there's somebody else there with you...you have help then???
Yes, I have a husband, but he's sick himself, and is a great help with lots of things but cutting chickens isn't one of them...
OK, it's only  Tuesday...I can do this...I am strong...I am a survivor...
All that sounds great, and somedays I feel like that, but most days I just feel like crying the last few weeks. Ohhhhhhh, the meds must be doing their job????

Take Tuesday, and multiply it all the way up to Saturday...that was my week...well, not exactly, because Wed I have to take my hubby to the doctors in the City...another failure on my part, because when I park the car and we walk to the doctors office, I get there and I think I'm going to pass out...all I can think about while we were there was the walk back to the car, and if I will make it...I made it back, but that was the straw that broke the camels back for this week....it put me in bed until Saturday morning...of course there was cooking in between, all done by me in 5 minute increments...why such small increments you may say...well, that's all I could sit up for each time...
Let me not forget the wonderful news from the endocronologist...I'm diagnosed with Thrroiditis and  Hashimoto's Disease...I don't even have the energy to google it...she said to continue with the hep C treatment and to see her in 3 months, I don't need to be treated for it yet....
OK and if that don't top the cake add in a call from hubby's doctor, oh yes, he had a thyroid sonogram last week, he has a nodule on this thyroid...so the doctor proceeds to tell me that he needs to have a thyroid scan done because the nodule is solid and could be cancerous....
Do you understand how I feel yet????

Saturday I asked my hubby to help me change the bed, and we were just about done when the bell rang...GEEZE I say...as he goes to see who's at the door...all I wanted was to finish the bed, so I could lay in it, and this is holding me up here...

Then my prayers were answered

OMG it's Michael...my son from California....OMG....it's Michael behind that big bouquet of flowers....I held on to him, and cried until there were no more tears...this was just what I needed, I felt so alone the last few weeks, and I was thinking it's the meds making you feel that way, but in reality, it wasn't...I had no energy to pick up a phone...and to reach out to the outside world.
Enough about that....lets get back to my wonderful surprise...

Michael stayed until Monday night, got some lunch for us on Saturday, cooked for us Saturday night, drove us to a party on Sunday...and soothed my soul for the time he was here...I feel renewed! I can't thank him enough, and he will never know how far to the end of my rope I was when he delivered those flowers to me that day before Mothers Day!
Amen

Sorry for the long post, but I had to get this off my chest today too...
96938 tn?1189799858
Tx is tough on everyone.  On my second go 'round the family and I have subsided into a "don't ask, don't tell" attitude.  It doesn't do me any good to *****, whine, moan or complain - they just don't know and can't fathom.  On their side, this **** has been going on for so long that I'm slowing them down.  It's a lousy situation sometimes and I'm in the 'dog days' now in which there's little to want other than for it all to be over - again.
Avatar universal
When I was sick at home watching TV I surfed to a channel with a preacher on. He was looking straight at me when he said:

"You can get sick - but don't stay sick too long because people get tired of it. When you first go into the hospital people visit and send flowers and call you all the time but after 6 months you find yourself all alone because no one wants to be around you - they get too depressed being around you".

There I was watching TV and sitting all alone and I knew this preacher was on to something. That's just the way it is sometimes.

Mike
Avatar universal
Thank goodness for forums and support like this one. No one can ever know the fear & hardship we confront to do this tx.  No one.  We all picked one heck of a path, didn't we?
80575 tn?1207132364
Don't ask; don't tell.  That may just be the solution.

My hope for Round #2 is to be done with this **** in 6 month which seems a lot more doable than 48 or God forbid 72 weeks which I've read a lot of here.

I'm feeling fortunate after reading the post above from the lady who had problems walking to her car.  This time around I WILL FORCE MYSELF to walk ten miles per week on  the treadmill, do or die.  Off tx i run 15 miles + per week and it always clears my head and body....my theory is walking will suffice during tx.
Avatar universal
hi mike - ditto to what everyone said... when i told people i was going to re-treat, there was a variety of responses.  i have learned to share only with people who i feel are "positive" about my situation.  i have several close friends i can talk to, a few people at work, and fortunatly a supportive husband and sons'.  i don't answer my phone much - cause i don't want to keep being asked "how are you feeling?" - i let the machine get it and then return calls when i feel up to it.  luckily my friends understand - they know when i don't want to talk and they respect that.  the tricky part of this whole treatment thing is - that for the most part, most of us look good - the other day i stopped in to work and my boss said "you look fabulous!" - i jokingly said "well, too bad my insides don't feel as good as my outsides look!", with that, he gave me a hug.  so, my suggestion would be - find a few people you feel comfortable with, who fully understand what you're going thru, and reach out to tham when you can.  you're not alone in your feelings.
peace & blessings,
w.c. missy
85135 tn?1227289772
All you oldtimers may have seen this before but it's been over a year and has bearing on this thread. So here goes again.



Having Hepatitis means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about HCV and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand ... These are the things that I would like you to understand about me before you judge me...

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about life and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing. Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what Hepatitis does to you.

Please understand that HCV or HBV is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally. Please understand that "getting out and doing things" does not make me feel better. Telling me that I need a treadmill, or that I just need to loose (or gain)weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the excercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously HCV deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity.

Also, Hepatitis may cause condary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression. Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). Hepatitis does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with hepaititis then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with Hepatitis if something worked we would KNOW. If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.

In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outsideworld... if you don't come to visit me, then I might not get to see you... and, as much as it's possible, I need you to understand me.

Authored by Bek Oberin
Avatar universal
people have such a lack of understanding - despite explaining the disease and what to expect. i thought this would have garnered some kind of understanding or support, i felt very alone and misunderstand, and also found the quiet darkness of my room preference to anything.

i also was discouraged from talking complaining or any other manner of speaking about my situation.  i began tx w/o support from this forum (though reading prior to beginning tx, i joined the forum at about 3 mths in.  i really needed the kind of understanding that can only be obtained from others in the same situation.  i thought about therapy, but i don't think my energy levels could have taken on another obligation.


sunspot - that was a wonder post. thank you for sharing it.  i would like to print that one out. despite the fact i a 5 wks post tx -  the way i feel on any given day is still so unpredictable.  just like your post.

thank you all for being here.
163305 tn?1333668571
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
Avatar universal
were here for ya buddy and each other. Yup!, same reaction from sisters. Ho well ****'em I'm living for me cuz me is the only one I got.

jasper
Avatar universal
I'm so sorry that you have had little or no understanding from your wife and best friend re: your treatment. It's very hard for many people to understand what we are going through that's why these support forums are so wonderful.

My younger son and his wife wouldn't even let me hold me new grandbaby for a couple months because they thought I was contagious. I had to have the doctor send them all this stuff on how you get hep. C. You cannot get it casually. Many people have hep. B and C mixed up or Hep. C and HIV.

There are brochures at the doctor's office you can give your wife and friend, etc. That explain better what we are going through and why sometimes we feel so badly. I hope you can get some of them. This is not the flu.  
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