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140622 tn?1190098929

Family

Hi,
I'm on week 23 of 72 and over Christmas I tried to stay in my room so as no to get upset around my family. My brother thinks I blame my irritability and anxiety on the meds too much so he can be a creep to me and not feel guilty about it.
This is my second go-round and a lot of my friends stopped calling (cause I'm the sick one)  so I'm pretty isolated and signed up for therapy and even she doesn't think I'm sick. And she thinks my irritability and anxiety are not drug induced.
It makes me want to go into my room and not come out again until I'm finished with the treatment.

Family members think I should be able to to things like I used to they always say "Oh, it's easy just do this or do that" I have to remind them that most things were easy for me before HepC and they think I'm just trying to get out of helping.
11 Responses
Avatar universal
Sorry to hear you are having a rough time with your family. I think the drugs in themselves make us kind of asocial (at least me) so that I prefer being by myself. Less people to get irritated on then. I have more or less stayed in my house the last 15 months now. I guess it is hard for others to understand that we are sick for so long. They just don't have that patience in their understanding. My youngest daughter says she cannot even remember how I was without medication, it was so long ago.

How is your hemoglobin holding up? I remember you had transfusions. Hope all is well.

I have added you to our list of extenders. We try to keep track of the 72-weekers on the board and see how they do post tx. Please keep us informed and best of luck to you!
Avatar universal
Seems like your family just dont understand anything about what you are going through, maybe you should get some pamphlets and information about the treatment, symptoms of hep c etc, and show it to them.
If you go the a site called HepSlayer, there is a letter that is there called ' A letter to people WITHOUT HCV', it is brilliant, you should print it and give your family and friends a copy of it.
Take care of yourself, get out and go for a walk, dont stay in your room too much, as this will add to the depression and anxiety.

Linda
Avatar universal
Note: This letter is one of the best found written for people without Hepatitis C.
Please feel free to print this letter and give it to those that need to understand.



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
233616 tn?1312787196
it really sucks, and sometimes, when folks don't get it...it makes me wish they culd just have ONE DAY of what this Rib=a-virus does...it tears down all that is you, physically, mentally, and emotionally. Everyday feels like a hill you spend climbing up, only to slide down further by days end.

I guess the part of grief is t resign that they won't get it.  re-emerge when it's over and meanwhile isolate as much as you can for the peace that brings.

Also, you might want to leave a succinct list of riba side effect, INF side effects. Hep C side effects in a one page document. Hang in on the fridge, leave it in the bathroom, post it to your bedroom door.  Use some big medical lgo at the top of the page  so they'kll realize you are using an authoritative source.

that might work better....otherwise, I get the daily barrage..."what's wrong" and like I really don't want to explain for the 500th time what my sysmptoms are....talking about them only makes them worse....but the fact that is is all internal means some family just won't get how sick you are until you are wheelled into an OR for complications or a transplant. Meanwhile, chin up....funny movies, and get a lock on your door and use a d not disturb sign when you really want down time.

It's such a mixed blessing having caring family....some have none, and thats awful, but it can be hard being doted over by a hang wringer or group of them too. It's like they want to focus on you being sick, and you are trying like crazy to keep your focus away from the pain and sides that agggravate and daily grate at skin and nerves and sinews.
"tell them, I have HCV, HCV does not have me.....but right now I need soft comfort food for my body AND my mind and especially my emotions...which means a little kindness goes a long way....but don't smther, and for sure don't judge."
250084 tn?1303307435
hippygem....just went to that site (before I saw you posted the letter!)
Good letter!

B-Bunch.....really sorry for you in this. I have had a long time friendship 'change' in this, because of seeing 'who' they are, and their whining over, really, NO problems in life!
First of all, your 'therapist' is a real idiot! REALLY! ANY 'therapist' should research or look into what these drugs can put you thru before making that comment! To say it is not SOME of the cause of your feelings is just plain ignorant. This stuff is VERY hard, VERY emotional, makes us VERY ill, often EVERY day! Like Zazza...being alone has been best for me, with company that understands when stopping by.
  Don't let anyone tell you what you feel, what you 'should be able' to do.  Print some post, print some info., set them all down and TELL them how this can be, present the facts on paper and ask for more understanding in this. I see that you are starting tx for the 3rd time?? Have they not seen this before? Before tx I sat all down and explained how it may or may not be, my family has been great and I do have the luxury of being 'left alone'. Yours really need to undertsand the physical weakness, illness in this. Like Merrybe said....I have often (ashamed to say!) 'wished' a few could do these drugs for a few mths. (but be okay!) just so they'd know what it's like! There is just no way for them to know, not doing them, but I would ask for and expect some help and understanding from them. MANY of us can NOT do our normal routines, sweeping a floor being a struggle!

  Now I'm mad (especially that 'therapist'!)

I hope it get's better for you, LL
Avatar universal
BB: And a lot of my friends stopped calling (cause I'm the sick one)  so I'm pretty isolated and signed up for therapy and even she doesn't think I'm sick. And she thinks my irritability and anxiety are not drug induced.
-----------------------------------
This hits home for me and I'm sure for so many of us. Rats (er friends) deserting a sinking ship and even medical professionals not getting it. The good news is that the rats (er friends) will come back -- if you want them back -- once you're back to being "you". Being chronically ill, like many of us are on treatment, is a very big education in human behavior.

Hope things start getting better soon.

-- Jim
131817 tn?1209529311
I really got sick of telling people I am sick. So I tended to isolate, as well. Sometimes, I just didn't say how I felt. Those close to us have to get tired of hearing the truth. It's not like they can do anything. The family members that said, "well, what's wrong with you!" Thinking that this should be gone by now, really got me. Many cancer patients don't tx as long as we do. The amount of time it takes to tx and recover is a long long time!  My husband says to some, " you haven't seen Linda when she's well! You didn't realize how much energy she used to have!" Especially to new people that only new me sick. Even John is amazed when I act normal again...it's been so long.  

Love that letter and the other comments too!

Linda
86075 tn?1238115091
guess at 54 I've been on the planet long enough to make some generalizations sometimes, and it just seems to me that many people have been beat down by life a lot, and feel like victims themselves, and they don't like it when someone seems to have a real *legitimate* reason to feel victimized, sick, etc...they get suspicious...also, if they've never been really ill themselves, they don't *know* what that is like, so they
suspect people who say they are ill....whatever happens to them - they extrapolate out to everyone else, what happens to *me* is a universal, and they don't have any "being really ill" references to draw on.......they also might do a little fibbing themselves now and then, so they suspect other people to be fibbing or exaggerating too...that don't LOOK really ill...if you have a broken arm in a cast, or are in a wheel chair, etc...that will give you lots more credibility with many people, they have "visual" references to draw on...

Guess this is a long way of saying that many times we have to deal with *other* people's problems, projections and foibles...when they are judging us...I hate to admit it but I think I could be this way sometimes myself, when I was feeling perfectly healthy.....life can be a tough teacher sometimes! lol....I sometimes used to suspect people who didn't look sick, who claimed they were....(and then, there are hypochondriacs out there, doesn't mean everyone is!).....but then you're telling people you're on chemo, maybe some of these people just believe what they want to believe, try to let it be their problem....

Good thing is, we have these boards, and support groups with other people suffering like us, to use to help ourselves and others...maybe look into seeing if you could attend a hep c support group, or get some phone numbers at this and/or other boards like this...and maybe give some of these people this following letter that's been circulating around for years, oftentimes people believe what they see in black and white print, if nothing else...wishing you well....just my take, here's the letter...

Letter to People Without Hepatitis C

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 exercise 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.

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 outside world... 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



86075 tn?1238115091
just noticed that somebody else posted this letter too, sorry! lol...
131817 tn?1209529311
I don't know about looking good while on tx. There were times I am sure I looked like the walking dead. Pale face, hair sticking up and thin, red eyes, aligator skin, clothes that were the first things you find in the drawer (most likely not matching), shuffling along with hands out grabbing at walls and chairs so we don't fall over. LOL  Nah, a lot of times we do look pretty sick, doesn't seem to make a difference to people around a lot. Perhaps I felt worst about saying I am sick then they did not bothering to ask or continually asking...Dunno!  
140622 tn?1190098929
Thank you all for responding. It made my day.
Sharon

p.s. The blood transfusion went fine but only worked for 2 days then HGB started dipping again so Doc lowered my Ribavirin to 600mg for 2 weeks and added  20,000 more IU of procrit (60,000 total now) and it went up to 12! So of course he upped the Ribavirin back to 1200mg and now the HGB is dipping down again last week it went from 12 to 11. Better than 7.5 which is what it was before the transfusion.
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