hypochondria

[roostermom]

I am a relapser, who recently found out my daughter has hep c, so needless to say I am crushed. What I also just found out is that my best friend thinks I am a hypochondriac. I know you can't see this illness, but that doesn't mean there are a miriad of symptoms we live with on a weekly if not daily basis, and they come and go. I work full time as a bond trader, take care of my household which includes a husband and two kids, and run my mothers household, including all finances and managing two full time live in care givers for her with out taking sick time. I don't want to sound whiny, but have others experienced this with their friends or family? I really thought she understood what this all meant, but I guess I was wrong. Feeling a liitle hurt, emabarassed and let down. Any thoughts?

[IAgirl]

I found out that i have hep c about a month ago! i went to the doc today and found out that i have gyno type 1. she said that it is the hardest to treat. i go back in about a month for a biopsy to find out how bad it is! i have a 2yr old little boy whom is my whole world! I am scared. it is hard for me to even go to the store with out feeling like i am dif from everyone else! Does anyone have any advice?  thanks

[roostermom]

Thank you all for your comments. As always, they are extremely helpful.

[Forseegood]

I'm about to start treatment myself and I think I'm a bit of a nervous wreck...and I haven't been meditating lately to help with my somewhat obsessive nature, too much caretaking and defending, etc...

So I need to get back into a better place with my meditating, etc...I'm a bit of a control freak (maybe some people here can relate?) and the one thing I always have to give up - is my
thought that I can control other people....because I know down deep I can't...I can't really control other people, places and things. I can help sometimes, or try to show people things that might help situations I'm in - or they are in....

I'm really sorry that you are having this trouble with your friends, etc...I think many of us can relate to you...

In my own situation in particular, I've been having a few more symptoms of this disease lately, symptoms that I haven't had in a long while....so I have to give up my control over my body right now, and just try to get into a healing place...Oddly enough though, I look pretty good...my hair has never been in such good condition, and I still have lots of it, for my age at least...my skin looks good....I still have some muscle tone from my walks, etc.

On the surface, I don't look sick at all....so if other people think this is all in my head, then I have to kind of..... let it go....Letting go has always been a challenge for me, at least some of the time....What counts is, what I know to be true. Luckily for me, I have reasonable people around me, who believe, although I look pretty good, I'm not.

I could be a whole lot better...maybe I will be someday....I have to let go of the results right now, and just focus on my path at hand. I have always thought this letter is a good one to give to the "doubters" in our lives...I hope it does you some good...


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.

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.  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

[ladywhy]

This is such a harmful disease and treatment
!rst: There is the bias...and fear...how'd ya get it! Lepper/Hepper mentality out there
2nd: The myriad of real symptoms, physical as well as psychological, why some experience more difficulties during tx.
3rd: There is so much still unknown reg. tx..dr's opinions...why some clear..others don't...
4th: Possible chronic illness from tx. (on top of still feeding the critters if no svr)
5th: The lack of understanding...and the isolation that often comes with this virus
6th The isolation
7th The isolation
Oh, did i say that already.... ;}

and the sadness.....

[CMcH]

I am about to start TX in 2 weeks after the holidays. My husband always minimallizes everything and the first question he asked after telling him about TX is do people still have sex? So I sent to him, my mother that is close by and helps with kids and one compassionate friend a copy of a post on Friday when people were talking about dreading the shot and the sides. This will probably freak them out but better from someone else's mouth than mine. I don't plan on doing that often and the header of the e-mail was this is what frightens me.I am quite sure when I am on TX they will not want to here about all my problems. When I realized lately that I was always feeling bad(RA, can barely use my hands) and trying to explain to my family what I was going through it was depressing. So I try to do the opposite now and tell my husband when I feel good. It is only a couple times a week but I will lean over and whisper in his ear "I feel good today" or I have even called him on the phone and told him. This always makes him smile and remember there is still some of my old self in there. I know this times will be fewer and further apart on TX but no one wants to hear complaints all the time. They will start dreading asking how you are. As mentioned before people don't really want to know all the details. I went to a XMAS party last night and all my old girlfriends told me how great I look. i took it in and savored it without mentioning the pain I feel everyday.
Hang in there and if you have to send them a post where others are complaining about the same things so they know your not alone in having all these sides.

[pitter]

oh this is a nice side of you...... I like it better than the debating side of you...peace...

[mremeet]

I've never had the "you're a hypochondriac" problem for one simple reason: I never told anyone I had HCV and told almost no one as I was going through treatment. I'm the anti-hypochondriac, unless I'm here on this forum of course ;-).  But not everyone carries the load of HCV and its treatment on their shoulders alone as well as others. Women I think especially need to discuss their feelings with their friends, where us men are often more comfortable with just staring at the TV instead. I wouldn't worry about sharing and discussing all your HCV related problems with your friend. If she doesn't have it herself, she'll never be able to truly relate to your experiences. Plus it's not fair to expect her to. If you need to discuss the HCV hardships in your life for your own emotional well being, then do it here. And see about joining a local HCV support group, they have them all over the country. I've never been to one, but apparently it's a sort of group therapy thing where everyone sits around and ******* about HCV. Sounds like fun huh? lol But seriously if all the HCV stuff has got you down I could see where bouncing experiences off of other real people who are struggling with the same thing would be very cathartic. And after dealing with it in this positive way, you may pick up a new friend or two who truly DOES understand. Plus that'll let your other friend who doesn't understand off the hook. Then you two can concentrate on more important things, like shopping and complaining about farting husbands, for instance.

[pitter]

I too can attest to disappointing friendships. I don't try to have alot of friends anymore...if it happens -good - if not , that doesn't matter so much anymore..I have my faith, and my husband...I do get a little lonely sometimes, But I find if I try to help someone else then who may be in need,(not that I am THAT GOOD all the time either)) but when I do that , then I feel better...It is sad to say , but most people are into their own thing...and this society today has produced overworking moms and dads, and I think they are stressed out and don't have the capacity to take on another s problems...they are probably allready on overload...and this is becoming a more and more selfish world,,,So I am careful where I go when I need support...Sometimes there is no where to go when I need it,,,even in my own family ...so for me,  I go to The Father..and I am never disappointed .It is hard tho sometimes to go there...it is hard to have faith for me too.
don't feel alone. You are not...this forum is good, people understand how you feel.
take care, Pitter
I have told some people that I have hepc, I am not treating yet,

[Lonestar823]

Try doing what I did.  It doesn't take long for most of us to start looking "other worldly" on treatment.  At least it didn't for me.  I never told anyone but my husband and one of my brothers when I was on treatment.  And to be honest, I told them very little.  Of course I'm sure they shared with others.  It's human nature.  One by one, month after month I began to look as close to death as one could before actually dying, friends and casual acquaintances  started questioning me but I always remained very vague and mysterious.  After hearing little comments made towards others about this disease, I realized most of the questions were curiosity and gossip.  I never took any bait.  I didn't complain.  I didn't ask for anything from anyone.  I kept to myself and depended only on myself.  You can bet the curiosity will kill your friend if all of sudden you just shut up.  Avoid any conversation that mentions the hep c or your daughter.  Simply say, it's too private to discuss, but thank her for asking.  End of discussion.  When asked how you feel, say, Wonderful, thank you, You?   You ought to have seen some of the looks I received when I'd respond like this.  ; ]

[wyntre9]

The diner I've been frequenting since the move 6 months ago has a very nice, laid-back, low-key staff.

I got to talking with one of the waiters the other day and he says to me, so "Are you a lady of leisure";  in other words, I have odd hours and don't seem to have a full-time job.

no, I said, I've been on chemo for the past 13 months and still have 5 months to go.

he looked at me in astonishment and said he would never have imagined I'm not perfectly healthy.

People don't/can't/won't/ are incapable of or refuse to understand.

Reminds me of something someone once said to me when I was remarking about unfair treatment from another person and was told, "If people realized how infrequently other people think of them they'd stop worrying about what anyone thought of them".

So true.

Jim has a good point.  "I dumped some close friends during tx because of experiences like yours. Only problem is you probably end up replacing them with others just as shallow."

I'm trying to avoid that.

wyntre

[jamimapuddle]

I have been getting that attitude from alot of people too.  I think that it might be easier for them to think that we are being hypochondriacs then thinking about us being genuinely sick and the implications thereof.  

[BThompson4]

My daughter called me a fat, lazy, a-hole during week 72 of treatment.  Most people are not capable of understanding what hep c and tx can do to you.  

[roostermom]

I am really tempted to show my friend the list of symptoms that someone with Hep C lives with, and ask for a slower rush to judgement. She is a dear friend which makes this revalation more surprising to me. SHould I just let it go, or show her the list? I am having a hard time knowing what to do because my emotions seem to be driving the bus right now.

[jmjm530]

roostermom: Any thoughts?
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Going through treatment has lowered my expectations of people. I think "fair weather friends" sums up most. I dumped some close friends during tx because of experiences like yours. Only problem is you probably end up replacing them with others just as shallow. I'm sure someone will drop by with something more instructive. "Whiny"? Given all you're going through, you sound heroic to me.

All the best,

-- Jim