Letter to People Without Hepatitis C

I found this on here last summer. Spent quite awhile recently trying to find it again. Hope someone else can benefit from it.

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 to 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

[Fmulder]

I couldn't have said it better myself!

Thanks...

[James10500]

Thanks, great letter

[Frank J. Perrotta]

will add this to my favs...

wont help with most family/friends. most still wont understand. some even suggest going out for a drink!

[Mary4now]

Its nice if people do understand, but if they dont well that is there problem and if it becomes a problem for the hep c patient, we need to find a way around it.

People will be people and there are so few that you can truly count on even then something could happen beyond their control.  

You have to be your own best friend

[Mary4now]

I have met so many people with immune disorders, cancer, RA, undiagnosed disorders, car accidents, etc.  These people do have some understanding and compassion for others.  
Nobody gets out of here unscathed

[Frank J. Perrotta]

just wanted to bump this...

I am passing it on to some of my new docs and others.

f

[Dee1956]

Bless you for this.  This letter says everything I wish I could say to family and friends

[rockymoe]

Great letter I copied and gave a copy to my husband this AM. Also emailed to my daughters. I plan to take a copy to my doctor maybe it will help others. It says it all!

[Dee1956]

Sorry me again, this letter says it all, I wish I could email it to family and friends to try to get them to understand.  There used to be an option that you could email posts but I can't find it anymore.  Brain fog :)
Here's to all of us being UND
Dee

[ann61]

The letter just about sums things up.  It reduced me to tears.  I hope those people who read this who do not have hcv are better able to understand.  Thanks for sharing.

[paddikake]

I find lots of info and forums on treatment and they are so encouaging and informative. Thanks to everyone who shares their experiences here.
What I'd like to ask is what was life like before treatment? Treatment sounds so full of pain and misery. It requires such strength and commitment. I am truly in awe of those who get through it. But am curious about what lead you to treatment. What was your everyday life like before tx?
It occured to me recently how great an actress I have become. I drag myself up and paste on a smile and just carry on. No one knows the pain and the fatigue are so bad that I am just barely able to get through the day. And that rather than enjoying my life at home, I am nauseuos and weak and so unbelievably exhausted. But noone sees that because i am such a good actress. Then when I get really sick and can't "fake it til I make it" I feel like every one it suprised. I don't know just a random thought. Do ya'll try and pretend to yourself and to others that you are "fine"? And then have a bad spell and hit the wall? Just wondering.
I have had so many unpleasant reactions over the years when I would share my HCV with people. I have been shunned, judged, dumped and even outed in public. I work in healthcare and am ashamed to say i have wittnessed this attitude in other providers in the hospital. Ignornance about HepC is the norm. Even among those who should know better. My Phlebotomy Instructor found out and stood me in front of the class and gave them the option of not allowing me to participate in practicing on each other. About half the class avoided me like the plague after that I was hurt and humiliated. This probably why It feels so great to come to this place where there is no judgement only support, info and love! Much Love To You All!

[Dee1956]

I hope you can see this, it might help you

[paddikake]

See what? The letter? i did it is great.