An Open Letter To Those Without HCV (Hepatitis C / Liver Transplant & Biopsy (Hep C) HCV Blog)

Hi Folks,

I wish I could take credit for this 'open letter' which describes almost exactly how most of us feel who are trying to cope with the effects of this virus, but I can't.
I found it on  the very excellent 'Hep C Nomads' website which is a forum for those who have HCV and their carers.
For me, the Hep C Nomads site has not been just an excellent source of information but more than that, I have met many courageous and inspiring individuals who helped me through some of the hardest of times of my continuing fight with this disease. I continue to be in their debt.

For anyone who has Hepatitis C or is affected by this virus, I would strongly recommend that they register with this forum. Links to their site can be found by clicking on the links on this page or by clicking on their site and facebook links & logo's to either side of this page.

Take care everyone... Ian

An Open Letter To Those Without HCV (Hepatitis C Virus)

Having Hepatitis C means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disease or the disability the treatment causes and their effects, and of those that think they know many are actually misinformed. 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 HCV and its treatment doesn't mean I'm not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school 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. I may be tired. I may be in pain. I may be sicker than ever. 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 five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either.

Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything that I do.

Please understand that HCV and its treatment are 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 scold me when I'm ill by saying, "But you did it before!" If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. HCV (and if on treatment) may cause a secondary/reactive depression but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it that, I would.

Please understand that if I say I have to leave/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 doing something else more exciting. HCV does not forgive their victims easily.

Please understand that I can't spend all of my energy trying to get well from my chronic illness. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness and its treatment.

If you want to suggest a cure to me, please 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 many people suggest one at one point or another. At first I tried to research or try them, but then I realized that I was using up so much energy looking for answers that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability 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 similar and different chronic illnesses and disabilities, and if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better might not happen at all. People with Chronic HCV have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens. But most importantly, I need you to understand me.

by Beth Oberin via Hep C Nomads