Help me live with Hepatitis C.
January 22, 2012 10:09 AM   Subscribe

How can I live a positive life in light of the HepC? How and when do I tell a potential lover about the HepC?

I am a female, mid-50’s, divorced, diagnosed w/ HepC (genotype 1b) in 2007. Found out when I donated plasma to earn some money while unemployed. My ex-partner, with whom I’ve had unprotected sex for almost all of our 20+ yr relationship, does not have the virus.

I struggle with depression and anxiety and am pretty private about my personal struggles so have shared my HepC status with just a few people. I don’t have much of a personal support network and the only local HepC support group meets in a public library, which is too public for me. Around the time of the diagnosis I signed up with a few online support groups, which were both helpful and very frightening, but have dropped those.

I am leaning towards not doing the treatment based on things I’ve read and heard from people who’ve gone through it and haven’t cleared. I also don’t feel that I have the support I would need and I’m concerned about the potential adverse psychological and physical effects of treatment.

I’ve always had a very healthy sexual appetite but fear I may never be sexually intimate with a man again. I am interested in dating, but fear I would be rejected because of the HepC. The thought of having to tell someone about the HepC makes me feel sick. Of course, I would have to tell someone about the HepC before we even kissed. I know that there is an extremely low probability of me passing the virus along to someone I am intimate with, but my negative inner voice wonders who would take the chance and who would want to become involved with someone with a chronic, potentially deadly disease.

I go through periods of feeling like my life is over. I miss drinking. I don’t know how to move forward with dating. I’ve pulled away from people for a variety of reasons and I feel like I’m hiding something. I don’t enjoy socializing as much because I can no longer drink and I don’t want to say why and it is challenging to not drink. I’m not interested in discussing how I think I may have contracted the virus (if I’m asked by someone I share my health status with) possibly 25-30 years ago.

Throwaway email:
posted by anonymous to Health & Fitness (13 answers total)
Both of my parents have Hep C (and they aren't married so they've had to deal with the dating thing.)

The local Hep C support group has helped immensely. However, given the nature of Hep C, you're in the group with a very ... assorted cast of characters, and some people don't like the company. However, you can get the very latest research (faster than your MD in many cases, which is a mixed blessing) and a lot of sympathetic stories and tools and tips.
posted by small_ruminant at 10:42 AM on January 22, 2012

Of course, I would have to tell someone about the HepC before we even kissed

Well, I am not sure that you WOULD need to do that. HepC is transmitted through blood and sexual intercourse, and the instance where it could possibly be transmitted through saliva seem very restricted: "Researchers found that Hepatitis C was not found in saliva if the person’s viral load was under one million. Additionally, any risk of acquiring infection through salivary contact existed only in the presence of gum disease." via

I think, too, that you can easily go out and socialize without drinking without having to specifically letting anyone know about the HepC if you don't want to. You can offer to be a designated driver, say that you are on medication or an antibiotic or that your doctor advised you to cut down (white lie s that I think aremperfectly acceptable. You could make a joke about it and say, "i can't drink because I'm pregnant!"

I rarely drink because I do take meds that interfere with alcohol, and I will tell you honestly that you are worrying too much about what others will think--my experience is that people really don't pay much attention to what you're drinking, as long as they are having fun. It only becomes an issue if you make them feel bad for drinking when you aren't. So as long as you don't spend your time out with them complaining about not being able to drink, you can go out all you want. This is more an issue of your attitude than anything else.

Which brings me to this: you're depressed because of all this. I really urge you to try to let go of that shame you seem to have--you're sick, not evil. You didn't get this disease because you're a bad person!--and talk to some of your closest friends about this. I think you'll find them ore sympathetic than you anticpate. And if you don't want to talk to them, talk to SOMEONE. If you go to church, talk to your pastor. If you can get an appointment to really talk to your physician and tht will help set your mind at rest a little (because the internet should not be your primary source of information), do that.

There is no reason that you should feel ashamed for being sick. Say that until you believe it.
posted by misha at 10:51 AM on January 22, 2012

Have you had a confirmation test? My neighbor has twice had blood rejected based on a positive HepB screen, and both times has gone in for a confirmation test that shows that she does not and has never had hepatitis. Given your ex-partner's status, I would definitely get a second test if you haven't had one already.

As for the rest of your question: not drinking sucks for you, but it absolutely doesn't have to be a big deal. I know several people who just don't drink, for a variety of reasons, and when it's offered, they just say "Oh, thank you but I don't drink," and let it go. If someone presses you for a reason, they are being rude, but if you want to smooth things over, you can say something like "I've had to stop recently and it really blows" or "I'm under treatment for a medical condition that requires me to stop drinking," both of which are completely true. Someone who badgers you after THAT is an ass.

And lastly, I have an aunt with Hepatitis C. She's in her sixties, and she's had the disease for at least thirty years. She's had absolutely zero trouble finding people to date, partner with, and in one case marry, even after her diagnosis and with full disclosure. It's put some people off to be sure, but those are people who are clearly not the people for her.
posted by KathrynT at 12:37 PM on January 22, 2012 [1 favorite]

I don't mean to be overly harsh, but the general hit I get from what you have written is that HepC is the secondary problem right now. There is an overall tone of defeat and either/or thinking in your post that makes me wonder if your attitude is tripping you up more than the condition. I very much believe you when you say you struggle with depression and anxiety. Much of your writing points to you filtering your condition through those lenses. There seems to be a lot of Yeah But implicit in your post.

Support groups: Yeah but I'm private and can't go.
Dating: Yeah but I'll be rejected
Treatment: Yeah but other folks don't clear. Yeah but there are side effects
Socializing: Yeah but I can't drink and I don't like socialize without drinking.
Reaching out to others: Yeah but I don't want to disclose my HepC and feel dishonest if I don't disclose my HepC

Consider what you've laid out for us: You say you don't have the support you need to sustain you through treatment yet dismiss the most obvious paths towards getting that support. You've decided to forgo treatment based on anecdotal evidence from others and not on what you and your doctor have discussed. You seem to focus more on those who don't clear and less on the ones who do. You've pre-emptively decided that prospective lovers will reject you. They might, but with help and support you can learn how to weather rejection while keeping your self-esteem intact.

I work in substance abuse, so I'm likely overly sensitive to comments like I don’t enjoy socializing as much because I can no longer drink and I don’t want to say why and it is challenging to not drink. At the very least this hints at a somewhat skewed relationship with alcohol. To be clear, I am not saying you do or do not have a drinking problem, but I see no harm in you challenging your assertion that socializing and drinking are naturally connected. Again, this strikes me as overly black and white. It seems like the assumption that you have to explain why you're not drinking serves no purpose except to keep you socially isolated, especially in light of your reluctance to tell people about your condition.

If (and again, this is only an if) you do have a drinking problem there are support groups out there (both 12-step and not) that will put you in touch with other alcoholics and alcoholics with HepC. This covers a lot of bases - you'd be around folks who socialize without drinking and are more accepting of HepC. You'd develop a support system, you wouldn't have to hide and you might meet people who have learned to live well with HepC but without alcohol.

Lastly, I suspect that addressing your depression/anxiety aggressively will help you learn to live more peaceably with HepC. Think about it this way, since you already go through phases where you feel like your life is over, what do you have to loose?
posted by space_cookie at 12:45 PM on January 22, 2012 [4 favorites]

I'd agree with misha that, absent any sores in your mouth, you would probably not need to worry about transmitting anything through kissing. Sex is slightly riskier, but it is also the least likely of ways to transmit Hep C. It would probably be more dangerous to share a razor or toothbrush.

If you're really having a tough time with the drinking, you might consider going to an AA meeting in your area. Just sit in the back and listen. Take from it what you wish. Take a look around the room. Chances are pretty good that someone in there shares that diagnosis with you.

Others are right that no one will notice if you aren't drinking, and why you aren't need not be anybody's business but your own.

Finally, try to dig yourself out of this depression. Yes, you've got a diagnosis, but so long as you manage it, you're actually going to be fine.

on preview: what space_cookie says.
posted by Gilbert at 12:53 PM on January 22, 2012

I know that there is an extremely low probability of me passing the virus along to someone I am intimate with, but my negative inner voice wonders who would take the chance and who would want to become involved with someone with a chronic, potentially deadly disease.

Do you date men? At least among people I know, men seem to care about this sort of thing way, way less than women. As far as who would take the chance, my money is that a man who was very attracted to you, wanted sex and thought that the two of you were about to have sex, would more likely "take the chance" than not.
posted by cairdeas at 1:27 PM on January 22, 2012

The trouble with relying on the internet to get a sense of how often any given treatment works is that the people who have a compelling reason to complain or ask questions or look for support or start message board threads are the ones who didn't get good results. People are far far far less likely to start a thread to announce that something worked.
posted by Adventurer at 3:40 PM on January 22, 2012

Which brings me to this: you're depressed because of all this.

1) Find an MD who's SOLE focus is nephrology or Hepatitis. There is no way you will get up to date care from someone who isn't.

I have been SHOCKED at the bad information that docs, especially ER docs, are sure and certain is correct because they learned it back in the day at med school. The information is changing at an astounding rate. (Helped in part by all the money thrown at AIDS. Because of it, the knowledge about viruses in general is increasing exponentially.)

2) From what I understand, if your MD didn't prescribe anti-depressants as soon as your results came back, there's a chance they're doing things wrong. In addition to the depression that's natural from learning you have a chronic STD, a common symptom or side effects of Hep C is depression. (Something to do with serotonin or something. I don't actually know.)

3) Run all your prescriptions through your liver doctor. GPs and other MDs are woefully ignorant about what dosages are appropriate for someone with a compromised liver and also what meds will munch a compromised liver. EVERYTHING goes through your liver, so it's important.

4) The interferon cocktail treatment effing sucks (think chemo) but I know more people these days that have "cleared" the virus than haven't, though I know one person who can't seem to clear it no matter what. The end "cleared" result is more like remission of cancer. They don't declare it "cured" in my experience, but the end result is that there is no trace of it on tests.

5) The treatments these days are MILES ahead of where they were 5 or 10 years ago. The success rate for treating it is very good. Even 2 years ago they couldn't say that. If you're going to get Hep C, now was a good time :) And the treatments seem to be getting more effective every 6 months, no joke.

6) Really. It's worth the money to find a cutting edge liver MD. If you're in the San Francisco Bay Area, the East Bay Liver Clinic is where it's at. Check them out. I know two people who use them in conjunction with Kaiser, even though they aren't affiliated.
posted by small_ruminant at 4:48 PM on January 22, 2012 [1 favorite]

Misha, you'll have to speak for yourself. I for one would feel angry and betrayed if anybody knew she was HepC positive, knew there was a chance of oral transmission, and let me kiss her anyway. The OP is completely right: she should disclose her hepatitis.

All the other advice in this thread is sound, though, especially about getting the test confirmed and seeing a specialist. Just please don't take anyone else's health into your own hands.
posted by d. z. wang at 7:43 PM on January 22, 2012

I agree with small_ruminant (except you want a hepatologist, not a nephrologist.) Find a liver specialist and work with them on a treatment plan. In just the last year, treatments for hep C have vastly improved, and there are even better ones on the way. Treatments are getting shorter, easier, and more effective.

I was in a relationship with someone with hep C for several years. While it's worth disclosing, at the standard disclosure place in a relationship, it's far from a deal-breaker, except for a tiny minority of people who you likely wouldn't want to date anyway. It is not easily sexually transmitted, and is not going to be transmitted orally unless both people have gum disease or open sores.

Not drinking is a huge and difficult step to take care of yourself and your liver, and you should be really proud of having done that!

I will also echo the concerns about depression and treating that first, and any hepatologist will also want to manage that before starting treatment.
posted by gingerbeer at 1:36 PM on January 23, 2012

Misha, you'll have to speak for yourself. I for one would feel angry and betrayed if anybody knew she was HepC positive, knew there was a chance of oral transmission, and let me kiss her anyway.

Fair enough. There's actually never been even one confirmed case of Hep C being spread through kissing, but then again there's a small percentage of people who don't know how they were infected. Erring on the side of caution is a perfectly valid response.
posted by misha at 3:32 PM on January 23, 2012

Great Q&A with good info from maias.
posted by gingerbeer at 1:54 PM on February 28, 2012

The interferon cocktail treatment effing sucks

For some people.

I've just completed six months of Hep C. treatment -- the standard Interferon/Ribovirin combo -- though with quite high doses of Ribo (1400 mg a day).

Side effects: I was somewhat tired during the first month of treatment, and had a little nausea, although nothing unmanagable. By about three months into the treatment, I started to feel better than I'd ever felt in many, many years.

I also had anxieties about potential side effects. I decided if they were unmanageable, I'd just stop the treatment. Not only were they not unmanageable, they were barely noticable.

About half of the people I've talked to who have done the treatment didn't find the side effects to be a major problem at all.

While it's still early days, I appear to have shown a sustained virological response. Viral load was undetectable after a month of treatment, and has remained so throughout treatment.
posted by PeterMcDermott at 5:30 AM on December 25, 2012

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