Telling Your Family You Have Hepatitis C

How do you tell your family you have Hep C? How do you tell your wife, husband, partner, children, parents that you have a disease that, in many people’s minds, is exclusively contracted by drug addicts and sexual deviants? How do you handle the possibility that others in your family are infected? How do you talk about the question of who infected whom? How do you handle the behavioral changes this forces on members of your family? How do you discuss the effect this will have on the future of your relationship and indeed on the nature of the future life that the infected party will live?

All of these are difficult, complicated and frightening questions to consider. Hep C changes everything about how you think about your life and about how others think about you and your life. Some of those changes are not going to be pleasant or comforting or supportive and you have to be prepared to deal with those consequences.

What was foremost in my mind was that I had to tell my wife and that she had to get tested to see whether or not she had the disease. I had to know whether or not I had infected her. I desperately hoped that I had not. It actually never occurred to me until several days later, that she might have infected me. For whatever reason, be it ego-centricity, my Catholic upbringing which always reinforced the fact that you were a sinner and were eternally guilty besides, or just the innocent (and rather condescending) thought that certainly my wife could never have engaged in any behaviors that put her at risk for contracting Hep C. Certainly she could never have had any medical exposure to contaminated blood products; why she never did anything risky or dangerous or something that might have a high risk of physical trauma and bleeding – Hah!

I have no doubt that there are another set of people who, upon learning that they were infected, would immediately think that their partner had infected them. Their initial reaction might not be the guilt and worry I felt, but rather anger and aggression. This is not me, but I can certainly think of the people I know who would feel this way. They would have a separate but equally challenging set of discussions and emotions to work through with their families.

I also had to plan the act of telling my wife. I am not the sort of person who blurts out facts like that immediately upon learning them. I need to think about what the news means, learn the facts of what it represents and then think about how I believe it will affect me and mine, before I enter the discussion. Then having laid out the situation, I start to deal with the emotional content. My wife is quite the opposite. Emotional stuff happens and she gets it out immediately. She learns bad news and shortly after, I learn the bad news. She talks (and sometimes rants) about for an hour or so and then it’s over. The storm has passed, she has dealt with the emotions and can move on to the consequences and the planning and the long-term. Knowing this (let’s face it, you learn the occasional bits of wisdom after living with someone for north of 20 years) it was important for me to have my ducks in a row and my time and place laid out to break the news. No doubt you have your own set of emotional and power dynamics in your relationship, think about them and consider how they affect the best way to start talking about your new situation.

There is also the question of how to bring up the behavioral changes. First of all, the immediate rush to help when you have a physical injury has to stop. Your partner, your children all have to be told that your blood is now dangerous. It can infect them and they have to be very careful how they deal with you when you are bleeding and with any blood that you drip from a wound or leave on a cloth or bandage. These are hard things for folks to deal with and hard things to tell them. There are also the potential changes in sexual activity. If you are monogamous, you can usually continue as before, though you may want the man to use a condom. If you are intimate with more than one person, you have to be careful and use condoms and you have to be ready for serious changes in the reactions of your partners and the status of your relationships. A lot of people cannot handle the idea of a diseased partner and this applies to both long-term and short-term relationships. This is all potent stuff and setting up a discussion about it can be difficult and harrowing. But it is a discussion you must have. Not telling a sex partner you are infected is irresponsible and morally bankrupt.

Definitely do all this sober. The last thing you need is the fuzzy thinking and emotional volatility of being high while trying to have this discussion. You may damn well feel that you need a drink to talk about this, but I would suggest trying your hardest to deal with it straight.

Times like these definitely teach you a lot about yourself and your loved ones. The best advice I heard was a continuation of the advice on how to treat yourself. Be patient with yourself as you deal with this disease and above all be patient with your loved ones. It can be far harder on them than you. You are directly dealing with the disease and have a chance to feel some tiny level of control - they have none. Getting used to having a family member (be it wife, husband, father, mother, child, lover) with a serious long-term illness that you cannot have any direct effect on is extremely stressful. Give them time to come to terms. They may never be able to handle it, but try as hard as you can to be patient with them while they make the attempt.

I must disclose that I told only one person in my immediate family about my disease. It was my kid sister. We have been close for several years and she has had her own bouts of serious illness. I knew that she would take the news in stride and be able to handle it emotionally. I did not tell my mother who is 83 years old and in frail health. I do not feel I need to add the stress of worrying about one of her children being seriously ill to her often scattered state of mind. I also did not tell my older brother. He went through a serious brain bleed due to an aneurysm about 15 years ago. It involved serious brain surgery, having to relearn the English language, and a permanent personality change. He is much more emotional that he was before and prone to worry obsessively over bad news. Again, I did not feel that burdening him with the constant worry he would certainly apply to the situation was fair. He has enough problems without that.

Again, these are all the sorts of considerations that come into play when you think about telling people about your illness.

Next up I’ll tell about how it went when I told my wife.