Ok I’ve got my blogging hat on again. Promised I would write about how I told my family, so here I go.

As I mentioned previously, I decided to keep my diagnosis to myself until I had more information. I did this for a couple of reasons. I needed to get myself together, and I knew my family would have a lot of questions. I wanted to have the answers for them. So, I researched. A LOT. I read about all the tests I would need, and how to interpret the results. I read about the treatment–what the drugs were, side effects, success rates, cost. I considered the possibility of NOT treating, if my liver were in good enough shape. I am a pretty open person so it was hard to keep this to myself for a couple of months. I usually tell my family everything. Plus, I was really worried that I had put them at risk and wanted to rush home and tell them all to get tested, STAT!.

I wound up telling them about a week before my hepatologist appointment. I wanted to wait until after the appointment, but I realized my younger brother would be going back to college and I wanted to tell everyone at once. I figured that way I they could all ask questions and build off of each other’s questions and my answers. I asked everyone to gather in my parents’ living room. This was awkward. I kept waiting for them all to just wind up in the same room but it never happened, so then I had to make a production out of it. Damn.  Then they all knew something was up. I said, “Do you want the good news or the bad news first?” No one would pick, so I blurted, “The good news is, I’m not a hypochondriac, and I”m not just lazy! The bad news is, I have hepatitis C.”

First words out of my mother’s mouth: “REALLY?!?!!? (pause). I always knew something was wrong with you!”

Dad: “I thought you were going to tell us you were pregnant and getting married.”

Thanks for that guys.

Then they all just looked at me for a little bit, so I asked if they knew much about Hep C. Everyone shook their heads. So, I explained that it is a virus that attacks your liver, but that it is very slow moving and that most people do not die from this. I told them that lots of people never even know they have it, and that it can only be transmitted through blood to blood contact, not any other way. I pointed out that since it can be spread through things like nail clippers and tooth brushes, they should all probably be tested just as a precaution. I asked them if any of them had given blood recently, and it turned out that they all had…so we knew that no one else had contracted the virus, since they would have been notified.

I make this sound like I was oh so calm and cool about the situation, but in fact I shook the entire time I was talking to them. I didn’t want this to change the way anyone thought about me. By this I mean I didn’t want my parents to worry themselves to death. I knew they wouldn’t reject me or anything like that (I know I’m lucky). I did worry a little bit that they would wonder if I’d gotten this some other way than the blood transfusions, but it turned out that Mom and Dad had always worried about the blood transfusions I’d had as an infant. Thing is, that was back in 1985 when HIV was just being discovered, and people were VERY unaccepting of HIV/AIDS patients. A man who worked for the same company as my father was fired when management found out his young son had HIV. My parents were so frightened that I might wind up HIV positive, they never wondered about any other blood borne diseases. They didn’t have me tested for HIV, because at that time there was no effective treatment, and a positive diagnosis would have been of no practical use, and in fact would have been harmful. I can’t imagine what that must have been like for them, watching for signs of illness in their child and being afraid to have the test done that could have allayed their fears. Now I think they have been beating themselves up for not getting me tested for other pathogens as a child.

I told my(ex)  boyfriend over skype. I know, I know, it sounds like a copout, but let me explain. He was working at a summer job in New York, and had scheduled a doctor’s appointment for a concussion (long story). Now this guy NEVER goes to the doctor, and I knew he wouldn’t want to make an appointment specifically to get tested. So, I told him the night before his doctor’s appointment, hoping that he would decide to have the test done while he was there. He took it really well. He wasn’t repulsed, as I had feared, and he wasn’t afraid for himself (at least not that I could see). He was very concerned about me, and angry that I hadn’t told him when I first found out (I waited to tell him originially thinking I would do it in person, when he returned form NY). We didn’t talk for very long–I gave him the facts and told him I would email him some information that he could look at on his own.  He did read the info but wound up not getting tested because he had to cancel the appointment for insurance reasons. This still worries me, but it is his choice and I try not to pressure him.

So now my immediate family and a few close friends know. I haven’t told my grandparents because I feel it would only burden them, even though I know they will be angry if they ever find out from someone else (this isn’t likely). I know I am lucky to have people in my life who are so accepting. Unfortunately not everyone will handle this news as well as they did.  This information is yours and yours alone to share or withhold as you choose. This isn’t something you should have to deal with alone, so I hope if you are reading this that there is someone you can tell. I hope someday that I can be more open about this disease, but until I am more established in my career, I will have to keep silent. That’s why this blog is anonymous (for now).

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