Since receiving the news about my zero, I’ve spent a lot of time telling people the good news.
And that it’s not quite cured, but a damn good sign of it.
Celebrations, Comic-Con, and lots of Family events have been the major focus these past few weeks.
My blog has felt a little lacking lately. But in spite of having lots to do, I’ve had time to write.
So why didn’t I? It wasn’t a lack of feeling connected with the community, or sadness, the rigors of degrading health or even trying to really grasp what a zero viral load means.
It was that for the moment, I was tired of the topic. I spend much of my time explaining to people what’s going on with treatment, and I appreciate them asking. But when you get the question 10-20 times a day for months...it’s tiring. While the success is something I love and am incredibly excited for, explaining HCV is never pleasant. Most people close to me, know what’s going on and don’t ask so frequently, which I appreciate. But when I see people who know me as an acquaintance, it’s usually the first question. Whether they verbalize the question or not, is a whole ’nother awkward dance. I don’t mind answering, but it’s like when you find out someone speaks another language. Don’t say “hey speak some of that cool language.” try “Can you tell me a story, about...” and give a small story prompt. It’s more genuine when you’re interested in the topic to have invested more than a flash of a thought. So instead of asking “how are you?” or “how is treatment going?” ask about a symptom, a side effect, something they’re concerned about or ask about how they’re following through on the next stages.
Now I’d like to talk about something most people generally aren’t comfortable talking about, let alone how HCV impacts or relates to it.
My knowledge of HCV has expanded has I’ve grown older, but I’ve always been careful as far as my partners are concerned. It’s a very sensitive subject, because not only is it an intimate expression, it’s also risky. In every relationship I’ve had I’ve explained the risks to them, some have felt it was too great a risk to even association with me and left. A few very hardy women have stayed the course and taken the risk. While not an STD, it is possible to spread HCV during intercourse. The bigger risks were the unseen ones. If I shave, it cuts the skin, and raises the risk of transfer. Sharing a deodorant stick, or any personal item is completely out of the question. The trouble comes with small cuts, or bruises often ignored in the heat of the moment. They can’t be with HCV, it’s an odd vigilance, but it’s necessary. But one of the first things I hear when I mention HCV to a new person is how it relates to sex. Essentially, if you think Fifty Shades of Grey was barely even touching on the reality of rough sex, you should be cautious. Rough sex is a large risk, some of you are probably thinking to yourself... “duh.” But rough sex isn’t always bridging into whips and chains, sometimes it’s just intense and passionate. It’s always my biggest fear, transferring this virus to anyone. And if it were to someone I love, it would be devastating. With each of my relationships I disclosed as much as I knew, which in my younger days was not much in comparison. But recalling what I disclosed and to whom brings me to realize that there were pertinent facts I left out, not realizing the risk. What I realized was that while I may have explained the situation, seldom did my partner look much into it. A frightening reality I now realize. It’s actually amazing what some people seem to not care about in the heat of the moment. If your partner has it, and you’re reading this... chances are you’re doing some research, but do more. Some people who have HCV know little or nothing about it. Knowledge is power. If you’re involved with someone there is a 1/100 chance they have it. Before you get down, get tested for both STDs and HCV.
And now for the other side of sex.
What? What other side? The path up to sex. There are a lot of preconceived notions people have regarding HCV. A long time ago, while out downtown with my girlfriend and friends, we were separated and became two smaller groups. A new friend, my girlfriend and I were in one group and everyone else in the other. In talking with my new friend he inquired as to why I wasn’t drinking (Never ask this question, it’s rude). I responded “I can’t drink. I’m the DD.”
There’s a pause there, it’s not I can’t drink because I’m the DD, it’s I can’t drink. I’m the DD. implying that there is another reason I can’t drink. New friend may be a little tipsy but he figured it out, he’s pretty inquisitive “why can’t you drink?” he asks.
Rather than play out the “well I have liver cirrhosis, shit kinda sucks a bunch.” I just explain to him I have HCV. and then explain the symptoms, the outlook and the transmission methods in brief. (I could give you a one minute breakdown of HCV I have said it so many times, do you see why I’m tired of talking about it sometimes? anyway...) He then, concerned, turns to me to remind me the transmission methods, but confuses them with Hep B. and then confuses it for an STD... I correct him, several times. After about seven times of this, I walk away from him and I navigate social situations to avoid conversation with him. In the end he realized what had happened, apologized and is still ashamed of it. Why I talk about it here has nothing to do with him, but rather the fact that anyone could be so confident and so wrong... only helps perpetuate the two major themes of this blog entry. Sex and the exhaustive nature of explaining HCV.
OH yea! I almost forgot about me for a minute there.
Since finding out about my zero, my symptoms have been decreasing overall. Joint stiffness and pain have become the predominant themes in the final weeks. I am very excited about the prospect of ending treatment soon. The blood draw I took today will hopefully repeat the zero I had previously.
For now I wait. Bound.