I'm not sure where to begin...this year has been full of ups and downs. While my health continues to improve, my circle of supportive friends continues to grow, and my connection to the HIV community is strengthened, I have also faced some intensely hurtful words and heartache.
I'll start by writing about the area of living with HIV where I've had the most difficultly--and where I think most of us have the most difficulty--dating. A month or two after my last blog entry, an acquaintance who I had always been attracted to began to show interest in me. Everything seemed to be going perfectly...he made me laugh, we talked on the phone as if we had been close friends for years, and when we spent time together he showered me with affection.
Although in hindsight, I feel as if I disclosed too quickly, before we had a chance to know each other on a deeper level, the actual disclosure went as smoothly as I could've hoped. After I broke the news to him, he held me, shared some secrets of his own, and expressed kindness and empathy with both his words and his touch. He told me he wasn't sure if he was prepared for all that came with my status, but said he wanted to be there for me, and hinted that he may just need some time to get used to the idea. We talked about what our future would look like together, and he shared his concerns.
To my surprise he didn't immediately disappear. However, he did
slowly distance himself from me, revealed his conflicted emotions, and it became increasingly
evident that he was not able to think of me in the same way he used to, now that I had disclosed my status. To no avail, I showed him all of the science about how
we could safely be together without risking transmission.
While he seemed to understand the various articles, graphs, and studies I sent his way, I slowly learned that he wasn't willing to build a relationship with me once he knew I was positive. He began to treat me with less and less respect and became increasingly unreliable. He said some very hurtful things that left me in tears. Although I believe he did not mean to hurt me, his words were gut-wrenching realizations of how my status had totally (and unfairly) changed his view of me.
Despite the pain, I still pushed and tried to make it work (a decision I've scrutinized with my individual therapist...why would I even want to be with someone who could disrespect me and bring me to tears, without so much as a genuine apology?). Eventually, after a few failed attempts at sex, which again left me feeling heartbroken and rejected, I finally had enough and told him I couldn't keep trying to make whatever-it-was-between-us (certainly not a relationship) work.
Throughout all of this, I was lucky to have the incredible support of a few trusted friends and a new peer support group, which I started attending earlier this year. I can't say enough how crucial finding a support group has been. Connecting face to face with peers who are dealing with similar issues, and who could truly empathize with my struggles and fears, helps to lift some of the heavy weight off of my shoulders (and heart) that this disease often brings.
Another wonderful thing about the peer group is how safe I feel there. At group I find myself feeling uniquely free to be completely open and just be me. It's been incredibly liberating to speak about my feelings around my diagnosis and status openly in a group setting. Each week I look forward to my group sessions, and have begun to develop supportive relationships with people whom I hope to one day call my lifelong friends.
It's hard to believe that just over two years ago I was diagnosed
with HIV. Even as I wrote that sentence, it still shocked me, as if somehow, on
some level, it's still news to me. Somehow after all the therapy, the journal
entries, the blog posts, the failed disclosures, and the daily reminder delivered
by my morning medication, I still have some small, inexplicable level of disbelief that HIV is
really something I'm living with and will continue to live with indefinitely. Unfortunately,
I think this is one of the many manifestations of stigma that I have internalized.
While I still wish to remain anonymous (for now) I continuously fantasize about the day when I will be brave enough to be "out" with my status. At the same time, however, I fear that I will be defined by my status. Rather than see me for me, will people see only my disease? And aren't I entitled to the privacy around my sexual history that people without this disease are entitled? Will people question why I've pursued the career path I'm pursuing, or assume that I should be a full time advocate? (While I do sincerely hope to be an advocate for the HIV community in some way or another, I also have other career goals that I am pursuing passionately now, and don't want to allow my diagnosis to divert me from the goals I had pre-diagnosis.). If I am "out," will I incessantly hear whispers and have to face more words that bring me to tears? Or will I no longer let others' ignorance and fear effect me?
Immediately after my diagnosis, I read Regan Hofmann's book "I
Have Something to Tell You." In her book, Regan speaks bravely of her journey
and her ultimate decision to "come out" and become a full time advocate. Two years
ago the thought of being open about my status seemed like a totally foreign idea and an unreachable goal. Now, two years later, when I find myself reaching for the book again, I feel as if I'm
getting closer to a place where I can understand both the personal and
societal importance of being more open with others about my status. I'm getting closer to a place where all of the questions and fears discussed above will not outweigh the desire to just freely be me--HIV
allow myself to live and speak openly, the way I do for just about 1 hour each week in