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A Year (Almost) In Review

| 18 Comments
It has now been almost a full year since I've last blogged. I want to begin by apologizing for taking such a long break from blogging and by thanking everyone who commented on my previous blog post.  Although I haven't been back to blog since September, I frequently think about the POZ community and at various times throughout this past year, I have come online to review the messages of solidarity, hope, and strength which were left for me (and for others in similar situations). Some messages even brought me to tears.

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 and all--and allow myself to live and speak openly, the way I do for just about 1 hour each week in group...

18 Comments

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Comments on Anonymous's blog entry "A Year (Almost) In Review"

I'm reasonably comfortable and out about my status though I do not wear it like a banner after 23 years - discretion still remains mine. But I never date negs, there are just too many barriers and it seldom works.

I do not think you should accept the idea, that you will be you will " continue to live indefinitely with HIV" even though the idea of a cure should not beyond source of happiness. The reality of the cure is closer than ever.
One day you might not need to take drugs and that day will happen.

Also for anyone positive saying that they will NEVER date a negative person, is as wrong as a negative person saying: the will never date a positive person.
Close minds can destroy the principle of reality
We too can discriminate towards others.

If you are rejected by brings positive... Think :

why weren't you in a happy relationship when you were negative ?

Is because you were either, too fat, too thin, too old , too insecure , too emotionally unavailable , not as successfull as he/she wanted, and the list goes on..

My point is that in the dating world there's endless reasons why someone will reject you.
Being positive is one of them.

Believe , do not lose the believe.

I agree...but a few months ago I thought I meet the perfect neg. he was and did take Prep for a month, but after 3 shorts months of being with him...he said he couldn't take it. The medication made him feel sick and he wasnt the type to wear condoms for the rest of his life...go figure!! He broke my heart.

Your blog post provided a grim and realistic reminder about how stigmatizing HIV is. A positive serostatus is often the silver bullet for many blossoming relationships. It really takes a remarkable human being to see past a medical condition and love freely and completely. May you find what it is you deserve when you are ready. Eyes wide open. Blessings.

I have been now two years being HIV positive. In fact I am lucky to be alive right now from a brain infection from the HIV..
Support of my family has been just that of excepting it and that is all. The best support i have found is in others that are on the same river. I find making friends is good medicine for the soul.. And that is hard to do as well. I have found that women that are HIV positive to be somewhat withdrawn.. My heart goes out to them.
so for now the best I can do is trying bringing positive friends together.. I even started a friendship group. I also added some to my facebook just so they can see I am a real person with a history. My name is Bruce Ellsworth
I will seek friendships until the day I die.
And I am part of your world too Anonymous. We are both a very big part of the real world.
Bruce

I'm astounded that this blogger makes her ex-boyfriend sound like an intolerant wimp who couldn't "handle" the fact that he was scared, hesitant, confused about having sex with someone with a deadly, infectious, debilitating disease.

Stigma?

That's what you accuse him of because he's obviously scared out of his wits and just not able to deal?

When you accuse someone of stigma because they have false information, that's one thing. When they're just scared out of their minds and unprepared, I'm calling you on it.

Anonymous, we are here to support you because you are clearly in the "first ten years" phase of just accepting the situation. No doubt you hope for a cure soon so you may just put this part of your life away as some awful memory, but you ARE infectious and people WILL be scared. I sure as hell would be scared out of my mind to date a serial killer even if he showed me a bunch of graphs and academic papers saying he's okay. Because for a person who hasn't personally dealt with HIV, that's the equivalent situation.

Instead, go deep and count your blessings. And they're real. You would be dead if this happened 20 years ago. Thin as f*ck and looking 60 years at your age. Instead, you're more likely to die in a car accident or cancer than AIDS within the next 10 years. After 10 years, you're MUCH more likely to die of a car accident or cancer than AIDS. Medical science, every American who pays taxes, research, has supported you and will support you until there's a cure.

But YOU gotta be braver. Don't just crumple up because a nice boy ran away from you. This isn't the 1950s. There are other boys who are a little tougher, maybe tough enough to take the risks with you. and if you don't find one, then you gotta build a relationship with yourself that's a little more healthy and accepting that life is just not fair.

Hey this is nyc_agent from poz personals. I wanted to say thanks for coming back and blogging! diagnosed in 2010 and going on two years, I feel the same way as you in that it's still a shock and disbelief. Like you I am not yet ready to be fully out there as well, but your comments made me think: if I do come out am I forced to be a full time advocate? Will people look at my actions and lifestyle and say" he shouldn't be doing this and that" or "he should be acting this way because he has hiv"? In this day an age it seems so, but I still think my fate is defined by this virus. It's what we do after the fact that defines us.

The dating is hard, and you might run across men who although sympathetic to your status, might not be the guy you would deal with had you been negative..but don't give up! In the end you'll find people and guys who will treat you right.

glad to hear from you and hope you keep writing , because there are people out there like myself who are in the "first ten years" that are taking it day by day too.

Actually, as a female under treatment, she's probably NOT infectious. When people start telling her to "grow up and accept that she's a monster", or however we're supposed to accept it, it doesn't come off as tough love, it comes off as bigotry and self-imposed limits. We don't need to hear how awful stuff was 20 years ago, it's still awful now, and we shouldn't shut up and accept it because it's better than death. Thanks for playing though. Please, those of us in "the first ten years" don't want, and are better off without, this kind of "sage advice".

Funny Andy, because this young woman is an educated white woman. Her chances of getting HIV was actually not anything near "probably." Statistically, what happened to her doesn't happen enough that the public (with all our sage advice) thinks it's worth it to spend money for AIDS awareness campaigns targeting her (and it won't be ever)

You don't know shit about how infectious women are. If she has an additional STD, especially the kind that produces genital sores, she's actually much more infectious than a male under treatment with the same STDs. FYI! So I wouldn't go around spreading false information because you read a few Newsweek articles.

You know what pisses me off? It is much better than 20 years ago, FYI. It's something to praise God about. I hope this young woman can one day be healthy enough to see a cure, so she can just say, oh AIDS? it wasn't so bad. But she SHOULD be grateful because she's not wasted and dead.


G, your words are an awful santorum of hatred and nostalgia. The fact that the OP was infected has NOTHING to do with the the possibility of her infecting anyone else. Just because someone disagrees with you doesn't mean they "got their information from newsweek", as if that's even a problem.

You know what pisses me off? This virus has been "treatable" to some extent or other for more than half it's known existence, but we're still living in 1987 and telling ourselves to shut up and disregard the very real issues we face because it could be worse. We don't need to be grateful for ARVs any more than antibiotics, and that should have nothing to do with anyone's rightious indignation at being pushed to the margins of society. Stop telling people to shut up and get over it. Stop cussing at me because you disagree, and start having some compassion.

The truth is fear is what drives most people they are afraid of what they do not understand, I was married for 8 years, (it was a good marriage for the most part beyond the normal things married people live with) but I had a out patient surgery for kidney stones, part of the process was a blood test that indicated something was off about my blood later I found out I was positive, as a legal matter you have to disclose immediately to any partners you have, (my case was hard and easy, as my wife was my only partner) her first reaction was disbelief then a freezing cold reality began, which resulted in first legal separation then a divorce. It was painful because when she lost her father she cried for months and I was there for her every step of the way, but when I needed her it was not to be, I felt betrayed and I felt like I would never find love again, I still feel that way but I keep hoping to find someone that can understand and perhaps even find the idea of falling in love something that might one day happen again, I cant give up but sometimes it feel very lonely...

I can relate to your story however, that even happen with other positive individuals, ive experienced so many guys that cannot express feelings and when you attempt to show them, they run away or get scared. I think dating in general can be tough poz to poz or poz to neg. It a tough world unfortunately, especially in more conservative states like ohio.

If I were you, I would never go public. HIV is a problem nobody can solve for you except God. Why telling people of problems that they cannot solve for you but instead mock you for having them in order to feel good about themselves. I mean think twice. Looks like you are not yet grounded enough to be yourself in this world. You are not in competition whatsoever with anybody on how to live life nor in need to seek for approval and validation from anybody in order to feel good about yourself. You are having this need to go public because you have not yet killed the need in you for a perfect world where people accept you inspite of your hiv that does not exist so you need some pity instead. Girl, think twice. We come into this world and we have different stories to tell about it. Yours maybe HIV and other things but thats it. Others also got more than that to tell. I wish I could give you the strenght I got to live this crazy life. I don't have hiv and I do not wish to have it but if it ever happens so be it. Life goes on because i do not have a need for a perfect world. This need has been killed in me for years now and it helps me to enjoy whatever good the life throws at me without reservations. I do not know how to explain how lucky I'm to have this strength but when you reach there you will know yourself. Keep evolving through self development. I do not share problems that someone cannot help me on.

I read your story on Poz, I haven't forgotten about your story. just hope you are doing well. hope you blog soon!

thank you for sharing. my son was diagnosed as HIV positive about 3 years ago. he struggles so deeply with depression at times especially around the area of dating, then he calls and I just don't know what to do to help him except tell him that I love him.I am willing to slowly educate others that don't have HIV about how to treat others who do have HIV. What do you think I should tell them?

I feel the same way I'm anonymous too I have been positive 10 years or more One day I can come out the closet to feel more openly about my status but the stigma is something else I want to become an activist to one day.

I'm proud of you my sister, my name in Sharon and I live in Maryland, I've been positive living w/this virus for 15 years now. It does get easier. I'm very vocal, if someone wants to talk about it. I'm still not to the point were my employer will ever know my status because people are still ignorant, discriminating and afraid of this word "HIV." It's no longer a death sentence as so many people have stated. It doesn't define me as a black women though. Life is good for me right now, I really don't put much thought in it. For me my main concern is my Diabetes and keeping my BP good. At one point I was on line w/POZ dating site, searching for a mate, but it's a lot of work, and before any sex occurs you should allow or disclose to the other person your status. As I was not given this opportunity. When I found out it was too late. But sister stay on the road your on, stay prayed up and positive, an deffinately stay in your Support Groups. They've help me so much. Your sister Sharon Ash, 8/31/2013.

omg. you took me back to the time i was newly infected with HIV (33 years ago) and was in the dating scene. as if the fear of AIDS (that's what it was solely known as after i was told i had "GRID") wasn't enough, i was young, attractive and so very burdened with every aspect of, now, the HIV virus. remember, i was diagnosed when it was the complete unknown and "scurge of the earth", and i am not minimizing your feelings and "fears", solely relating.
i always chose to be honest about my hiv status. before any intimacy or real attachments, i had to "un-load it". i was so very turmoiled how to deal with it all being i wanted to be loved and experience all that goes with that, but at "the end of the day" could not with-hold my illness. i had numerous men literally walk out, and away from me. back then one could clear a room by saying they had "AIDS" (remember, that was what it was solely known as in the 1980's).
and THEN!!!!!!!!!!! i met a man...my husband of 20 years now, who DID NOT RUN.
i took me FOREVER to separate me from my illness. you are not your diagnosis.....you are you.
again, not to minimize, but i wish i were not one of the "ground floor AIDS " people, as it's a whole nother baby than today. and look...i am married to an HIV negative man for 20 years, and the REAL ass-kicker..alive and well after 33 years of HIV, along with HEP B&C!!!!!!!!!!!!
my advice...GO GIRL....and be honest

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This page contains a single entry by Anonymous published on August 15, 2012 9:47 AM.

My Reality Check: Dating with HIV was the previous entry in this blog.

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