November 3, 2010: On Twenty Years of Living with HIV

Living with HIV needs both medical and psychosocial support.

Living with HIV:

 

It was 20 years ago today, November 3rd, 1990, that  I was diagnosed with HIV.  Knowing this “anniversary” was coming up, I was thinking about how to write about it.  I had things in mind, like a bullet-pointed “highlights” of the challenges and even perhaps “rewarding” or at least “poignant” experiences since that time.  And then, I received an email late last night — and I knew that I had what I wanted to share, which is the email exchange, below, of that note to me, and below it, my response:

Hello Ken,

My partner and I need counseling and have a couple questions for you. Neither one of us are HIV-positive and have strong moral beliefs. How can you counsel us when your indiscretions and carelessness are not compatible with our HIV-negative lifestyle? Also, why is your website and Facebook picture over 20 years old? Are you using it as a dating site for yourself? Please let me know. Thank you.

Sincerely,

[Initials Redacted]

Dear [name redacted],

I read your note carefully, and while I could dismiss it handily, which would be understandable, given your hostile and insulting tone, and your insincere “request” for counseling, it is nevertheless my policy to help those in need, and I believe, from your note, that you are very much in need.

I’m curious about what the issues that you and your partner face.  Could it be that you are in conflict related to something about your apparent aggression and hostility?  Certainly you have demonstrated that to me, so it’s an easy hypothesis.  But in the theory behind anger, usually there is great pain — fear, sadness, loss, frustration, regret, etc. And while it is easy to get angry at those who act out their anger with us, such as your note to me, I believe it is also important to try to understand the pain that is behind the anger.  If I were to work with you and your partner, that is something I would want to explore, as well as how your anger affects your relationship.  My hunch is that it’s probably driving your partner away in some way.  To be on the receiving end of anger hurts us, but it also disgusts us and makes most of us want to pull away, unless you’re like me, as a therapist, when it makes me wonder why you are so angry, so that maybe we can address it, and reduce its harmful effects.
To answer your questions, as you may know from my website, I specialize, as I have for the past 19 years, in working with gay men — either individuals or couples — as well as those living with HIV.  I was the co-chair, for 9 years, of the Los Angeles County HIV Mental Health Task Force, helping other mental health professionals to effectively work with, empower, and advocate for their clients.  I helped co-write the Standards of Care document for LA County HIV mental health services for all non-profit agencies receiving funding under the Ryan White CARE Act, a federal funding program to help people with HIV/AIDS to get free case management, counseling, treatment education, peer support, and home health care, named for Ryan White, a young 8-year-old boy who died of AIDS in the late 80′s, after winning a well-publicized right to attend school, after ignorant classmates, parents, and school officials cruelly tried to force him out. His mother, Jeanne, still speaks at schools, churches, and conferences all over the world, about her experience losing her son to AIDS and trying to explain to him why people were so hostile to him.  I also co-chaired the annual “Coping with Hope” HIV Mental Health conference for 9 years, and spoke at many of them, on issues such as how to help people who are both living with HIV and coping with psychiatric disorders like Major Depression or Bipolar Disorder, or addictions.  These conferences were to help those who were ignorant about HIV issues to become educated, so that they could be sensitized and less judgmental.  I’ve also spoken several times at NSWAN, the National Social Work AIDS Network.  And for two years, I was a monthly mental health columnist for A&U, America’s AIDS Magazine.  You get the idea.
So, how can I counsel you and your partner when you are HIV-negative?  Because I understand and work with a wide variety of gay men, including those who have differences from me — whether it’s HIV status, ethnicity, age, country of origin, religion, relationship status (I am legally married to an HIV-negative guy, and we’ve been together for 8 years), socioeconomic status, zodiac sign, political affiliation, and so on.  The differences between client and therapist have been studied extensively, and the main conclusion of these studies has been that it is the relationship between client and therapist that has the most impact on positive therapeutic outcomes, regardless of differences, or even the theoretical orientation the therapist uses.
That’s great you have strong moral beliefs.  I do, too — so that wouldn’t be a difference for us, per se, but perhaps the actual content of our moral beliefs might differ.  I believe, generally, in approaching people with a spirit of generosity and goodwill.  From the tone of your note, we might differ on that.  People who are HIV-positive do not lack “moral beliefs”; that’s a cruel stereotype and accusation that has been used to discriminate against people with HIV/AIDS since the beginning of the epidemic.  That’s also something I have spent great effort – many hours, many days, many articles, many conversations — trying to fight.  People living with HIV have morals such as fortitude, courage, compassion, resilience, stamina, gratitude for life, the ability to overcome fears, and the determination to fight hard against the harmful effects of ignorance, intolerance, and stigma wherever they encounter it.
 How can I counsel you with “indiscretions” and “carelessness”?  I’m not perfect.  Therapists are not perfect, and it is folly for them to present themselves to be.  The difference, perhaps, is how we cope with our imperfections, with realism, bravery, humility, courage, creativity, and determination.  I am middle-aged, and so of course I have things in my past that I regret that have hurt others.  I don’t see the circumstances of my HIV transmission as being “careless”; I was very young, and I was perhaps ignorant at the time of how extensive the epidemic had become to us “young guys” at the time.  The reason I got tested was because a friend who was my age at the time (26) tested positive, who was my best friend growing up in Fairfax, Virginia, who was my first love in high school (though we never had sex).  And, I figured, that if someone as young as him could be infected, I could be, too, and not know it.  So, I tested, and indeed I was positive, but his “T-cell” count was much lower than mine, and eventually he passed away at age 34 in 1998.  I still miss him, even though he, like you, could be very hurtful when he got angry, and he got the most angry when his great love, Fernando, a beautiful Latin guy from Uruguay, died of AIDS at age 34 in 1996, after their many happy years together.
How can I counsel you, then?  Because a therapist must keep many “discretions” — all that we discuss in my office is confidential, as are the records I keep, according to strict guidelines.  On Wednesday, November 3rd, it will be exactly 20 years since I first tested positive.  I remember the day very well.  I was upset that day, of course, and I went to my friend’s place and we watched “Tales from the Crypt” on VHS video.  Most people with HIV remember well the day they were diagnosed.  It’s not something you forget easily.
I’m confused when you mention you and your partner’s “HIV-negative lifestyle”.  What is, exactly, an “HIV-negative lifestyle”?  Do you eat?  Pee?  Poop?  Work?  Do chores? Have sex?  Vote?  Watch TV?  Have dreams, goals, hopes, and dreams?  Fears, frustrations, annoyances, and worries?  How would any of these differ from whatever an “HIV-positive lifestyle” is?
You asked why my “website and Facebook picture are over 20 years old”.  How would you know?  Do you somehow see me often in person?  Your name isn’t familiar.  This doesn’t make sense; are you sure you’re not coping with a delusional psychosis as well as anger?  My website is changed almost daily, including today, as a dynamic and ever-changing professional website presence.  So, of course, it is not “20 years old”.  The same with my Facebook picture, which, if you’re referring to the one on my fan page on Facebook or on my website home page, was taken a little more than two years ago (that’s not 20; that’s off by ten-fold), and my current personal profile picture was taken at a gathering of friends just last Friday night.  You asked to let you know, so I have.
I’m not a young man anymore, and I don’t look like one.  I don’t look as attractive as perhaps I might have been 20 years ago.  Years of HIV-related lipoatrophy, expensive reconstructive treatments, physical hardships, and late nights working on articles and advocacy projects have made their presence known on my face.  My guess is that you are quite young, and while I could explain more, Time itself will have its own way of explaining it all to you in its own good, well, “time”, when you will understand exactly.  Trust me on that.
I do appreciate that your signed your letter “sincerely”.  I am responding sincerely.  I am sorry that whatever is bothering you, and perhaps you with your partner, has motivated you to write what you wrote, and indeed, how you wrote it.  I’m not sure if you intended it to be insulting and hostile; my guess is that you did, and it somehow makes you “feel” more empowered, and a little less scared, to take that approach.  So I respond with perhaps a bit of the same, frustrated as I am with over 20 years of witnessing ignorance, hate, intolerance, and fear from others, with their stigmatic fear of HIV.  It’s all been cruel.  It’s been deadly.  And it’s all been infuriatingly unnecessary.  But I’ve also seen in these decades of HIV/AIDS epidemic grace, sacrifice, tireless work, commitment, patience, and profound – even divine – love — as evidenced by things like the 30,000 walkers in this year’s AIDS Walk LA, raising over three million dollars, benefiting AIDS Project Los Angeles, where I was a “phone buddy” volunteer in 1990 when I decided to go to graduate school and become a therapist, and help those in need.  I didn’t have a choice; I felt I was compelled to help my brothers in their hour of need.
That’s why, at 12:59 a.m., when I am tired from a long day of seeing clients, and worrying over election results about people who might bring hate, fear, and hostility in abundance to our national and local governments – that I write this to you, and to answer your questions.  Because as tired as I am (fatigue is my most common HIV-related symptom) I believe you are in need, and you are in as much fear now as the men I counseled on the phone as a volunteer for AIDS Project Los Angeles in 1990.  They needed my compassion, and my help, as best as I could give.  That’s what I do.
In answer to your questions, that’s how I help couples like you and your partner, even as a “careless” HIV-positive person.
Good luck.
(For a free, 15-minute consultation, to book an appointment for therapy or coaching, to inquire about speaking/workshops, or for more information, call/text 310-339-5778, or email Ken@GayTherapyLA.com.) 

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