Tuesday, January 15, 2008

The Telling Now

[Update update: ...in the morning - way too tired right now. -  

Update: New questions added at bottom of post. Couldn't find exact statistics I said I'd find. Both stories introduced here will be posted together tonight.]

OK. I'm going to try to write about my own life again. Because I believe it matters, too. And that writing about it matters. I don't know how, but it does. This post is an explanatory introduction to two "pieces," to follow.

Background for presenting these two peices: Anyone who's been following this blog the last month knows about a recent personal crisis I'm recovering from that had to do, in part, with my fears in trying to deal with a long-term "friend"'s lack of urgency to get tested for HIV after having had unprotected with me. I will have had HIV 22 years as of next month to the best of my knowledge (based on symptoms, although I wasn't tested until October of 1991, when my immune system was already significantly impaired and an ex-boyfriend died). I am well-educated (and educating) about HIV transmission risks, as is my "friend". We took a conscious adult risk to be with each other unprotected, knowing that risk of vaginal transmission is very low (not zero), and even lower when viral-load (free-floating, non-dormant viral particles in blood or fluids) is low or undetectable. My medicines the last few years, regarding that, have been effective. My viral-load, with one small blip, has been undetectable for the last three years. [I will find most updated female to male transmission stats here tomorrow.] I was scared and upset that my "friend" waited what felt like an unnecessarily-interminable amount of time to be tested. My "friend" was just being practical, believing rationally that whatever happened had already happened or not, and that there was no reason to not wait for a doctor's appointment already soon scheduled, required by his work, which included an HIV-test requirement. And I didn't understand and was upset that even then, at the appointment, there was no reason to my "friend" to ask for rapid testing (HIV results within one hour), but to him, it was fine to wait the ten days it would take to get the results of the full panel of all results. We knew the result would come back on a Friday, January 4 or the next Monday, so I assumed when I didn't hear from him on Friday, that the result hadn't come in yet - rather than that he hadn't seen reason to call me about it till another day had passed. I had suggested knowing sooner, but I hadn't pushed him. I felt it was his body and his decision. There was nothing unusual maybe with his reaction to HIV-testing present-tense.

Relevance for my including these two pieces now: It's just that my reaction to the process of testing, and getting results, and disclosing those results to other people affected is not present-tense. My reactions are in 1991 and 1992. There was no "rapid testing" and a positive result did not mean what it means means now. And I haven't been through this since then to get over it. And as many years as my "friend" has known me, he has no reason to understand all that goes with that.

Writing Disclaimer: My natural way of writing is not to explain (or justify) like I have thus far in this introduction. My natural way of writing is quilt-like. Small pieces of very direct experience. Vignettes, swatches of straight-forward dialogue, email exchanges as they are, to be interpreted as they will. To speak for themselves in the context of each other. It feels like its harder to lose the truth that way, although most people like to be told something that they can then either agree or disagree on to find truth, instead of seeing what happens, when you let yourself be surrounded by all the little articles. (But maybe that 's why I'm on antipsychotics.) I've had English teachers say, "Some of your writing is really unusually good, but I can't do anything with this paper because there is no thesis at all that I could find (although you have a good one articulated in the right place that you didn't use, although you refer to it periodically), and I really tried to naturally come up through it all some way to bind it into one because you have some interesting and worthy ideas, but I just can't get it to go together." That happens in my writing most when things matter to me beyond what I can find language for. Like my posting my "friend"'s email of his good negative result, to great criticism and later support. And like my lack of ability to speak all I had to say behind what I did say (and also post) to my "friend"'s good news, too.

So now for these two torn shapes of fabric I'm introducing here, "Telling 1991," and, "Telling 1992," - they are not about behavior, or risk, or symptoms, or testing in itself, or results, or illness and death in themselves. They don't have a point. They are just about the telling - in 1991, and in 1992.

Permissions: And, KNOW NOW that the people in the stories who I have any way of reaching have been told what I am telling on my blog here now about it, and they support my telling whole-heartedly, as did my "friend" for me for this one waning month.


"Telling 1991" and "Telling 1992" to be told without delay...

Questions that would help me if you answered any of (I'm not asking for a report - just answering one would help. And it's fine with me if answers are anonymous - if they're real answers and if they are answers to the questions I am asking):

If you thought you had been exposed to HIV, but knew you were at low risk statistically (and you wouldn't be at risk of exposing someone else at all for at least a couple months), would rapid testing (results in one hour) be something you would want? Would it be important to you?

What would play into your answer, (like would you prefer some time to get used to the idea first? Would you be scared? Would you be able to just not worry knowing the risk was low, and get tested at your next scheduled doctor's appointment instead? What would play into your decision-making?)

Have you ever been HIV tested just to be sure, or as a job requirement? Was the process daunting even if you knew you were more than likely negative?

If your test came back positive (regardless of risk behavior), would you keep the result to yourself for awhile to get used to it? What people in your life would you tell first? How would you tell them, if you can imagine it? Would you lie about it to anyone who knew you got tested so they wouldn't worry? [And no - I'm not asking that because I think that has happened to me, although a long time ago I was not told - for whatever reasons (I'm not blaming) - even though several people knew I probably had it from an ex-relationship that had lasted three years with someone who knew he had AIDS at some point. I didn't find out till I was told he was dead. I didn't get the chance to tell him that I didn't blame him, or, if he needed it, that I forgave him for a bad break-up, or that I loved him, or goodbye.]

9 comments:

Merelyme said...

i am really glad you are writing again. we want to hear your stories.

Anonymous Mom said...

i've never been tested, but if i believed i was at risk i would not prefer a rapid test. in fact, i may not even call for the results. no news is good news, for me. i just had a scan of my thyroid looking for tumors on friday. the doctor had the results yesterday. i haven't called her to find out.

yes, i would keep it to myself to get used to it. i would probably tell my mother first as she would deal with it better than my father who would totally freak out.

Merelyme said...

i have thought about some of these questions and you know...i honestly do not know how i would react. i imagine that i would be scared shitless. i have no clue who i would tell. i have a feeling i would be in denial and shock for some time.

Jim said...

Wow.. this is deep and very interesting insights that I am not aware of. I am learning alot from your blog. Thanks for sharing.

Hugs, Jim

whimsicalnbrainpan said...

Thanks for sharing some background.

If I thought I had been exposed I would go for the rapid testing if it was accurate.

I have been tested before and it was negative. I haven't been tested in a while but I do donate blood regularly (I know this is no substitute for the real thing) so I think I would know if I had it.

About the last batch of questions, I don't know if I would tell anyone that I was getting tested to begin with (unless I was seeing someone) so I would probably wait until I was ready before I told people.

+PHc said...

Merelyme, Thank you, as always, for your encouragement. Sorry if I was overwhelmingly hypomanic on your blog. It is informative to me to know that outside my world here where it is talked about all the time, that it is still a scary prospect, not just manageable.

Anon mom _ just what I said on your site. Thanks.

Jim, it is also informative to me outside my world where it is discussed all the time, that some people don't have to think about it.

Whimsy, I would have done rapid testing too. I like to know in general.

Cool you donate blood, wish I could.

Yeah I didn't (and wouldn't) tell anyone I was getting tested. I would want to be private about my decisions. - If I had been private to the well-intentioned treat-as-soon-as-possible clinic I went to after my anonymous test I would have had private health insurance all this time, but I don't know that that would have been fair anyway. And I get good public clinic care and clinical trials.

Thank you all for answering my questions.

Anonymous said...

I've been tested via a rapid test. It was negative and two years later and continued symptoms (but no more exposures), I tested positive on a blood test. They've improved the rapid test since I took it but I still wouldn't trust one again.

I haven't told anyone. Except you know. It wouldn't be accepted by my "friends" or my family. There are still areas of the country where people with HIV are not treated as well as they should be. There are companies who still discriminate against them too.

Since I was infected I have become a recluse and my only wish is to just get my only child raised to adulthood.

The man who passed it to me still hasn't admitted he is infected. One of our coworkers told me.

I'm inspired by your blog. Thank you for sharing. I hope this info helps you in some tiny way.

laughingwolf said...

when i was much younger, i used to visit free std clinics if i remotely suspected i may have been affected [i was not], and would wait for the 'long' results [there were no rapid ones, then]

of course, i told my partner[s] of the results, always, the day i knew

bless your courage and intelligence

+PHc said...

Anonymous,

You can reach me at sfpositive@gmail.com as anonymously as you like. I'll respond more here to what you said about "friends" and family, if I don't hear from you privately.

Yes there are still areas of the country where"people with HIV are not treated as well as they should be," and not even so far away from where I live. And there are areas of the HIV/AIDS service community in San Francisco that discriminate more against people who aren't gay men (MSM) than some of the worst of those places I've experienced. But there are also services most places that can help to some degree with some of the isolation - DEPENDING ON YOUR NEEDS. I am working very hard right now at finding a way not to be a recluse.

I don't know how it is for you, but my biggest regret is not having a child. But I imagine that is very hard on your own - to take care of your own needs, too.

I can't imagine what it must be like, especially if you have to still work with him - what it must be like to know how you got it while it's not admitted.

I hope my blog can help at all. I hope the sharing can help. (I hope the stories I alluded to that I'm about to write don't scare you off.)

Your response helps me tremendously, although I'm so sorry you are alone. I hope you keep in touch via email, or comments when you feel like it.

I wish very much that I could do more to help.