Minority Resources

[WhereintheworldisCSD?]

Hello all,

Thank you for welcoming me into your community, I am so thankful that a place like this even exists. I am a black woman in a monogamous relationship with a black man. We found out recently that he is positive for the virus as well as herpes, it was prior to our relationship, and so far all of my tests have come back negative. Ironically, I have a research background with the virus, with women, but my research interest never covered (which now it will), support and resources for those in the minority community regarding social aspects and support. I'm not aware of many resources for serodiscordant, heterosexual, minority couples and would love any help, knowledge, or links that any of you could provide.

Although I know the statistics, and I have a knowledge of these viruses, it's a lot different when it becomes your life, and to be quite honest I am scared, I'm scared for him because of the stigma that still surrounds black men, especially and the lack of understanding that people might have, and I'm scared for me as his support system because this is a road untraveled and I like to be prepared for things.

I'm looking forward to meeting many of you and using us support as well as being a support for you as well.

[leatherman]

support and resources

you don't mention where you live, but if you're in the states, the first resource I would suggest is the local Ryan White funded HIV clinic/provider. The Ryan White Care Act is what funds most HIV providers (doctors). Often these providers often mental health services along with various support services, including Consumer (i.e. Patients, ie. people living with HIV receiving services) support groups and counseling.

I'm scared for him because of the stigma that still surrounds black men, especially and the lack of understanding that people might have, and I'm scared for me as his support system because this is a road untraveled and I like to be prepared for things.

Don't overthink this issue. Quite frankly HIV is pretty easy to live with these days. It's as simple as taking the daily meds and ..... just going on with your life. Well, of course if a person is starting off sicker it might take a little bit before just "living with HIV".

As far as stigma, quite frankly. I (as someone who has lived with HIV for about 4 decades and been a peer support counselor and HIV advocate) believe it depends on how much power you give HIV. A lot of diseases just don't show on the outside. You can't tell someone has HIV just by looking at them, so unless you tell someone there really isn't a reason for them to stigmatize you. (I'm using the generalized "you" not "you" in particular. )

For example, a lot of people worry about taking their meds outside their homes, like taking meds with dinner at a restaurant. First, nobody is going to be rude enough to ask what those meds are for; and if they do, it's fairly simple to tell them to bugger off, or simply say they're blood pressure/cholesterol meds or even pain meds. As long as you don't feel guilty and carefully consider who you disclose your medical history to, there's really no reason to receive stigma.

Now, I'm not saying you may not receive some discrimination or stigma (I'm a gay, and y'all are black, so I know you know that discrimination can come, not because of what you do or say or have, but simply by how you look) but unless you go around telling everyone you have HIV, being discriminated because of HIV just shouldn't happen. You just live with life with some extra meds.

so far all of my tests have come back negative.

FYI, when he's remained on meds and stayed Undetectable for at least 6 months, there isn't any chance that you would be infected. (research "undetectable = untransmittable", or TasP (treatment as prevention) for more info)

hope all that helps you and your partner!

[WhereintheworldisCSD?]

Leatherman,

Thank you for that in depth post, to it was extremely helpful! We are in the states and I will definitely talk to them about support groups, I just hadn't seen anything, but that doesn't mean that it isn't there.

I should've prefaced a little better, he's a very well known figure where we are, and my family is well-known, and he's going to have to share the news very publicly because of who he is and the amount of partners he had previously. So I do think that initially there will be an amount of discrimination and scrutiny. You just never want to see someone be judged or hurt based off a mistake and ignorance. I know that the virus is not a death sentence, I also know that many people who will be scrutinizing him could've been in his same position but this just happens to be one of his tasks while he's on this Earth.

Yes, I am very aware about U=U and TasP! I'm very excited to teach so many about these two factors specifically because I think they are crucial in decreasing prevalence and eradicating the spread of this disease.

Also, it's so nice to know that you've been living with HIV for almost 40 years, that in itself is such a hopeful statement she fact. I can only imagine the work you have completed and the things you have seen on your journey here. Thank you so much for all that you did for us to be here and as a support for me right now, it truly means so much to me!

[leatherman]

he's going to have to share the news very publicly because of who he is and the amount of partners he had previously.

A couple things to consider: if he had some other health issue, would he publicly disclose? Cancer? diabetes? high blood pressure? That's what I mean about not giving HIV a significance that it doesn't deserve. Some health issues are just your own and not anyone else's business. A lot of people have health issues that aren't made public. While I was deadly ill for a long time and my first hospitalization led to ALL my family and friends knowing, my husband, who has also been poz as long me, never had serious health issues and HIV just isn't a topic that he's ever broached at work or much of anywhere else. He takes his meds and just lives his life.

As far as previous partners: since HIV is a reportable (to the health department) STI, often health departments will contact people - mainly to make sure people know about how to not transmit HIV and where to get health care and meds. Health departments also do contact tracing. A person can report partners who may have been exposed, and the health dpt will contact those people with a notice that someone that they came into contact with might have exposed them and that they should get tested. All anonymous.

Also, in case misplaced guilt might be the underlying cause regarding the need to disclose, keep it mind it takes two to tango. Every person that might have been exposed is also someone who didn't take their own precautions to protect themselves. Sex is something people do and STIs are something everyone needs to take their own responsibility against. 

 I just don't have any insight on hetero couples dealing with HIV, although I have a little bit of advice about serodiscordant couples. I had thought my 2nd partner was negative. He had said that he was frequently tested in the years before we were together and several times while we were together. At that time, TasP hadn't been proven and U=U was not even a pipe dream. Unfortunately those were the years I was finally recovering from AIDS and the hospitalizations and wasn't as knowledgeable as I am now. When he got sick, with tumors from non hodgkins lymphoma, he was diagnosed with AIDS and we realized he had been living with HIV a very long time. Sadly, that meant he was diagnosed too late for treatment to work in time. sigh

Y'all are in a different position; you know the deal now. Make sure your partner is adhering to treatment; take precautions until he's been undetectable for 6 months, and maybe even consider PreP (that's a med to prevent HIV infection). And definitely make sure that you get tested periodically, even if it's along with your yearly physical or a quick trip to the health dpt for a rapid test. While U=U has been proven, with my history I just think that it's better to be safe than sorry, you know. IF by some bad luck you were ever infected (though the chance is pretty much 0), finding out sooner rather than later is what you would need to help protect YOUR health.

I can only imagine the work you have completed and the things you have seen on your journey here.

ugh. too much. Four decades is a long time. During that time I nearly died several times - on my 36th and 38th birthdays no less. In just a couple weeks when I turn 60, I'm going to also be celebrating 24 yrs since the last time I was in the hospital. Woot! I also lost two long term partners (10 yrs each). My first partner died before the first meds were produced. My second partner died from not getting tested and not getting treated. But I took that pain and became an advocate for people living with HIV. Not only did I speak at local colleges, work health fairs and do volunteer work for the HIV clinic, I joined the board of my state's HIV task force and talked to state legislators getting the state to contribute millions for the Ryan White drug assistance program and to improve the state's sex ed programs. I spent nearly a decade working with both the North and South Carolina (because I live near the state line and my area in SC also receives HIV funding from NC) health departments' Ryan White programs advocating for the needs of people living with HIV (meds, housing, social and mental support). Sometimes I feel like I'm bragging about the things I've done but I did it all, in Randy and Jim's names, so that other people wouldn't die like they did or live the kind of life I did. There's so much missing from people's knowledge about sexual health and I hope I've done some to improve that.

Just a little note: while I've talked about some of the bad times in my life and the loss of my partners, I did learn that life is a precious thing and deserves to be lived! I've been through a lot but I've got a great husband (4 yrs married and 10 yrs together....without him dying on me! LOL sorry. that just some black humor he and I use to joke about my life. I've promised to renew our vows in year 10 to "restart" the clock and make sure this relationship last longer than my others), a house we bought 3 yrs ago, and a great dog. Now I just need another dog (I had SEVEN when my first partner died) and life will be MORE perfect.

Thank you so much for all that you did for us to be here and as a support for me right now, it truly means so much to me!

I can certainly understand that! Back in the 90s when this site started up I joined because HIV information was either scarce or rapidly changing (the advent of HIV meds, dealing with side effects, newer more effective meds coming onto the market, etc). Then when my second partner got ill and passed away, the people I had met here were unbelievable! Quite frankly, I didn't even have the funds to pay for his cremation and people here, from around the world, pitched in to cover the cost. It was that support I got here that made me realize that I wanted to help where I could  in NC, SC ... and here.

Like I said I hope I've been able to help you some and that are plenty of others here that will too. All the best to you!

[Jim Allen]

I just don't have any insight on hetero couples dealing with HIV

I can share my experience, but it's not going to be the same for others. How I deal with HIV and my hetero relationship is I take my HIV meds daily and go to the clinic every six months and move on with my life.

As for Antje, she doesn't get involved; no need, no drama. My HIV status only comes up in our relationship when we are fundraising or discussing insurance, etc.

You just never want to see someone be judged or hurt based off a mistake and ignorance.

You can't control how others will react or think.

All of us are judged daily by others for a variety of things even when simply walking down the street minding our own business. If he shares his HIV status, then sadly some people might (will) be judgmental.