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Word on the Street

From Me to You: Tips on Dealing With an HIV/AIDS Diagnosis

HIV-Positive People Share Their Experiences and Offer Advice


Heidi Nass

Heidi Nass, Madison, Wis., diagnosed in 1996

I don't know what advice I would give them. I really try to listen to where people are at.

I mean, it's no coincidence that one of my least favorite expressions -- and my husband can testify to this -- is, "You know what you need to do," because my reaction is always, "Really? What do I need to do? You know my situation so well you're going to tell me what I need to do?"

I'm interested in hearing what you think I should do, what's helped you. I'm very open to that, but for someone to say, "You know what you need to do, here's what you should do," it just rubs me all wrong. I couldn't possibly know someone well enough to say that. I find it surprising sometimes that people are so quick to do it.

I really just try, frankly, to listen. I'll ask someone who's newly diagnosed, for example:

  • What do you find yourself thinking about?
  • What would you say is your dominant feeling lately?
  • Are you feeling sad?
  • Are you feeling excited to figure this thing out?
  • Are you feeling anxious?
  • What are your friends saying about how you're doing?

Everyone's different and people articulate different things. In doctors' offices I think sometimes we, the staff, feel like we know this person. We don't know this person! We know the person who comes to us to go to a doctor's appointment. We don't know the person when they leave here, we don't know that person when they're with their partner or their children or friends or at church. We don't know them. We're not the same person in that doctor's office that we are when we're talking to our best friend on the phone. For us to think we know this person very well is really a false presumption. I don't think it's possible, mainly.

I think we can get to know people very, very well and create a safe place where they can be themselves. From there, we can go great places. I'm just very cautious of imagining I understand somebody just because we happen to share a diagnosis: "Here's a little tip sheet that I've come up with for you based on my experience."

I try to share these things when they're appropriate and when people ask me, but I'm really more interested in figuring out where they're at and, from there, sorting through with them where some places to go from there might be. I suppose if I'm doing anything in those first visits it's just by my very presence as someone who's now been infected with HIV for 13 years, demonstrating that one can be healthy and engaged in a life they love and have HIV. I want them to know that that kind of life is possible for them. If I'm doing anything consciously, I'm aware that that's probably happening.

I want to role model. I want them to know that based on their experiences with me, at least, there's many different ways to do this and there's lots of information. There are a variety of ways to stay healthy and well, and places to get assistance with any part of it, and that this can be, ultimately, an opportunity to do things that maybe, on some level, you always wanted to do differently and just never did.

HIV can really change people, because it presents this opportunity to ask a very conscious question: Who do I want to be with this? I felt like it was, in a way, a wake-up.

As I said, I don't think I did anything differently than other humans in terms of how I got HIV, but I feel like there's always an opportunity to say, "How did I get here?" Always. No matter where you are. Whenever it's someplace you're not particularly happy with or pleased by or it feels very good. It can be that experience for people if they allow it to be. For me, it brought into very sharp relief what's important.

I used to joke in a dramatic way when I was newly diagnosed: "I don't have time for that." It was a joke and I was being flippant but, at the same time, part of it was true. I really felt like, "OK, how am I going to do this? What is important? Who's important?"

HIV allows you to see, through people's reactions, who they are. Trust me, if they reacted with fear to this, they're going to react with fear to other things. It's a good thing to know. It doesn't mean you have to ditch them or you can't work through it, but it's good to know. I don't see any harm in knowing. It can be painful, sure, but pain doesn't kill us. There are many, many places to go with this diagnosis that we might not have gone, frankly, without it.

If someone said to me tomorrow, "We're here to take away your HIV." I would say, "OK!" I really wouldn't hesitate a moment. I would also, after they left, probably start grieving some things that I really feel I got through having this diagnosis that I'm not convinced I would have otherwise gotten. That's my personal belief for me.

Meaning not focusing on petty stuff, things like that?

Yes. Bringing people I valued closer to me, paying attention, trying to be more present, which is a constant challenge in this world, especially for over-thinkers such as myself. But being aware, life is short. No matter what you have, there's not a lot of life. There's a lot to be present for and enjoy, take in, and be grateful for. For me, it was a bunch of that, and it was also being very conscious of my time. What's worth my time? That's probably the place I noticed it the most, what's worth my time. Some of it was just given to me in terms of understanding who people are based on their reactions to my diagnosis, for example. That's something I just started noticing: Wow, this is really something. This is a good way to sort out where somebody's at.

When I was newly diagnosed and I complained to a friend, saying, "Who's ever going to want to be with me? Now I have this" -- she would say, "Are you kidding me? You have supreme quality control right now. You get to find out really quickly what somebody's made of. You don't have to mess around. You don't have to waste your time."

In a way, I think she's right. You don't have to waste your time.

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