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Newly Diagnosed? Words of Encouragement from HIV-Positive Women

January 15, 2013


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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Reader Comments:

Comment by: Marcia S. (EO,New Jersey) Sat., Jan. 14, 2017 at 10:59 pm UTC
It took me years to except my status, and more years to realize it is not a death sentence if I take my meds and do what my doctor says.
I was diagonios in 2009, and doing much better.
now undetected,I am still in counseling, If you need it get it,No shame.
Hang in there.
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Comment by: Edward (Detroit, MI) Wed., Dec. 21, 2016 at 7:19 pm UTC
Hello lovely women I am an HIV positive male hoping that I would be able to have a child some day. I always kind of figured since I was positive that would never happen for me and that my dream of having a child was forever crushed. I would love for my legacy to continue once I'm long gone. So if you have kids then you are very bless no matter what. But knowing Their are other women out their that's HIV+ gives me hope and may wants kids as well. So don't let anyone discourage you saying "No one would ever want you" because I would be one of those ones that would adore creating a blessing with you rather sex is involved or not.
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Comment by: Linda (Van Wert, Ohio) Sat., Oct. 15, 2016 at 6:40 am UTC
I diagnosed in 1989. My husband and I had been married for ten months when he got deathly sick. When we'd argue he'd say, "I've got a surprise for you and you ain't gonna' like it." I always thought he was leaving. On his death bed he said, "Baby, when I'm gone ain't no other man going to want to touch you." Nothing about being sorry or that he loved me. I found out after I diagnosed that he knew all along he was infected. He just never shared that with me. I was 41. His words have rung very true. I remain widowed.
I didn't cry for weeks. My big mental memo to myself was to beat it. When I was told I had to start meds, I cried for days. I am the sole surviving charter member of the first ladies support group in Cincinnati. All my friends are gone.
Things to remember when you first diagnose, don't tell unless you have come to grips with the diagnosis. Be able to answer questions. Be able to stand up for yourself. Choose a doctor wisely. Check out the staff. Are they there because they care or do they need a pay check. Take your medications. Keep a diary of any side effects. Eat right. Get away from fast food and soda. Don't smoke..marijuana is ok. Don't drink to survive. Laugh. I went to a camp ground south of where I lived and screamed. I screamed until I couldn't talk, took some pictures of the fall foliage and went home. I kept my job. I retired when I was 65. I am now nearly 69.
Don't worry about others as much as you worry about you. It will work out. The dying years are behind us, but due diligence is the phrase of the day. God. If you thought this is some way He is punishing you; let go of that thought. It's your cross to bear and a cross to share with others who see your struggles and your victories.
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Comment by: Anonymous Sun., Mar. 27, 2016 at 8:02 am UTC
Stay positive and God loves you.
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Comment by: huet to the core (California) Mon., Mar. 24, 2014 at 3:54 pm UTC
I just found out on rhe 13th of March that I have HIV I have not had time to sink it in can't break down cause I have kids but I am dying on the inside I feel like I might explode I just don't know what to do
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Comment by: Eric (RSA uMlazi ) Sat., Jun. 22, 2013 at 4:36 pm UTC
Keep up the good work people.God bless
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Comment by: Siya (Mthatha) Thu., Apr. 4, 2013 at 12:23 pm UTC
My wife and I have just got the news a few hours ago, I don't know what to say to her cause she seems to be taking it harder than I am. There's only one thing I can promise her and that is to be the best husband she could ask for. It's not going to be a walk in the park in the sense that our families are very conservative and we both feel they would not accept us or look at us the same way.
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Comment by: patti (new york) Mon., Mar. 11, 2013 at 3:24 pm UTC
I am an HIV positive women diagnosed 1992 and had my HIV negative daughter in 1996.. I was an activist for a while but have been out of the loop for a while. I am encouraged by you all to get involved again. I want to say thanks for the words of encouragement and for continuing the fight of bringing awareness to all women. You are all heros.
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