Health/Fitness » HIV/AIDS

HIV+ & Out Requires Patience

by Rodney Rodriguez
EDGE Media Network Contributor
Wednesday Nov 27, 2013
HIV+ & Out Requires Patience
  (Source:Thinkstock by Getty Images)

George's brother had been living with HIV for 19 years but only told him weeks before he died. "He said he got tired of taking the medication," George told EDGE. "I'll tell you the truth though, it was the secret that killed him. He just felt like he couldn't tell anyone."

Some people never tell anyone -- friends, family, co-workers, and clergy -- that they are positive. They fear everything from being rejected by loved ones to facing overt discrimination or just being treated differently. Or they may believe that disclosure will forever bar them from romantic involvements.

Either way, they face a life of loneliness and isolation. For some of them, like George's brother, the burden can ultimately become too onerous to bear.

Those who choose to be open about their status have to weigh the need for support or comfort against possible rejection. Ultimately, they decide, like Steckler, that it is more important to include close friends and family in such a deeply personal and important moment in their lives, taking a chance that they will be so unfeeling as to cut ties.

Working with HIV-positive veterans for more than 10 years in San Diego, Ted Canterbury, a social worker who specializes in infectious diseases for the Veterans Administration, has seen the toll secrecy makes on people like George's brother.

"Living in secret is typically not healthy," Canterbury said. "It tends to cause more stress than simply being open and telling the truth. Many people spend inordinate amounts time worrying about how terrible things might go. Once they actually disclose, it typically isn't as bad as they made it out to be in their own mind."

Canterbury cautions, however, that being open about one's HIV status can also come at a cost. One never really can know the result of disclosure until it actually happens, he added.


Telling Partners. Or Not.
  (Source:EDGE Image Library)

Telling Partners. Or Not.

Women like Janice Steckler face the possibility of losing their spouses if they disclose. Steckler told EDGE she was certain her marriage was over when she tested positive.

"Telling my husband, and then having to tell my kids, was the hardest thing I have ever had to do," she said. "I thought I would never see my kids grow up, graduate, get married, or have kids of their own.

"I thought he would leave me," Steckler added. "And he almost did. We had a lot of conversations, ongoing conversations, about what it meant to live with HIV for me and for him. He came around but it took a long time."

Today, she looks back and realizes that disclosure was a process, "one day at a time, one person at a time, one conversation at a time."

One of the biggest issues Canterbury sees every day is whether to disclose to potential dates. "Some people like to make it known right away so they can weed out people who simply won’t be accepting," he noted. "Others like to wait until they know the other person better."

For Eric Hufford, it was the HIV-negative partner who feared rejection. "I’ve had a few jerks in dating situations," he related, "but a guy I dated for four years was afraid I’d turn him down because he was negative. That was trippy and unexpected."

Hufford’s experiences have taught him to "always tell a sexual partner, the sooner the better so they don’t waste your time."

It is a little less cut and dry to Canterbury: "On the one hand, it is incredibly personal information to share -- which we don’t usually do on a first date). On the other hand, it can be painful to develop feelings for someone and then get rejected simply because the other person can’t handle dating an HIV-positive person. There is no easy way to do it across the board."


Why You Should Disclose
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Why You Should Disclose

Knowing whether disclosure is right for you can be tricky. Everyone’s experiences and social support networks are different. For most, just feeling the need to talk is sign enough that it is time to disclose. Still others will wait for an opportune moment or until the need is so great that it can no longer be avoided.

No one can tell you when the time is right except for yourself, but it is important to take that opportunity when it is presented.

"Letting others know what is going on in your life makes it so much easier to ask for help when you need it," Canterbury said. "Let people know what is going on with you that way, if you really need their support, it will be less of a shock for those around you when you ask for their help."

There will come a time when that help or support is needed, not just wanted.

"The overwhelming majority of people I have worked with over the years end up having positive experiences from disclosure," explains Canterbury. "Yes, they may have some bumps along the way and some hard spells. However, after time, they are usually less stressed, more supported, and have found the people in their life who are truly supportive."


Easing the Way
  (Source:Thinkstock by Getty Images)

Easing the Way

When you are ready to disclose your status to those around you, there are steps you should take to make the process easier:

• Talk to someone else who is HIV-positive. Canterbury’s first question to someone newly diagnosed is, "Do you know anyone else who is positive?" Having walked in those shoes, they understand better than anyone what you are feeling.

If you don’t know someone positive, assess who might be a good first person. It’s equally important to have a backup, someone on your side on whom you can lean if it doesn’t go well.

• Realize that not everyone need know your HIV status. While you shouldn’t hide it, understand that a few will be better off not knowing.

• Prepare what you want to say in advance. "Be proactive and ready to answer their questions," Hufford advised. Chances are, people will have a lot of questions for you. Try to have answers at the ready for often-asked questions.

• Don’t take their questions, misunderstandings or ignorance about HV to heart. They may simply be trying to understand a situation they have never encountered or have only heard the myths.

But don’t be afraid not to answer some questions. "There can be fear or shame in how one contracts the disease," Steckle said. "I find oftentimes people want to ask me how I caught it. I just don’t think that matters."


Dealing With the Past
  (Source:Thinkstock by Getty Images)

Dealing With the Past

Still controversial is Hufford’s advice to "own your status. Most of us are positive because we made bad choices," he said. "We aren’t victims. The sooner you own your part in your situation, the better your piece of mind."

What happened in the past is in the past, Canterbury stated flatly. The focus should be on maintaining your current health.

That said, "There can be healing in taking responsibility for one’s actions," Canterbury added. "If your actions contributed to you contracting this disease, there can be a freedom in being honest with yourself."

When Hufford seroconverted 13 years ago, it was no accidental encounter. In his late teens, he was partying heavily and doesn’t hesitate to call himself a "bug chaser," the controversial term for someone who actively seeks out infection. "It was a bragging thing to get more partners," he told EDGE. "It’s sick, I know now."

Being HIV-positive isn’t just a status, it’s a process, and how you come to deal with the past may change over time.

Above all, you need to have patience with yourself and others. Follow up with people; remember that it will be a shock for loved ones. That reaction doesn’t make them bad or insensitive. They need to learn acceptance, and helping them will help yourself.

In time, you will learn that you can lean on those who know -- as well as being there for them to lean on.

"Letting people know you are positive," Canterbury explained, "allows an opportunity to create a deeper relationship. Of course some people might freak out, but being honest gives the potential for strengthening a relationship."

George’s brother regrets that he was never allowed to be that shoulder to lean on.

"I wish he were here so I could tell him I love him," he said. "I wish I could understand. I wish I could have taken this secret from him but it was his, not mine. He might still be here if only he had been ready to let it go."


Living Well with HIV

This story is part of our special report titled "Living Well with HIV." Want to read more? Here's the full list.


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