Disclosure Etiquette, Part 3: The Highs and Lows of Telling Your Business

Vanessa Johnson, J.D. This is the third in a series exploring the etiquette associated with telling other people that you have HIV/AIDS.

After being diagnosed with HIV, I decided not to keep secrets anymore. As a result of this decision, disclosing my HIV diagnosis to my family was a lot easier than I thought it would be. The difficult part was telling them everything else -- such as the 25-year secret I'd kept about what had happened to me as a child: that I'd been sexually molested by a family member from age 13 until age 18.

But even 20 years after disclosing my HIV status, and as a veteran working publicly in the field, I recently experienced a disclosure crisis that stopped me in my tracks. I learned that a family member had repeatedly shared with younger relatives the fact that I had been molested, warning them that the molestation may have transformed me into a sexual predator and that they should be careful around me.

Needless to say, I was crushed. I am offended and disappointed that this person, whose identity I will protect, would do something so potentially harmful. I'd believed that my family had made peace about the molestation and was well on its way to healing. Not only have I reconnected with my family, but my disclosure has also created a space for other family members across generations to talk about their own lives.

But I do have to admit that at first this new development felt like a serious setback. I now understand that disclosure is truly forever and that you may never be quite prepared for all the imaginative ways that the information can be used.

The truth is, every day we share information about ourselves with other people -- about our health, our love lives, our families, whatever. And when we do, we never know the recipient's reaction. As much as I want to lash out in anger sometimes, I am mature enough to know that it makes no sense for me to retaliate against someone who may continue to use my disclosure in a manner that I had not originally intended. I cannot control the person or their motivation for sharing my information in the way that they have chosen.

The person I do have control over is me.

And here is what is most important to me: that I do not allow this incident to trigger a relapse into the sense of helplessness and shame that characterized my earlier years, when I reacted to having been molested by drinking, using drugs and being sexually promiscuous. This means that I need to consciously and proactively take care of myself.

I am doing this by first acknowledging and reflecting on my own feelings about this recent incident. This will help reduce my stress level and protect my physical, mental, emotional and spiritual health -- behavioral choices that in turn will support my immune system.

I know that at the right time, I intend to tell this family member that I expected better of them. If they need support or additional education to understand how childhood molestation affects people, I will be very happy to refer them to a specialist. Because just as not everyone with HIV will spread the virus to others, not everyone who is molested molests.

As for the rest of my family? We have done a lot of healing together, regaining trust, respect and admiration for one another along the way. In the final analysis, I will prove to myself and my family the type of person I am by what I do with my life.

The process of living healthily with HIV can bring amazing joy and pain. But when life feels out of control, we can always take care of ourselves -- mind, body and spirit -- and find ways to heal so that we can enjoy the highs and accept the lessons learned from the lows.

Vanessa Johnson, J.D., who has volunteered and worked in the HIV/AIDS field for approximately 14 years, is executive vice president of the National Association of People With AIDS (NAPWA).