HIV disclosure is more than a one-time conversation

Decades after the emergence of HIV, disclosure remains one of the biggest challenges for women living with HIV. There’s nothing easy or straightforward about it. When thinking about whether to tell someone about their HIV-positive status, women must consider a range of possible results, for themselves as well as their families.

Some women find that disclosure can help bring peace of mind, with more freedom from fear and stress. Being able to talk honestly about their health and get day-to-day support can be a relief. Very close relationships involve sharing, vulnerability and listening, and sometimes women find that disclosure leads to more open discussions, tighter connections and stronger intimacy.

But for others, the consequences of disclosing can be devastating. Women may experience rejection and abandonment, leading to social isolation and loss of intimacy. They may be accused of promiscuity, drug use, or sex work. They may lose access to their children, housing or money. Or they may live under threat of losing these things. Emotional and physical abuse often starts, or becomes intensified and more frequent. In some cases, disclosure is lethal.

For women who don’t want everyone to know their status, confidentiality is a concern. Women in small communities (a rural area, small town, or distinct population in a city) may worry about word getting out and the ostracism that can follow. This same concern can affect women who have migrated and have links to family and community in other parts of Canada or in their home country.

Without a doubt, disclosure is complicated, and the social, emotional, economic and physical implications are very real. Each woman living with HIV must decide for herself whether disclosure makes sense. What could be good about telling? What could be bad? And what could happen after disclosing?

Planning is one of the most important parts of disclosure. We encourage women to decide how they want to disclose instead of spontaneously telling someone that they have HIV. This will also allow them time to make sure  they’re ready to share the news.

We also recommend connecting with an HIV organization and talking with a support worker or peers  to help  women make a plan for before, during and after disclosure. What to say, when and where, are a few of the big questions we encourage people to think about. For women, safety considerations are also paramount; even if a woman hasn’t experienced abuse from her partner or family, it is valuable to develop a safety plan and be ready to act on it if needed.

Disclosure is more than a one-time conversation. It’s an ongoing process, one that women living with HIV will negotiate throughout their lives.

To help women through the process of disclosure, Positive Women’s Network, in partnership with the BC Women’s Hospital + Health Centre, has developed a series of booklets on disclosure.

You can order copies for your organization through the CATIE Ordering Centre:

Erin Seatter works in knowledge translation and exchange at Positive Women’s Network, the longest-running women-specific HIV organization in Canada. She’s also a dessert lover, as long as it’s chocolate.