We asked a group of women who had been living with HIV for some time how they had felt and responded when they first received their diagnosis.

“This is happening to someone else” and “Why me?” were followed by shock, numbness, disbelief, fear, anger, blame and shame.

“Feelings of isolation, fear of rejection, anxiety about having a sexual relationship and disclosing my status were overwhelming.”

But for some women, it was a relief to know what had been causing them to be ill.

We then asked the same group “What has helped you to move into living your life as you are now?”

“Speaking with other women with HIV helped me say I’m HIV-positive and [to] be myself.”

“Seeing others with HIV getting on with life and challenging the image of illness and death.”

“Making achievable plans, studying, working and not putting life on hold.”

“A supportive healthcare team.”

“Seeing women with HIV looking well and beautiful was an inspiration.”

In practical terms, many women found counselling, peer support and a good healthcare team helped in dealing with their feelings. Being able to disclose HIV status, having supportive and non-judgemental friends and family, being part of a supportive faith community, and personal faith and spirituality all contributed to feeling they were ‘more than a virus’.

“There is life after an HIV diagnosis.”

Many women are fearful of telling their friends and family about their HIV status. You may fear rejection, violence, exclusion or blame. However, many women find acceptance, and relief at sharing a secret that can otherwise seem like a burden. Partners, family and friends will often be supportive once they know your status. We know that telling another person (often referred to as ‘disclosure’) can help you manage to take your HIV drugs regularly and correctly. And telling healthcare and other professionals, at the right time, can ensure you get the right advice, treatment and care.

It may help you to think of disclosure as a process, and that you can prepare someone to hear about your HIV status. Talk to other women about how to prepare friends, family or partners and get support from your healthcare team and an HIV support organisation. See also the section on Disclosure later in this booklet.