U=U: Is it a key to ending stigma?
Peer Support worker, Melissa Iddles, talks about the wonderfully positive message in U=U that women living with HIV can have intimate relationships without any fear of passing on the virus, provided their viral load is stable and undetectable.
As a Peer Support Worker with Positive Women Victoria, I find that stigma continues to be a serious problem for many women living with HIV, despite decades of advancement in medicine.
Women who are engaged in HIV health care are living longer, healthier lives, having less side effects from medications, are able to experience pregnancy with minimal risk of transmission to the baby, and won’t transmit the virus through sex if their viral load is stable and undetectable (known as Undetectable = Untransmittable, or U=U).
Yet many of the women who we support at Positive Women feel the need (sometimes a desperate need) for secrecy — to avoid being faced with negative judgements about how they acquired HIV, what it means to live with it, and other people’s misconstrued ideas of how HIV is transmitted.
At Positive Women, we are careful about confidentiality because we understand and respect these valid reasons for secrecy. At the same time, together with partner organisations in the HIV sector, Positive Women is aiming to create a future world in which such secrecy and fear would be unnecessary.
I have been reading an interesting booklet from Canada called Women, HIV & Stigma: A Toolkit for Creating Welcoming Spaces. The authors identify four types of stigma:
- internalised stigma
- stigma by association
- social stigma; and
- institutional stigma.
I am going to write a little about internalised stigma.
Internalised stigma is the effect of being HIV-positive on a woman’s self-esteem, as she may feel shame and/or blame. It can be the result of internalising negative messages about HIV that are conveyed through society. Without reiterating negative messages, I would especially like to say that HIV happens to women of all kinds.
There’s also a wonderfully positive message in U=U in that women living with HIV can have intimate relationships without any fear of passing on the virus, provided their viral load is stable and undetectable. But sometimes the negative messages prevail and we find that many women struggle with the question of whether they “deserved to get HIV”.
They may struggle with feeling dirty or unlovable. Sin and forgiveness sometimes come up in our meetings with women as well. Also, women including mothers are frequently concerned with how their HIV status might have impacts for loved ones.
It often takes time to come to terms with a diagnosis of HIV. Getting involved with other women living with HIV can help, which is where we can come in at Positive Women.
You can view the booklet Women, HIV & Stigma: A Toolkit for Creating Welcoming Spaces via whai.ca/resources
Some other contacts that might be helpful:
The Well Project: thewellproject.org
Thorne Harbour Health: thorneharbour.org
Living Positive Victoria: livingpositivevictoria.org.au
The Institute of Many (TIM): theinstituteofmany.org (following the links to TIM Women)
If you would like to contact PWV’s Peer Support team you can email firstname.lastname@example.org.