On the last day of the 14th European AIDS Conference I attended a session with the seductive title of: Sex, Drugs and Stigma. Last to present was Nadine Ferris France, from Ireland. She gave a presentation which I found really useful: Self-Stigma: An Unspoken World of Unspoken Things .
As Nadine stood on the podium she said:: “Please close your eyes and answer the following question, by putting your hand up: ‘ Have you ever had the thought:, even once in your life?
‘I am not good enough’
I think most of the room put their hand up.
Nadine reassured us : ‘You are all expert on Self -stigmatization then!”
I know this thought intimately. From well before I was HIV positive. And when I learnt I was HIV positive, it only became stronger and louder.
This slide with an quote from a person living with HIV speaks loudly of the gloomy inner landscape many of us face for years after a diagnosis:
In the groups I facilitate at Positively UK I encounter a great number of people that continue struggling under the weight of negative thoughts associated with being HIV positive. I can’t have a partner. I can’t tell anybody I have HIV . I can’t do the job I want. I can’t have sex. etc. Those negative thoughts often impact on our ability to talk to those close to us or access support. Some recent research shows that actually stigmatizing thoughts are stronger and more widespread among people living with HIV that among the general population.
However, HIV research, so far, has paid very little attention on understanding and addressing ‘self-stigma’. Nadine is working on a program based on mindfulness to support people with HIV re-educate their minds to disengage from those limiting and damaging thoughts. The program has been piloted in Zimbabwe and it is based on ‘Inquiry-based stress reduction/The Work of Byron Katie’ – the technique can be understood here: http://www.thework.com,
Obviously we cannot focus exclusively on self stigma. Advocacy against social stigma and discrimination is still crucial, but it can only happen if we are able to overcome the negative feelings we have towards ourselves. For example we must continue advocating for better support for women living with HIV experiencing gender based violence. But addressing Self -Stigma with women with HIV who experience violence can play a central role to support and enable women to escape violent relationships.
Nadine’s presentation made me reflect that in my personal journey living with HIV and becoming an activist two things paid a major role: first, access to high quality, well- structured peer support, second, my yoga practice. Peer support gave me confidence, role models, and a sense of connection to a community that inspires me. Yoga gave me a way to reprogram my mind, to recognize that my thought processes are often just fruit of compulsion, that the mind is just a thought producing organ, and often our thoughts are not ‘true’’. Through Yoga I started seeing the relationship between my breath, my ability of being in the present moment, and freedom from negative and limiting believes about myself and the world.
Watch this space to see my next steps in integrating peer support, mindfulness and activism!
For more extensive and in-depth coverage of the conference:NAM website.