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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:

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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.

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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.

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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.

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9 thoughts on “HIV Self-Stigma and Mindfulness – Report from European AIDS Conference Part 2

  1. Self-stigma is as crippling as social stigma. The change must start from within. You have to love yourself, forgive yourself, smile at YOU…before any support the world may offer can filter in. Its the same in every tough situation, be it failing an exam, going through divorce, breaking an addiction, whatever. You need to accept who you are, see where you are at, decide where you are going and the strength for change will come.

  2. Thank you Ifezua so true without self love. Self esteem, self compassion nothing is possible. We totally agree. 🙂

  3. Silvia, so many thanks for writing such a lovely piece – just wanting interested readers to know the programme we are testing in Zimbabwe is ‘Inquiry-based stress reduction/The Work of Byron Katie’ – the technique can be understood here: http://www.thework.com

    My colleague Susan is blogging about the project here: http://inthenoticing.wordpress.com

    best to all,

    Nadine Ferris France

  4. Thanks for your comment Nadine and all your work. I will incorporate the links into the blog just in case readers do not get to the comments.

  5. I do not agree entirely with what is being said about self-stigma. It is correct to believe that you need to believe in yourself and love yourself so that others will love you but the fact still remains that if you are HIV+ and want travel insurance , the premium is more that if you were negative.. That applies also to health insurance. Even today, October 2013 there are still some health professionals who still are prejudiced when they encounter positive people. I am a psychotherapist and I still see people who feel let down by medical professionals because of lack of information.. Also, certain African and Asian countries condemn homosexuality and believe that HIV is a punishment from above…. Not all HIV+ people are homosexuals and unless this is changed stigma will always be there… it was debated that people whose viral load is undetectable might not be infectious therefore, they are not too much of a risk although, these people hopefully still practise safe sex…. High or low viral load people are treated the same as if they have the plague.. EDUCATION is still required. People are getting complacent and assume that everybody is aware of the facts but unreality it is lacking
    Tony Spiteri

  6. Dear Anthony,

    I think we are in total agreement. As a person living with HIV, and having worked supporting others living with HIV, for over 13 years I am more than painfully aware of the levels of stigma, discrimination and violence we face in our lives. This blog is dedicated to inform and inspire people to challenge the injustices we encounter in our everyday lives. To achieve change we need an holistic approach that also addresses the way we feel about ourselves and how we have internalized mainstream negative attitudes towards HIV. Many of us live with crippling levels of anxiety and depression. Mindfulness and yoga are proven interventions which can support people in the path of self-compassion. As people livng with HIV we also have the responsibility of demanding that our human rights are respected, but it is very difficult to do it without the appropriate support and self-love.

  7. Brilliant topic. Self-stigma is the biggest self destuction tool a person has. Its like a big lump in a person’s head that moving it on one side at once is like trying to move a mountain but making a concerted effort of digging on it bit by bit the load becomes manageable. Awareness and practice of Mindfulness is the way forward for people living with HIV.

  8. We all have a responsibility to challenge all forms of discrimination, and work towards positive change. But, I think some of the most important challenges to discrimination and equality are fought in our own minds as we self-limit and self-stigmatise.

    Often there are not distinct divisions and separations between one part of our lives and another, what happens in one aspect of our lives can impact on another. When we are stigmatised and discriminated against it can influence the choices we make of are allowed to make. Even when all those around us have changed it still takes time for change to happen in the wider world and for ideas and behaviours to become the social norm.

    Ultimately, we all have to decide for ourselves what constitutes success and failure and what we value, because the imposing external world will be quite eager to give you a set of criteria if you let it. Money, material belongings, youth, sexuality, physical beauty, strength and health are all sticks we and others may measure us by- and often unfavourably. An absence (or difference) in any of these can leave us feeling inadequate and without a meaningful place in the world.

    For me HIV, and all that has gone with it over the past 24 years (blimey almost a quarter of a century!) is a personal journey. It starts with the awareness of my self-worth and a declaration of my aspirations. Saying out loud the things that I want from life and believing that I am able. It is a search for balance between professional, personal and private desires. Achieving this in my private world, in the privacy of my own head and heart, in my own being can be difficult challenge, but I want to be responsible for my own reality and compassion and mindfulness have helped with shaping this.

    The drive for self knowledge, personal growth and integrity sit beside my need for unity with others and wanting to make a difference for the better – and not just for myself. Life has many dimensions, inner life, social life, family and friends, professional, community, health and all of them make up who we are. For me it’s important to be aware, understand and challenge stigma where ever I find it if I want change.
    x

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