UNASHAMEDLY POSITIVE… 'To disclose or not to disclose, that is the question???’

I was invited along to a HIV Support Group this month, a Woman’s group. I was asked along because of the Artwork I create and because of the fact that I am ‘Out’ and ‘Proud’ about who I am and how Empowered I have become over these years by disclosing my Positive Status and creating pieces of artwork from sometimes ignorant hurtful comments from mostly professional people, people in the Medical profession. People who quite frankly should know better! I took along lots of images of my work and just talked about where I was then back in 2002 and where I am now in 2012. Back in 2002, I was in a state of shock, Fear and Shame. My whole world fell apart and nothing was ever going to be the same again. I like most Women unfortunately are diagnosed very late and have huge Viral Loads and Low CD4 Counts, mine was 40! I was in a bad way and didn’t think that I would leave that hospital alive! I know and I feel extremely lucky to be alive, but I believe this is obviously down to my getting the right medication and adhering to it, but I also believe that my frame of mind has a lot to do with it. I believe in the power of Positive Thinking and when asked recently at an Art Exhibition on talking to somebody about my work and how it came about. She was shocked and said “How come you look so good?” I replied “Through anger and sheer bloody mindedness” very matter of factedly. I think this is always a problem as many people think that this disease is now ok as you can take medication. They don’t understand the importance of taking the medication, the side effects, the fact that you may have to try different drug regimes as some no longer work! More needs to be done to put this over ‘Where are the scary TV Adverts of the 1980s of the Tombstones and the huge words saying AIDS, Don’t Die Of Ignorance’ We need more of these sort of adverts as people have become complacent about HIV/AIDS!!! Education is vital! I know that I have come a long way. Everybody is different. We all have to do it in our own time. I remember meeting Positive people who had been Positive for five years or more and they had it so going on, they were so confident about who they were and it wasn’t the centre of their universe anymore. I was so impressed but also couldn’t believe that I too could be like that? It took me a few years and as I told all these women yesterday...how it gets so easy to disclose after that initial really scary first time when you first tell someone. People in my case have been really supportive and interested to hear about it as apparently I don’t look like someone with HIV??? How can you tell….YOU CAN’T!!! I still get annoyed when after telling people about my status that they still believe and respond by saying that its predominately a ‘Gay Disease’ or something that happens in Africa!!! Education is so important as we need to change these presumptions and this is why I show my Face and tell my tale and know that if many more did the same then we could change things. It does feel cathartic, it does feel empowering. I also inform people how this disease is now predominantly a heterosexual disease and how the over 50’s have been hugely affected as their lifestyles have changed. They have more sexual freedom and unfortunately don’t practice safe sex. Many still fear ‘Disclosure’ but to me it’s like living a double life and lying to those around you. Constantly living in fear that you might get ‘Found Out!’ Also I didn’t want to put Friends in a difficult position and fearing that they may say the wrong thing to someone? So to me, disclosing was and has been the best thing ever. I have no control of the Virus itself but I do have control over the way I choose to use it and be outspoken about it and raise awareness through the Art I produce. I came away from the Support Group, meeting some amazing Positive Women, all different but all having that one thing in common, HIV. I do hope that these Women will get to that point when they too can feel strong enough and empowered by disclosing as I know it will change their lives forever. Mandy Art is Life, Life is Art




Dianne's picture

Wonderful blog! My sentiments exactly I am one year from diagnosis and feel if I dont be out and proud how are we going to dispel myths and stigmas attached to positive women? You are so right it is about the mindset and how we approach HIV living with us... I think the more women speak up the better educated community will become and we will lessen the stigma. I will march side by side with you as a fellow HIV sister to educate as many as I can. A woman at my positive group the other day suggested that a few have tried being public and had no effect here in Australia. I thought about that and decided if we all take that approach it is a loosing battle we will not bring change, sisters like yourself inspire others to step up and come out and the more women become empowered to be open about their health status the more effect we can united SHOUT and WARN other women.


mandywebb66's picture

Thank you Dianne.

You are so right about each of us speaking up about this disease and the more of us that do this can change the situation. It is scary but also empowering and a lot of Women together is scary, but a lot of Outspoken,Proud Positive Women is Bloody terrifying lol.
Keep SHOUTING and You will be heard
Keep WARNING and you will make changes
Stand by your Positive Sisters and be Proud


mirriam's picture

My dear sister,
that was a very good work there just keep on SHOUTING, They will hear u whether they want it or not.

Keep on the fight


iLOVEiLIVE's picture

Thanks for writing..

As for me, I don't find it a problem to disclose (having just been diagnosed earlier this month), but I am going very selectively who I tell as in my industry, people sees and people talks. Somehow someone I know will know someone who knows me.

So yeah, I am not so much fearing if they might say the wrong thing to someone, because I had in the first place in control of who I tell and knowing that it won't bother them as much as it does bother me.

Last but not least, at my stage, my doctors are adopting a wait-and-see approach having just only had my first readings done. Will need to wait till June for another round of tests and see if there's anything abnormal about the readings..

I was diagnosed with a reasonably high CD4 and also fantastically high VL; which apparently is quite consistent with the time after seroconversion - about 3 months..



david lulasa's picture

anyone who uses such knowledge to condemn the patient is just wasting precious time..better feeling pity,though its not the best to do when someone is sick..give hope and you shall have hope.

LULASA...obama barack


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