Community life competence
Connecting local responses around the world
Disclosure- a turning point in my life
One of the tools I have been using to work towards "normalization" of HIV is disclosure. I have come out with my HIV+ status to show those who considered HIV as pertaining to excluded populations that HIV can come into anyone's life.
I got the impression that people around could not see HIV as related with 'normal people'. So I decided to go public so that I could show others that it could happen to anybody, it was among us in our communities. I think that the use of that tool is required only as long as there is not a high level of acknowledgment and recognition.
Who was the first person I disclosed to?
The first person was one of my friends, a nurse by profession. She did not know personally about HIV and I had always been very protective towards her. So I prepared myself to tell her by challenging my own fears so that I could reassure her that everything was going to be alright. When I told her about my diagnosis, she was very upset but I could transmit my confidence.
What was the impact on my friend? On our friendship?
She was very shocked thinking that I was going to die. But when she saw me trying to explain to her about the future, she realised that we could talk differently about it. She told me that when we could talk together she felt reassured. The fear came back when she was alone and thinking of the limited possibilities she was able to find on her own.
Yes, she told me she was very scared about me, but not about herself. She did not think about the possibility of getting infected and still she has not gone through testing yet. That is one reflection I keep doing about acknowledgement and recognition. I think she included HIV as a possibility, as something that was around her, but she did not consider it necessary to go through the test. In some ways she introduced HIV in her life as something real but not as a threat.
She has been through cancer after that, and she told me she felt differently about illnesses. She still is one of my best friends.
Impact on me/the discloser
In that way, I gained my own confidence. I found ways of looking for the best instead of thinking of the worst. Then I told another friend and it was easier that time. I did not tell my family yet, because it was difficult for me to address so much at that time.
It was very important for me to disclose because I think that the secret would have been a heavy burden. It helped me in realising how many good friends I had and how rich I was for that.
Disclosure can play a key role in prevention but goes hand-in-hand with support
Also, when I had to tell to one of my brothers I could feel that he changed some of his attitudes towards life. He went through testing because he wanted to donate blood for me, especially when he is so terribly scared of injections (that is about love and acceptance!).
Disclosure can be a very powerful tool provided that the positive person is well supported and strong to do it. I think that it is all involved: I think I could be so powerful in giving support to my friends and family because I could feel their support and love for me. Of course, it is a hard time for all, but having confidence in your environment makes you feel ready to deal with the diagnosis and with disclosing.
Disclosure as a tool for advocacy
I decided that having the support from my beloved ones I could go public and I decided to explain myself in a newsletter for PLHIV. And at the same time, seeing one powerful and confident makes other friends and family members go through the process with less fear and more openness.
Level 5 of recognition and acknowledgement will be when nobody needs to go public for the sake of advocacy
A real sign of acceptance of the role of HIV in our communities would be that there was no need for HIV + people to disclose (unless they desire to share their status for personal reasons) because all members of the community shared the same knowledge and responsibility, independently of their serostatus.
I think that nobody is exceptional or everybody can be exceptional when provided with the right environment.
(My warmest thanks to Rituu for the interview and compiling that shaped this story).
I got the impression that people around could not see HIV as related with 'normal people'. So I decided to go public so that I could show others that it could happen to anybody, it was among us in our communities. I think that the use of that tool is required only as long as there is not a high level of acknowledgment and recognition.
Who was the first person I disclosed to?
The first person was one of my friends, a nurse by profession. She did not know personally about HIV and I had always been very protective towards her. So I prepared myself to tell her by challenging my own fears so that I could reassure her that everything was going to be alright. When I told her about my diagnosis, she was very upset but I could transmit my confidence.
What was the impact on my friend? On our friendship?
She was very shocked thinking that I was going to die. But when she saw me trying to explain to her about the future, she realised that we could talk differently about it. She told me that when we could talk together she felt reassured. The fear came back when she was alone and thinking of the limited possibilities she was able to find on her own.
Yes, she told me she was very scared about me, but not about herself. She did not think about the possibility of getting infected and still she has not gone through testing yet. That is one reflection I keep doing about acknowledgement and recognition. I think she included HIV as a possibility, as something that was around her, but she did not consider it necessary to go through the test. In some ways she introduced HIV in her life as something real but not as a threat.
She has been through cancer after that, and she told me she felt differently about illnesses. She still is one of my best friends.
Impact on me/the discloser
In that way, I gained my own confidence. I found ways of looking for the best instead of thinking of the worst. Then I told another friend and it was easier that time. I did not tell my family yet, because it was difficult for me to address so much at that time.
It was very important for me to disclose because I think that the secret would have been a heavy burden. It helped me in realising how many good friends I had and how rich I was for that.
Disclosure can play a key role in prevention but goes hand-in-hand with support
Also, when I had to tell to one of my brothers I could feel that he changed some of his attitudes towards life. He went through testing because he wanted to donate blood for me, especially when he is so terribly scared of injections (that is about love and acceptance!).
Disclosure can be a very powerful tool provided that the positive person is well supported and strong to do it. I think that it is all involved: I think I could be so powerful in giving support to my friends and family because I could feel their support and love for me. Of course, it is a hard time for all, but having confidence in your environment makes you feel ready to deal with the diagnosis and with disclosing.
Disclosure as a tool for advocacy
I decided that having the support from my beloved ones I could go public and I decided to explain myself in a newsletter for PLHIV. And at the same time, seeing one powerful and confident makes other friends and family members go through the process with less fear and more openness.
Level 5 of recognition and acknowledgement will be when nobody needs to go public for the sake of advocacy
A real sign of acceptance of the role of HIV in our communities would be that there was no need for HIV + people to disclose (unless they desire to share their status for personal reasons) because all members of the community shared the same knowledge and responsibility, independently of their serostatus.
I think that nobody is exceptional or everybody can be exceptional when provided with the right environment.
(My warmest thanks to Rituu for the interview and compiling that shaped this story).
Comment
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Comment by Liz Tremlet on February 11, 2010 at 12:56pm
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Thanks so much Marijo your openness and life spirit which gives strength to others that aren't able to be open about their status. It is really something to think about even for those that aren't HIV positive are the circles we move in really as understanding and tolerant as we would like them to be? are we ourselves? I once did an exercise with a group of "openly" positive women in the UK (there are only about 8 of them) and not one of them gave themselves more than an 8 out of 10 for openness meaning there were still lots of places where they were unable to be open, particularly relating to their children. Stigma and tremendous shame is still so much alive everywhere around HIV I sometimes wonder if we know what we want to move towards, what will it look like. I do believe in humanity and that one day we will live in a stigma free world where as Marijo says a value added of HIV advocacy isn't HIV+ status.
A luta continua!
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Comment by Ezeilo Cornelius Ikechukwu on September 14, 2009 at 12:32pm
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I started the spread of message of HIV in my Secondary school days as a Peer Educator and later Graduted to Peer Educator Trainer during my post university service. I am still working in this direction uptill date hoping to stop the spread and the progression of HIV/AIDS in the globe.I have promised to keep the promise and to shun stigmatization and discrimination against people living with HIV/AIDS possibily put smiles on the faces of the infected,affected and the down-trodden people.May God Help Me!
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Comment by Gaston on August 26, 2009 at 4:25am
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Thanks MariJo for really deepening my understanding on this important issue. I noticed my perception of the 'purpose of disclosure' was limited and this posting met my need to know the deeper meaning of it. Thanks for that.
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Comment by Laurence Gilliot on August 21, 2009 at 4:27am
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Marijo, thank you for sharing your deep insights on life :-) You are such a profound person, with many experiences that you turned into opportunities.
You have a special place in my heart, my friend. You are an inspiration for all of us.
Laurence
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Comment by Rituu B. Nanda on August 20, 2009 at 7:30pm
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My dear MariJo,
What a powerful sharing! It led to a deep discussion with my mother where we both acknowelged how we all are vulnerable to HIV.
Love,
Rituu
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