Tag Archives: disclosure

A Child, growing up with HIV: Clinics with codenames and secrets from schoolfriends

dannygermain1
For many years Daniel was told that he had bugs in his blood and needed tablets and regular blood tests to control them. At 11, his HIV diagnosis was revealed – and he was told to keep it a secret
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One of Danny Germain’s most treasured memories is being 5 years old, cuddled up on the sofa with his mother Millie, watching a documentary about polar bears.  Millie Germain, a New Yorker of Puerto Rican heritage, passed away the next day.  She was HIV+ and died of AIDS-related complications.

Millie had met Danny’s father, Richard, when he was working in New York.  He fell in love with this bright, vibrant Latino girl, they were married, and soon after she found she was pregnant with their much-wanted first child.

It was during routine pregnancy blood tests that an anomaly was found and further investigations revealed that Millie had HIV. Richard tested negative. She had probably contracted it from a previous long-term boyfriend. It was 1992 and the medical world was still learning about the virus.

Millie and Danny as a child

Millie and Danny as a child

When Daniel was born there was a 1 in 6 chance he would also be HIV+ but his parents would not know that he had also contracted the virus until he was 18 months old. Millie, wracked with guilt for passing on the virus to her son, was becoming progressively weaker.  By this time the family were living back in Richard’s home town in rural Suffolk and the family struggled to manage the care needs of a feisty toddler with his mother’s deteriorating health – all the while keeping the truth behind Millie’s frequent hospitalisations a secret.

During the early nineties, the stigma around HIV/AIDS was as strong as ever, it was seen as a disease of promiscuity, drug use and the gay community. After Millie passed away Richard had to protect his little boy and carry the burden of keeping his diagnosis a secret.  Even the hospital clinic had a code name so that it could not be identified, and the doctors and nurses who chose to work there were considered exceptionally brave by their colleagues.

For many years Richard explained to Daniel that he had bugs in his blood and needed tablets and regular blood tests to control them. At the age of 11, he was told that these ‘bugs’ were in fact the HIV virus.  He was also told not to tell anyone.

In the intervening years Richard met Marion, who became a supportive stepmother to Danny.  Richard and Marion had two daughters, Danny’s sisters, and with the help of medical advances Danny’s daily cocktail of drugs reduced the virus in his bloodstream to undetectable levels.

From the moment he learned that he was HIV+, Danny wanted to tell others – but he knew he had to keep his status secret to protect himself from the prejudice that surrounded the disease.  For him the burden was not the disease itself – he was leading a full life, going to school, skiing, scuba diving, and blood tests and daily medication seemed minor inconveniences in the grand scheme of things – but the stigma attached to it.

On graduating from university, Danny began a career as a freelance photographer and film maker, and had become frustrated at living with the secret any longer. He knew from all those clinics he attended as a child that there were lots of other young people like him who were also carrying with them a similar burden of secrecy.

And so, on the anniversary of his mother’s death, he publicly announced his HIV status in a film project titled 27.11.15. He visited aunts and cousins, university friends and extended family members and told them his secret in person. With his father and Marion at his side, he told his teenage sisters. Finally, he went back to speak to the doctors and nurses who had first treated him as a child, and the medical staff who had cared for his mother.

What is obvious in Danny’s story is the love, hope and indeed the normality possible after a diagnosis of HIV. Put simply, it is simply unacceptable that surrounding prejudices are now more of an issue to sufferers than the condition itself. In 2015, we have a responsibility to address this shocking truth.

Danny and Marion

Danny and Marion

 

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Dating, HIV & You

Dating is a tricky area of vulnerability, intense emotions and fear, as well as a very real risk of rejection for anyone. When HIV and/or AIDS is involved, the vulnerability, fear or risk of rejection and intensity of emotions can be ramped up high enough to cause serious anxiety.

Some people who have been diagnosed with HIV/AIDS prefer to date others with the same diagnosis. This can bring tremendous relief, as discussions around this topic are not, for the most part, bound to be taboo, and the physical, emotional, spiritual, family and medical struggles and challenges that are shared may create a profound sense of communion and understanding.

Others are open to dating people without a diagnosis of HIV/AIDS and this brings up a whole host of confusing issues and multiple questions which must be answered.

Should you disclose your diagnosis? If so, when might that be appropriate? If not, is that all right, or even fair or ethical to your partner or potential partner? If you are taking medication and practicing safe sex, are you still contagious and can you spread this disease to a potential partner?

These questions bring dinner, movies, music, romance and long walks on the beach to a whole other level, one in which illness and questions of contagion and mortality are turned over and over in one’s mind. The sources at the bottom of this page can lead you to find answers to many of these questions, and I will attempt to briefly touch on them here.

Firstly, any dating relationship would thrive in an atmosphere of honesty. After all, if you are looking for a real connection with another human being and not merely for a quick romp in the bedroom, having HIV/AIDS and living with that reality would be a very important part of your life.

While you don’t need to disclose this on the first, second, or even third date, if things are getting more serious or leading to a sexually intimate relationship, disclosure is important. Not only that, but if you are dating someone whom you feel would not be able to handle hearing about this condition, you must ask yourself why you are putting yourself in that position to begin with.

Why are you choosing to date a person who will not accept you in your life as it is today?

Part of embracing yourself, loving yourself, and getting involved in an emotionally healthy relationship with someone who values you is about accepting your diagnosis and being involved with people who can accept it as well.

Low-risk sex means using a condom all the time, a practice everyone (straight, gay, bisexual or transgendered) should be engaging in while dating anyway. With self-confidence, safety, romance and honesty in mind, going out into the dating world may be just a little less daunting and a little more exciting.

Original Article via EmpowHER

Have an iOS device?, there’s a wealth of apps available for you as reported previously, another app of note and topical for this post is PositiveSingles by successfulmatch.com. PositiveSingles is the world’s largest, most active and most trusted iOS app for people living with HIV and other STI’s

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