For years he didn’t know what was wrong with him – all he knew was that he wasn’t what was considered “normal”.
Normal kids don’t have to take off their clothes and expose their private parts to a doctor – and then be told he’s “still abnormal” compared to other boys and girls.
Normal kids don’t have a medical check-up every six months followed by yet another set of treatments that are both humiliating and painful.
But Anick Soni, from Leicester in Britain, believed he had no choice but to go along with what his parents and doctors decided was right.
And by the time he was in his teens he was so isolated and miserable he tried to commit suicide. However, Anick’s story has a happy ending: he’s finally living life as a man with a normal-looking, functioning penis – something he never thought he’d have.
Now aged 23, Anick tells his story in the BBC documentary The Intersex Diaries, a fascinating and eye-opening window into the world of people born with both male and female genitalia.
A boy or a girl?
When Anick was born doctors couldn’t tell his Hindu-British parents whether their baby was a boy or a girl.
“The child is mostly like a boy,” one said, “but we aren’t sure yet.”
“I didn’t look like other boys or other girls,” Anick says in the film. “Specifically, my genitals didn’t look like either.”
DNA tests showed the presence of XY chromosomes, meaning Anick was technically male, but his genitals were all mixed up – his testicles were in the wrong place, his penis was below standard size and the opening of his urethra wasn’t at the end of his penis but on the shaft.
“I guess it looked like a vagina as well,” he says.
Several surgical procedures
Anick was just four months old when he had his first surgery – to move his testicles – and years of hormone treatment and operations on his genitals had followed.
He stopped counting how many times doctors and nurses had seen him naked. “In the past few years it’s been about 100,” he says.
Each time he was told things weren’t quite right yet – and it didn’t help that his conservative family kept his condition a secret for fear of being shamed.
Desperate to end the torture, Anick tried to kill himself – once by attempting to suffocate himself, another time by trying to drink bleach.
The tamper-proof cap thwarted his efforts.
None of the doctors Anick saw could tell him he was intersex – one of 1.7% of people worldwide born with the condition.
He was just different
When he discovered the term at the age of 18 after doing his own research, he finally understood there was nothing wrong with him.
He wasn’t suffering from an embarrassing condition or a sinister illness. He was just different.
“Suddenly I realised I didn’t have to be ashamed of who I was and how I was born.”
It was around this time that doctors presented him with the option of building him a new penis from skin grafted from his arm, and a pump which would help him get an erection.
This procedure is sometimes used for transgender men who want male genitalia.
However, Anick put off the decision as he needed to be sure it was what he really wanted.
After much soul-searching at age 20, while studying law at the University of Westminster, he finally decided to get the series of operations.
The three major surgeries, while not without complications, were successfully completed in August last year.
Though he now has a large scar on his forearm, Anick has a working penis.
“You’ve heard of the phrase, ‘I wear my heart on my sleeve?’” he says. “Well, I kind of wear my penis on mine.”
The fact his parents raised him as a boy was “just lucky”, Anick says.
Babies born with tiny penises or an organ that resembles a vagina can just as easily be assigned female, according to a Buzzfeed News report on intersex people.
Pause on hasty decision-making
Anick quotes a line in a medical book he once read to explain this: “It’s easier to dig a hole than it is to make a pole.”
It’s still common practice to give intersex children unnecessary and potentially damaging surgical treatment, the United Nations Free & Equal campaign that raises awareness of sexual, gender and body diversity, has found.
Many parents, like Anick’s, don’t realise it’s better to wait until their children are old enough to make the decision themselves.
Anick believes most of the operations he had growing up had been pointless and “purely cosmetic”.
When he first realised he was intersex, he recalls being angry at his parents for not doing more to find out about his condition.
“But I didn’t realise how in the dark and overwhelmed they were,” he says. “My parents weren’t supported enough and only ever did what they thought was right.”
Being open and honest
When Anick was finally ready to have the penis reconstructive surgery, he made an important decision: to open up about his choice – and his big secret.
“I kind of had an epiphany,” he says. “I knew I needed to start telling people. I needed to tell the truth.” He told his extended family first, as they were sure to ask questions about why he was constantly in and out of hospital.
“And how many times can you have your appendix out?” he jokes.
Their reactions surprised him. “I didn’t know people could be so accepting of something I’d been hiding for so long.”
It would be three years before Anick’s surgeries were completed and they all came with risks and challenges.
In 2017 the skin of his forearm was removed to create a new phallus and it was a year before he was able to urinate through his new penis. He had to wear a catheter for months.
During his last big operation, a prosthetic was implanted into his penis. By pumping it up with an external device that attaches via a band, he’s able to get an erection which will allow him to have penetrative sex.
The operation didn’t go without a hitch. The device became entangled in his testes – causing excruciating pain – but it was corrected in August.
“I kind of feel like a cyborg,” he says about his new penis. “But at least I won’t have performance or anxiety issues.”
These days Anick is an activist, working to change people’s misconceptions about intersex people.
He’s also managed to secure a full-time job at a university as he’ll no longer be in and out of hospital.
Anick has yet to embark on a romantic relationship but is finally going on dates with both men and women. He joined a dating app but says his first connection with a woman wasn’t a positive one. “I went out with a girl who told me I wasn’t really a guy.”
He then went out with a man. “But I just didn’t feel anything. So, I’m having the normal problems that people do with dating and relationships – that’s a nice feeling.”
Image credit: Drum