“Of course it’s one thing not to want something. It’s another to be told you can’t have it.”- Robin Scherbatsky
Gonadal Dysgenesis is a rare genetic condition which hampers the development of the reproductive system. It is often characterised by underdeveloped ovaries, breasts and the complete absence of menstruation. But that’s not the only side effect of this disease. It also kills your confidence and makes you feel less like a girl! Don’t believe me? Well, listen to the story of J who hails from Mumbai and is suffering from XX Pure Gonadal Dysgenesis.
So I have this rare genetic condition called “XX Pure Gonadal Dysgenesis”. It means, I am a female as per my chromosomes but due to some godforsaken unknown reason, my body failed to develop ovaries. (The immediate known probable cause is attributed to the fact that my parents share a little bit of DNA.) Which also means, no hormones, no babies (I don’t like kids anyway). But to hear that at the age of 18 was devastating. It still is. During my darkest of days, it lurks around the corner saying “guess what, you’ve another problem,” reveals J in a Facebook post.
J has to take oral hormones regularly to maintain the necessary balance and ensure other bodily functions are not affected in any way. “I take oral hormones to induce menstruation. Without these pills, I WOULD BE IN A PERPETUAL STATE OF MENOPAUSE.”
But that’s not the only thing that the pills induce. Weight fluctuations (mostly gain, Dayum), alopecia, pimples, mood swings and being incredibly horny are just “some” of the side-effects of the treatment!
“Popping pills on a daily basis has become highly annoying. People make PMS jokes; my PMS is on steroids (quite literally),” she adds.
But J didn’t come to know of her conditions till she was in college and thus, lived without any medical help all those years!
“As a girl, my “blooming” signs were rather bleak. In short: No breast development, no periods. My mother was living in a state of denial. My distant relatives in the family were late bloomers too. After months of persistent pestering, a full body examination was done. Despite what was told (which wasn’t known to me), my mother decided to wait longer. ‘Faith’ is a dangerous thing. Fast forward two years: I needed answers. I was soon going to be in college and the thought of being so physically different was killing me. Even more, because I didn’t want the school bullying to resurface. It was then when I came to know,” writes J.
Though J had to deal with some really insensitive comments, she is not someone who can be defeated so easily. She tries to cope with her condition every day and upon researching found out that many countries have the practice of providing counselling to deal with a condition of this sort. She has now started seeking professional help.
“The most insensitive thing I’ve been told is “Think about those with life-threatening diseases, like cancer, you’re much better off”. It’s an unfair comparison and with all due respect, my problem is of grave concern to me. It has affected my confidence, esteem, acceptance of my physical body and ability to have or maintain relationships with the opposite sex,” she says.
But her disease has also made J stronger way more than she could imagine! “But one thing is for sure: in these five years, tears have turned into self-help through hope and kind words (and because Big Girls Don’t Cry). I’ve started being nicer to myself because that’s one thing I can do for sure. We could all do ourselves this favor. From not having ovaries being the problem, I am shifting to “I have one less problem without ya!” That’s progress, right?”
However, though J has learned to cope with her situation, there’s a question that she asked and it has haunted me since then. I’ll leave it to you to answer: “To accept and love your body is not limited to it’s physical manifestation. What about what’s on the inside?”
This story by J was posted on a Facebook page called individuality and is a part of a project called ‘Body of Stories’ #Bodyofstories. This project is a crowdsourced art project to explore and celebrate the many, varied ways of experiencing the human body.
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