Nobody can tell I have a genetic defect just by looking at me. People
are not born with their number of chromosomes tattooed in their foreheads. Women
with Turner Syndrome do not need crutches, wheelchairs, or any other thing that
tells the world we have certain challenges. We go to the same schools other
kids go, take the same classes our peers take and are able to thrive. Many of
us even reach a height that doesn’t raise any eyebrows, or reveal that
something is “wrong” (whatever that means). And we are capable of functioning
in the adult world as any other person. Our obstacles don’t mean we can’t get as
far as others, even though they sometimes mean it takes us longer, or it’s less
easy.
The invisibility of our condition can be a blessing. We don’t have
to tell people about TS if we don’t feel like it. Even though nobody should be
ashamed of TS, keeping it secret can help avoiding discrimination. I myself
avoided talking about it till my early 30’s.
However, there is a downside of having an invisible condition.
I talked about my condition with the pastor that saved me from
being homeless in the UK when my second job here fell through. He pointed out
that, after I educated him about TS, he had a better understanding of my
struggles. He said that, maybe, telling people about it would make them more considerate
when certain shortcomings (no pun intended!) emerge.
I can’t believe it’d never occurred to me before.
Because I look and act in a way people consider “normal”, it’s incomprehensible,
even shocking, for some to understand why I sometimes I don’t actually do
things exactly like other people do. Why I didn’t graduate from the university
at the same age everyone else does? Why I was brutally bullied at school, and
had only one friend who was four years my junior? Why relationships with men
don’t come as easily and naturally as they do for every other woman? Why I
struggle at work to complete tasks as fast as all my colleagues? Why I had a
nervous meltdown when things at work weren’t going too well? Why sticking to a
routine is so important to me?
At this point I should clarify, that not all women with TS are
identical. Many ladies with my condition do everything as everyone else does. University
graduation, financial independence, promotions, marriage, kids (Either through
adoption or IVF babies), friendships, etc… Everything at the age people expect
them to. It all depends on HOW the syndrome affects the person, and on the
individual’s personal history. It’s not the same to grow up in a loving,
supporting home than in a hostile environment (like some women in the group say
they did). It’s not the same to spend your formative years surrounded by
friends, than to grow up being physiologically tortured by bullies. I can only
share my own experience.
One of my biggest struggles is suffering from high-functioning
depression and anxiety (which is not unusual among women with TS). Partly
because my brain came wired the wrong way (depression runs in my father’s side
of the family), and partly because of ten years bullying that was poorly
handled by the adults around me. Such mental illness is extremely misunderstood.
People assume you just don’t want to get better. But it’s not that easy to
control. It requires, for starters, the right amount of medication. And, yes, I
need to make an effort as well. I have to force myself to be positive, to look
at the glass half-full. What people don’t get is that, for me, having a
positive attitude is not as easy, or natural, as it is for others. My brain just
works differently. During my dark times, being positive feels like hard work.
Another common consequence of having Turner Syndrome is a neurological
condition called NVLD (
Non-verbal learning disorder). People with NVLD shine when
it comes to verbal skills, but have difficulties with everything else: maths,
spatial-awareness, motor and social
skills. The brain just
works in a different way and doesn’t process information as fast as
neuro-typical people. Those with this disorder don’t always comprehend
nonverbal cues such as facial expression or tone of voice. We tend to be extremely
literal and obsessed with routines, which is why NVLD is often confused with Asperger’s
syndrome. We tend to focus mainly in the details and miss “the bigger
picture”.
Just like TS, NVLD comes in different degrees. Mild cases are
often confused with “quirkiness” “laziness” and “clumsiness”, so they may go
undiagnosed. Kids with NVLD work at a different rhythm and require individual
attention, also have problems concentrating for long periods of time. The
teacher may constantly complain that the child “doesn’t pay attention”, “doesn’t
apply himself/herself” and “gets distracted easily”. The most severe cases may
require special education or home-schooling.
I went to a regular school and studied with kids of my same age. Academically,
I did pretty well. I was able to pass exams with the minimum effort. Just a
couple of hours of studying got me As or a B+. No study at all got me Cs or C+.
Except when it came to maths. I needed to apply myself to pass. Only once I
failed that class and physics, but it was mainly because I hatted those subjects
and didn’t even do the minimum effort required. The year I needed a private
tutor, she just made sure I sit down to actually do my homework and study. She
keep me focused.
At the university it was a different story. The university
required for me to sit down and study four or 5 hours on a row, every day. That
was a big challenge. Many times I was just two depressed to do so. When I studied,
I usually get very restless and bored if I had to do the same thing for long
periods of time. I had a lot of trouble concentrating, even with subjects I
really liked. I coped with it by writing what the textbook said in a notepad
using my own words, and re-writing the notes I had taken in class. The act of
writing the information helped me understand it and kept me focused on the
material, rather than get distracted thinking about other things.
It wasn’t easy. It doesn’t help that NVLD is often confused with
lack of intelligence. One time, I went to an assistant professor who managed
international student exchange programs, let’s call him Frank, and I told him
that I wanted to study in the US. Frank said I was not good enough for the USA,
that I would never get accepted, and that I should try studying in Peru or
Mexico instead. It was so discouraging, that the incident triggered yet another
period of depression and giving up. Eventually, I found out that I could have
done a masters in the USA if I made an effort, but it was too late.
In the course of 10 years, I dropped out, went back to the uni,
dropped out again, and went back for good. Eventually, I got my degree at the
age of 29.
After graduating, I was able to go for a two-week intensive writing
course in NYU, which was one of the best experiences in my life and one of my
happiest times ever.
Now I just work at a supermarket, so my job is very easy, too
easy. I often find myself bored and in need of mental stimulation. However, it
takes me a bit longer than others to complete a task. My biggest struggle is
speed. Partly because I focus too much on details other people don’t really
care about, partly because my brain doesn’t process information as fast. I’m
only talking about a few extra microseconds, but it’s enough for people to
mistake it with lack of brains. In reality, people with NVLD often have an IQ
higher than the average.
With a bit of support and understanding, there is nothing we can’t
archive. We CAN thrive in any profession (even if I personally haven’t succeeded
in my chosen field).
Hence the importance of creating awareness and spreading the word.
