What it’s like living with an invisible condition

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.