In the past, I’ve spoken openly about living with chronic illness, but have only mentioned briefly about my visual impairment, today I’m going to talk about what it was like growing up with a visual impairment, my diagnosis and how it affects my life today.
Before I start, I would like to take a minute to talk about what Visual impairment means. Visual Impairment is a term used to describe any kind of vision loss. Bearing in mind that blindness is a spectrum and that not every blind person falls within the can’t see anything category. According to The World Health Organisation, there are an estimated 285 million people worldwide living with a visual impairment. With 39 million of them being blind.
Where it all began
My story starts when I was about six months old. My Nana who was visiting my parents, noticed that there was a potential problem with my sight. I’m not 100% sure what it was that raised her suspicion, but not too long after that doctors discovered that there was in fact something wrong with my eyes.
At the time I don’t think my parents were given an actual name for the condition. They were told that there is something wrong with the retina in my eyes. The retina is supposed to remain smooth, in my case however it is wrinkled and according to ophthalmologists, cannot be repaired. We now have a rough diagnosis, but more on that later.
As well as the issues with my retina I have a squint or strabismus. I was also diagnosed with astigmatism, which means my eyes are shaped more like rugby balls than footballs, light is focused differently for people with astigmatism than those without.
Because of this I began wearing glasses from a very young age. I think my mum might still have my first pair of glasses somewhere. My right eye has something like 20% vision and my left is more but not full vision
Growing up with a visual impairment
Growing up visually impaired had some challenges but to me it was my own version of normal. Yes, I struggled to read chalkboards, books and street signs. Walking into things is something I did a lot, lamp posts, lit cigarettes and even cups of coffee. But I never felt I was too different from any other kids my age.
I remember going to the hospital regularly as a kid, at the time I would scream and refuse to let them put a sticky patch over my left eye, at the time I guess I couldn’t tell them that I wasn’t able to see clearly from my right eye. It got so bad that my mum had to sit with her hand over my eye. Not sure why I found that easier than the patch.
At school, I faced the usual teasing for wearing glasses and for having to sit at the front of the classroom. It wasn’t however until I was in high school that began to notice that I was different from everyone else. Before high school, I was never given any help regarding my sight. At some point in my fourth year, it was decided that I needed help and someone with me in a language class to help me read what the teacher was writing on the board.
During my exams, I felt that my visual impairment made me stand out even more. As my classmates were being handed the regular size exam papers. I received A3 size papers that had larger writing. The exam papers were too big to fit on the desk. Most of it hung over the edge. I felt so embarrassed and judged.
Familial exudative vitreoretinopathy (FEVR)
It wasn’t until ten or so years ago that I was given a name for my eye condition Familial exudative vitreoretinopathy or FEVR. However, my diagnosis isn’t 100% confirmed and we only know this because of the case of glaucoma I went through. See below for more on that.
What is FEVR? It’s a hereditary condition that is normally found in premature babies. FEVR effects the retina causing progressive sight loss. (I can go into more depth if anyone wants me to). So the reason my diagnosis isn’t fully confirmed is that my sight loss wasn’t progressive, I was born this way. And as far as we know I am the only person to have this in my families history.
Over the years I’ve had a few surgeries. The first one I remember was when I was small. I can weirdly remember the bed I was in on the ward was like a massive cot and being taken to theatre surrounded by cuddly toys. That operation was in an attempt to fix my squint.
The other surgeries I had was for when I had acute angle-closure glaucoma. (Which I’ll be writing about in more detail in a separate post.) For that, I had laser treatment where they try to relieve the pressure of glaucoma by burning holes into your eyes. This wasn’t successful, it was decided that I would have trabeculectomy surgery. It was discovered that I had the beginning of cataracts in both eyes. Both lenses were replaced one during the main surgery and the other at a later date.
Although I tried my best not to let my visual impairment stop me working. Over the years there have been a few jobs that I’ve had to leave because of it. The first one when I was about 17. I was asked by my then employer to use a typewriter (that ages me) to fill in a form. I told them that because I couldn’t see the lines clearly to line up the spacing on the form that I couldn’t do it. I was told I had to, so I quit.
There have been another few jobs where I’ve struggled to carry out my tasks but instead of raising any issues, I would have pushed through. Most days I would end up with bad headaches due to me straining my eyes to do the jobs.
After my glaucoma and the onset of my chronic illness, I made the tough decision to stop working. It’s been tough, often feeling like I’m a waste of space and drain on society and my husband. Until I am reminded by him that I am raising our son and not receiving any form of employment benefit therefore not being a strain in society.
Being a parent with visual impairment was something I was concerned about from before I even considered starting a family. My biggest concern, was what if my child has the same condition I have? Not that it would stop me from having children, but I didn’t want a child to go through what I went through.
This worried me so much that before we began to try to start our family, we went to see a geneticist , who wasn’t able to rule out the possibility of the condition being passed on, but she reassured us that when we have a child they can be checked for eye conditions straight away. Which did happen and there is no sign of FEVR or retina damage in Alex’s eyes. He does have astigmatism and is long-sighted but that apparently is common.
Now that he is getting older, my concerns are more what if I can’t read his school work, or a glass is dropped, and he cuts himself as I am unable to see the bits of broken glass on the floor.
Will my sight get any worse, the older I get? I’m not sure. We were told told that it shouldn’t deteriorate but I guess nothing is certain.
Although I have experienced some challenges and continue to do so daily. My visual impairment feels normal to me. If my condition had progressed overtime rather than being born with it. I would probably feel completely different about it.
Have you had any experience with visual impairment whether it’s your own or through someone close to you? I would love to hear from you.