'Things aren't always as they seem': Life with a disorder that prevents you from walking

On bad days, a neurological disorder means Finetta cannot walk - even though there is no physical, medical reason that prevents her from using her legs. Here, she writes about her experience of what can be a stigmatising condition.

Finetta

On bad days, a neurological disorder sees Finetta struggle to walk. Source: Insight / Zen Pang

Can you imagine waking up some mornings ready to jump out of bed and start the day, and not be able to feel your legs? Or getting off the seat on the train and your leg goes completely numb? Or in class and getting out of your seat, realising you can't because you can no longer walk? I fell out of my chair at school and was so embarrassed, I had to be lifted into a wheel chair out of class that day.

This has been my life for the past three years. I have (). I am 14 years-old and I have an illness which many people don't understand. This can be really hard at times. I am in year 8 and am lucky to have met some amazing people.

I live with this disorder and it can be the biggest pain in the world some days. I usually tell people who ask that I have a leg disorder and don't label it, as I find that people just don't understand. My friends actually cope better with it than most adults. At high school, not one person has picked on me and I am grateful. Primary school was a different story, as people I called my friends would call me a fake and actually kicked me in my numb leg questioning if I could feel it. That was really hard because I was just diagnosed and not coping well at all. I spent most of grade 6 on crutches and in a wheel chair.
I was so scared as even the doctors didn't know why this was happening to me.
In the beginning it was just normal day. I was at cafe with my mum and felt my right leg going numb. My mum said it was probably just pins and needles. But it didn't go; it got worse and started getting higher and higher up my right leg. By night, my whole leg felt paralysed and my hip was in a lot of pain. Waking up the next morning it was still the same and my parents decided it was time for a visit to our doctor. The doctor sent me straight to the hospital where I was admitted. That's where the tests began. I was checked for a reaction, a spider bite, nerve damage and had x-rays, scans, blood tests. They all came back clear and after a three night stay, they sent me home and basically told me they had hoped it would fix itself. I was admitted to the out patients clinic where I went back every Friday, still unable to walk. This went on for  three months. I was feeling so down at this stage, thinking would I ever feel my leg again. I was so scared as even the doctors didn't know why this was happening to me.

Then one day I woke up to both my legs paralysed and the pain in my hips was so bad that I was screaming. Mum and Dad rushed me to the Royal Children's Hospital where Dad carried me into Emergency. I was admitted, and my life changed.
After 4 night stay, I was diagnosed with this disorder they call Conversion. Conversion can affect people in different ways but for me it is my legs. Usually only my right leg but on bad days, both. Now I had a treatment plan but I still didn't feel better because I didn't understand why this was happening. I am told there is nothing physically wrong with me but I feel the numbness and the pain is very real. I hated that it was out of my control.

I spent the next six months at the Children Hospital three times a week doing rehabilitation, learning how to walk again and not giving in. I learnt ways teach my brain everything is okay.  What I understand that happens is that instead of dealing with an issue, my brain instead blocks it and chooses to distract me from it and sends the wrong message. If I'm feeling anxious it can lead to an episode. I have to not give in and tell myself that all is okay and distract myself and fight hard.
I don't want pity but for people to not judge and accept that things aren't always as they seem.
I now only have to go to the hospital every fortnight and have improved. Dr Andrew Court, at the Royal Children's Hospital, has helped me heaps with helping me with anxiety and dealing with issues. I still have 1-2 relapses a week but they only last about two hours and sometimes can be even shorter. It is a constant battle and I hate it but I will not let it take over my life. I have come a long way with the support from my family, friends and awesome doctors. I love spending time listening to music, playing footy, playing with my dog Beau, doing make-up, being with friends and family and anything to do with fashion. This disorder is very real and I don't want pity but for people to not judge and accept that things aren't always as they seem. 

 

| Catch up online now:

[videocard video="754554435974"]

Finetta's treating doctor, Dr Andrew Court, will appear on the program. 

 


Share
Insight is Australia's leading forum for debate and powerful first-person stories offering a unique perspective on the way we live. Read more about Insight
Have a story or comment? Contact Us

Insight is Australia's leading forum for debate and powerful first-person stories offering a unique perspective on the way we live.
Watch nowOn Demand
Follow Insight
5 min read
Published 13 September 2016 11:31am
Updated 2 December 2016 11:19am
By Finetta


Share this with family and friends