Hi, My name is Meg and I am 21 years old.
When I was only three years old, I got a virus. I couldn’t walk or talk. My parents didn’t know what was wrong with me, I was sent to so many children’s hospitals, and they both spent so much time and money on doctors and specialists appointments. Eventually we got referred to a neurologist in Australia. We spent two days there.
When my parents got my diagnoses back, they were star struck. Because I had such a rare disorder, 1 in about 100,00 kids get.
Called Opsoclonus Myoclonus Syndrome.
Which basically affects your ability to speak, walk and function.
For 7 years, I spent 2 days of every month in the hospital.
When I was ten years old, I stopped treatment, because I thought I didn’t need it anymore, and I also wanted so badly, just to be like everyone else and be able to do things.
So my parents and my doctor both agreed to discharge me from the children’s ward at the hospital. But that definitely didn’t mean I was in any way better.
I was still very sick. I was also very behind in school, so when I did go back to school full time, I had to have a special one on one teacher aid, who took me out of the classroom. I also had therapy at school. My physical therapist came to school, and so did a child psychologist. Of course, I didn’t know this at the time, but I was being tested for anything other than Opsoclonus Myoclonus Syndrome.
My illness differently impacted on my schooling, because I had so much time out of school, I never really got the chance to catch up. I think if I didn’t read as much, or watch as many documentaries as I did,I would still be very behind. Maybe I would of never caught up.
But it also motivated me to try harder, study more and ask for help. School was always really difficult for me. Reading books was an escape, and learning to read was probably the most amazing thing I have ever done.
When I started high school, I was put in a class with kids who had learning disabilities. Half of them had some form of autism. One kid at ADHD. Another kid was selective mute. Throughout high school I went to the psychiatrist a lot. When I was only sixteen, I was diagnosed with high functioning Autism. At first I refused to believe it, because I thought that having autism was a bad thing, and I didn’t want another disorder. I thought people wouldn’t want to be my friend, so I never told anyone. Just this year I have become more open about it and as my friend calls it “found my aspie voice”. (Hope that’s not offensive to anyone!)
Growing up with a very invisible illness is really hard, and I know my parents found it hard as well, because they would often have me in a wheelchair and people would say things like “why is your child in a wheelchair, she has legs” or “why are you carrying her, she’s five”. I think parking in the disabled car parks were the hardest for my mum, because she would get out of the car, and I would get out of the car, and because I was always walking, people would give us really dirty looks.
Because I always looked “healthy” I was never assumed to be sick, so nobody would really take me seriously, unless my mum was there.
Being treated the same and spoke to the same as everyone else, was so difficult, because of my sensory disorder, I never really heard people (still don’t) and because I didn’t talk very much to strangers, eg; teachers, kids in my class, other parents, doctors etc. My mum thought I had a hearing problem when I was a toddler. And I often get told I speak too loudly, because I don’t hear myself. I was always looked down on, and my mum found this very difficult to deal with.
Because i think if I wasn’t diagnosed with OMS, people would of noticed my Autism, but because I was only diagnosed with OMS, they probably just thought my Autistic traits were part of my OMS, there for they never really bothered to run any more tests.
Three years ago when I was nineteen I was looking through my files from the hospital, and I found many more diagnoses from the hospital, obviously side effects, long term. Which were ADHD/Personality disorder/Atypical anorexia/Depression/sensory processing disorder and social and general anxiety. These were mental heath disorders which, I linked up to autism, and side by side, all the side effects were also autistic symptoms. Which made perfect sense, and gave me so much clarity.
If anyone who has just recently been diagnosed with an invisible illness or has one, I would give you the best advice I ever got. Never let anyone tell you what you have and what you don’t have. You are the only one who knows your body, your pain. You are the only one who knows your symptoms.
Yes, the doctors have been trained, but the doctors have never been through what you’re going through, so they cannot understand.
Also, if you think you might have autism (for example) don’t go to a doctor right away. Go to somebody who has autism! Because that person has felt autism. They know autism. They understand autism. A doctor is just somebody who has been trained. They only know what they have read online or in books. They have never felt it, they don’t understand what it’s like. Being sick you have a lot of time by yourself, which is a wonderful thing and a terrible thing. Learn to enjoy your own company.
I know that it’s hard because you don’t look sick, you look healthy. But please remember, that just because you can’t see it, doesn’t mean that it isn’t there.