Written by Sophie W
Find Sophie on Instagram here!
Find Sophie on Instagram here!
Arnold Chiari Malformation, Klippel Feil Syndrome, Thoracic Outlet Syndrome, Scoliosis, Congenital Heart & lung disease: Total Anomalous Pulmonary Venous Drainage, Atypical Paroxysmal Neuralgia (Epilepsy Type Seizures), Trigeminal Neuralgia, Facial Paralysis, Chronic Fatigue Syndrome. Deaf in right ear. I think mainly due to these as a symptom almost in a way, I have been diagnosed with Anxiety, Depression and Low Mood disorder. I have been under diagnosis for quite a while, they don’t know if it is rheumatoid arthritis or carpel tunnel. I am also under diagnosis for narcolepsy. These are all my chronic illnesses.
When I was a lot younger, the teachers were trying to persuade my parents to get me to go to a special school, however my parents won the argument as there is nothing mentally wrong or I did not have any learning difficulties. I had many physical difficulties but the primary and secondary school were told before hand and they were able to make reasonable adjustments. I had teaching assistants, especially one to one in my primary school as I was on an oxygen machine for my childhood and my teaching assistant was almost like a nurse too! Secondary school I also had a taxi which was arranged for through the school, I could take exams in another room and I could give them equipment for my hearing aids.
The only trouble I had at school (I am 25 now. I left after year 11 to go to college – nearly 10 years ago!) was that not all of the teachers read my statement, and I do look ‘normal’ so I would get questioned such as why I get a taxi, why I have a locker, why I am not doing PE. My parents actually came to the school because a woman PE teacher once said to me in front of everyone ‘If you are just going to sit there and not listen in your own world then you can do 5 leaps running around the field, I do not see why you cant when everyone else can”. NOW, if someone had said this too me as an older woman and all of the struggles physically and emotionally I have dealt with since school I would have had an answer but I was upset and I didn’t really know how to handle things at that age with the amount of different and complex conditions I had!
I think a lot needs doing to raise awareness of invisible disabilities and I believe all staff should have to read any of the children’s information who is under having a disability, along with a photo of that child!
There are way too many things I have heard or been said too since I was a child up until now which has offended, shocked or upset me but I think the main thing is a lot of people are not educated enough that not everyone who has a disability will look a certain way, or have an obvious deformity, or be in a wheelchair. BUT, if you are a friend to someone and they tell you and you are still ignorant enough to make a comment then you are not a true friend. A friend would research all of your conditions, how to help, how to support and ask questions. It is hard enough to grow up with extra difficulties and have strangers not understand let alone someone close! Also, if yo a person with no disability but you are tired because you have worked a full time job then that is understandable, people get tired, or you have an illness that will pass in a few weeks – please do not embarrass yourself by trying to compete or compare this to a disabled person. Not only would I LOVE to be able to work full time, I would also love nothing more to experience a healthy body if it meant I was just ill for a few weeks then I got better. It sounds selfish I get annoyed or cringe at people who try and belittle people with disabilities when they think they experience the same thing. They don’t. Even a person with disability, no two people can compare, there is always someone worse and there is always someone better. But if you know someone who is suffering, and maybe they cant work, or don’t do much socially, or are alone a lot, think twice, knock on and offer help or company or a chat – you may be the only person they talk too! Apart from doctor and other professionals from hospital appointments that week!