Shining The Spotlight on Chronic Illness & Disability Q&A With Amanda
January 6, 2019
Hello and welcome to another instalment of Shining The Spotlight. A series where I give others with chronic illness and disabilities the platform to talk about their illness or disability to help raise the awareness of their condition or disability.
Introduce yourself and tell us a bit about you?
Hi, my name is Amanda Gene. I’m 30 years old, and I have a disability and mental illness blog.
Chronic illness(es)/disabilities I have?
I have a visual impairment called Nystagmus, which is where my eyes move continuously. I have night blindness. I also have Cerebral Palsy and Dyslexia.
My symptoms/condition began?
I was born 12 weeks early at 28 weeks gestation and I weighed 1 pound 5 ounces and was 12 inches long.
My diagnosis process was?
I started getting help with my Cerebral Palsy when I was little. I was diagnosed with Dyslexia when I was in second grade and I was registered as a student with a visual impairment when I was in fifth grade.
The hardest part of living with my illness/disabilities?
The hardest part for me was learning to have peace with my disabilities. Now I know I can do a lot more then what I thought I could.
People assume that?
That my conditions can be cured with surgery. That I move my eyes on purpose to get attention.
A typical day for me involves?
A typical day involves me living on unemployment island and trying to get onto freelancer island.
The one thing I cannot live without is?
I cannot live without my computer with my screen reader or print to text reader.
Being ill/disabled has taught me?
How to work harder.
What advice would I give someone recently diagnosed?
Don’t give up and ask for help when you need it.
My support system is?
My grandpa, my caseworkers, friends and the disability community. \
If I had one day symptom/disability free I would?
I would love to be able to drive a car.
One positive of having a chronic illness/disability is?
To stay positive and to be thankful for what I can see. That the doctors and medical community are trying to find better treatment and a cure.
The spoonie/disability community has been?
Amazing! They are a great support network for people.
Thank you to Amanda for sharing your story. Please check out her social links and give her a follow to learn more about her and her condition.
If you’ve missed any of the previous posts you can find them here. Also if you would like to share your own story of chronic illness or disability you can email me firstname.lastname@example.org, I will be happy to send you the questions and answer any queries you may have.