Would like to ask question about hidden disability

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carebearsgd
carebearsgd Online Community Member Posts: 1 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
I am currently a student who working on a design project about hidden disability. I would like to ask some questions about this kind of invisible diseases. Here are the questions :

1. How hidden disability affect you? (Social/ Daily basis/ Commute / any situation..)

2. Have you ever encounter any discrimination? How are you dealing with it?

3. Have you ever disclose your disability to people? What is their response? Negative or Positive?

4. What's on your mind when you attempt to disclose your disability to people?

5. What do you want the public to know about your disability? How can they help you?


Thank you so much for your help  D

Comments

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,761 Championing
    Thanks for sharing this @carebearsgd, hopefully you'll have some responses soon!
  • Eadiesmummy1
    Eadiesmummy1 Online Community Member Posts: 90 Contributor
    Hey @carebearsgd hope you are well. I have a few neurological conditions. Benign intracranial hypertension, trigeminal neuralgia, blepharitis, hemipilegic migraines and facial hypesthesia (they dont know what is causing it yet) I feel as though because i don't look like i should have a problem with my day to day life that i can hide it the best i can on a good day then no one will notice. I often catch buses and sit on the disabled seats and people look at me and tut. it has caused me to lose my temper a few times, because although i may not look to have a disabling condition, i do.  i struggle in social situations because trigeminal neuralgia causes horrendous shooting pains in your face and you cant help but yelp in a screetching cry. People look at me like im bonkers. Ive explained to lots of people about all of my conditions and began an awareness campaign for my area. It was a huge hit. If people have questions, i answer them, because it might help the next person in my shoes. My advice to the public, dont judge a nut by its shell, whats on the inside may not be as rosy as on the out. 
    Hope your design project goes well. keep us up to date. laura x 

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