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Hello to all!

Hi all,

My name is Josh, I'm a 27 year old with hidden disabilities living in the midlands.

I have a genetic condition called Osteogenesis Imperfecti (better knows as a genetic version of brittle bone disease) which also unfortunately greatly affects my hearing, so I have a profound/severe hearing loss in both ears and use digital hearing aids. Eventually I'll lose my hearing totally, as it's a progressive condition.

It also affects my joints and bone density so I tend to have episodes of extreme pain from arthritis and previous nasty fractures I've had, and limited range of movement in some joints.


I'm currently in work, but off sick at present and I'm finding it more and more difficult to see a path to staying in employment.

I'm hoping to find advice and support from other people who manage hidden disabilities, as if you looked at me in the street you'd never know I have issues, and it's amazing how quickly even people who do know seem to forget!

I've never really had any support services (other than my medical appointments), mostly because my primary issue is my hearing and most hearing support is geared up for the elderly and retired in my area, not younger working age people. 

Hopefully I'll get more relevant support here :smile:

Thanks,
Josh

Replies

  • Ami2301Ami2301 Member Posts: 7,418 Disability Gamechanger
    Hi @HiddenHearing and welcome to the community! Have you spoke to your employer about reasonable adjustments?
    Disability Gamechanger - 2019
  • HiddenHearingHiddenHearing Member Posts: 2 Listener
    Hi @Ami2301 thank you very much, and I have indeed.

    I work in the finance dept of a large manufacturing company, and have been very open with them about my disability from the beginning. I've been employed for about 18 months there now. Initially the support was good, they purchased a hearing loop & streamer for me to use the telephone and in meetings.

    Sadly, during that time I feel a bit like disability needs have been pushed to the side for the sake of 'progress' towards a more modern corporate model of business.

    I used to work in a smaller office of 12 people, however they radically redesigned it and I'm now stuck in an extremely noisy 4500sq ft open plan office with upwards of 40 people, so can no longer use the phone or have confidence in knowing that I'm accurately understanding conversations with my colleagues. I also feel like my colleagues feel this way as well as I've noticed they now almost always ask others in my team to sort things rather than me as its seen as 'too much like hard work' to make sure I understand what is being asked of me.

    It's frustrating because they've made it a much more difficult place to work for me, but I think it's only happened through ignorance not malice.
  • Adrian_ScopeAdrian_Scope Testing team Posts: 7,923

    Scope community team

    edited November 2019
    Hi @HiddenHearing and welcome to the community. Sorry to hear you feel you're being a bit marginalised at work. Have you raised this concern with your manager?
    Senior Community Partner
    Scope

    Your feedback is really important to the development of the online community, so please remember to complete our online community annual survey
  • AilsAils Member Posts: 2,268 Disability Gamechanger
    Hi @HiddenHearing and welcome to the Community.  It is nice to meet you and thanks for sharing with us.  I'm really sorry to hear of your health struggles and what you are going through at work.  It must be extremely difficult for you.  We are here to support you should you need it so please ask if there is anything we can help you with.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • chiariedschiarieds Member Posts: 7,884 Disability Gamechanger
    @HiddenHearing Hi Josh, I've just noticed your post, & thought I'd write as I also have an inherited connective tissue disorder like yourself; mine's Ehlers-Danlos Syndrome, the commonest type! There are people here with a myriad of different conditions, & many with hidden disabilities, so please look around the forum as you will find both support, & understanding.

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