I have spina bifida and became self employed as I was labelled unreliable — Scope | Disability forum
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I have spina bifida and became self employed as I was labelled unreliable

jeanlyn32 Member Posts: 3 Listener
edited March 2018 in Work and employment
I have spina bifida and hydrocephalus. I have long since given up trying to find a job as an 'employed' person due to the variability of my condition. Some days I am completely ' grounded' by pain or lack of sensation. Other days I am mostly ok, but need to rest every four hours or so due to poor sleep patterns caused by pain. I became self-employed about 20 years ago as I was labelled 'unreliable' due to poor timekeeping / attendance when I was most in pain. In this way I can manage my work without constantly having to take lots of (fairly unhelpful) drugs.


  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hi @jeanlyn32 and welcome to the community. It is very good to have you here and I am much impressed by your positive post. I'm sure I and many here would like to get to know you better, especially in terms of anything we might be able to do to make life better for you.
    You are among friends here.
    Warmest best wishes,

  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,793 Disability Gamechanger
    Hi @jeanlyn32, and welcome!

    Thanks for sharing this with us. I'm sorry to hear about your past issues finding employment, I'm sure many of our community members will be able to relate to the struggle of having variable condition. It's great to hear that you've found something that works for you! Take a look around the community and if we can be of any assistance, do let us know.
  • steve51
    steve51 Member Posts: 7,153 Disability Gamechanger
    Hi @jeanlyn32

    Welcome to our online community/family.

    It’s Great to meet you today.

    Yes I desperately have to “hang my boots up” in terms off paid work.

    I tried & tried so very hard for nearly 12mnts too return but with a mixture of “pain & mental probs “ I stood no chance!!!!!!

    By the way I do love your “attitude & determination” to life.

  • jeanlyn32
    jeanlyn32 Member Posts: 3 Listener
    Thank you Steve51!

  • deb74
    deb74 Member Posts: 782 Pioneering
    hijeanylin32. finally i have found someone who has the same disabilities as me! don't know about how physically disabled you are but i am not in a wheel chair and because of that people think there is nothing wrong with me. i find it really hard to explain to people what hydrocephalus is they see me being clumsy and forgetting things and finding things that other would find really easy are a stuggle for and they think i am stupid! i have walked out of several jobs because of it and am now looking at working for myself that way if i mess things up i won't have people moaning at me and that has happened plenty of times in the past. also i have arthritis which is getting worse all the time and working for myself will give me the freedom to take time off when i need to and work at my own pace.
  • jeanlyn32
    jeanlyn32 Member Posts: 3 Listener
    What a good idea. That should make life more enjoyable, though it might be very difficult financially and physically at the beginning, but it can be done!  What are you planning to do as a self-employed person deb74?

  • deb74
    deb74 Member Posts: 782 Pioneering
    hiya. i have always been interested in all sorts of arts and crafts. my mom used to be a textile teacher and a craft worker my dad also ran a craft shop so i have grown up around crafts. i also studied art and textiles at university and spend most of my time doing some craft or other so thought i would try and sell my crafts on the internet and also in local craft/gift shops. there are also lots of festivals and carnivals in the summer near where i live. as for the financial side of it my expences will be kept to a minimum due to not having to spend a lot on materials of have to pay to rent a shop.


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