Advice For The Newly Disabled

Advice For The Newly Disabled

My Rockin Disabled Life

Hi friends, my name is Sarah and I live with a disability called Spina Bifida and have more physical challenges than most people. The media has wrongly portrayed the disabled community for as long as I can remember and makes us all seem inspirational or depressed. I am on a mission to break all the stigma surrounding disability to help you learn the truth.

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  1. Invisibly Me

    These are some fantastic pieces of advice for anyone new to the world of any kind of disability, chronic illness etc. Where you’ve mentioned finding your tribe, I’ve personally found the online realm to be fantastic in this respect. The chronic illness/disability community is priceless. Learning to rest or pace still frustrates the hell out of me. I still struggle with guilt and it gets in the way every single time. Considering there was no help or support of any kind when I first had health issues age 19, let alone when my health truly went down the toilet age 26, I think posts like this should be made available to all the newly disabled and diagnosed to give them a little guidance and hope. Fab post!

    Caz xx

    1. My Rockin Disabled Life

      Thank you and I agree that the online community is great support for the disability and chronic illness community. I often find it difficult to get the same kind of support I get online in real life. Guilt is something I often struggle with which bugs me because I know I shouldn’t feel this way. Learning to rest is something I am not good at because before chronic pain I was very active but I am trying to learn to slow down!

  2. Toni

    Wow what brilliantly written advise. Your so right that able bodied people try to understand but can never truly get it. I was a carer for disabled children and then adults I truly thought I understood, It was a shock the way other people reacted and made me very cross. I would love sharing all the positives with people about my job and the joy helping someone enable themselves to do things able people can do on a whim without forward planning.

    So when I discovered I had a degenerative spinal condition in my late 30’s I thought I understood. I really didn’t. I think that made it even harder. Five years in I lost my husband of 30 years who couldn’t handle me being disabled let alone using a power chair. He also got custody of my kids because I had a breakdown over it all. I didn’t want to be here and was suicidal and needed constant care for a long time.
    I’ve had amazingly kind and amazingly hideous behaviour towards me because of my disability.
    I have a lovely able bodied partner now I’ve been with for two years. Nothing phases him and he is truly amazing. I didn’t see myself ever having another relationship. So I feel very lucky about that.

    I wish I’d had this to read when it all started though it would have helped so so much. Thank you 😊

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