What advice would you now give your younger-self? — Scope | Disability forum
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What advice would you now give your younger-self?

Hello! I am a researcher at Scope and we are trying to understand the needs and wants of disabled people as they grow up and move into adult services, education, work, relationships, financial changes and so on.

We are interested to know what you have learned and what advice you would give to your younger-self now?

If you are currently going through this time of your life, it would be great to hear what advice or information would help you?

Thank you very much for getting in touch ? Alex

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Comments

  • susan48
    susan48 Member Posts: 2,222 Disability Gamechanger
    The advice I would give my younger self is

    Dont take anything for granted 
  • Richard_Scope
    Richard_Scope Posts: 3,115

    Scope community team

    edited September 2018
    Don't do things just to 'fit in'. Never, ever work for family and be less critical of yourself.
    Scope
    Specialist Information Officer and Cerebral Palsy Programme Lead

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  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @Alex_Scope and welcome to the community! I write a blog and here is a letter to my newly diagnosed self that I wrote last year :)

    https://cpstudentblog.blogspot.com/2017/08/a-letter-to-my-newly-diagnosed-self.html
    Scope

  • Government_needs_reform
    Government_needs_reform Member Posts: 859 Pioneering
    @Alex_Scope Mine is, I wish I foreseen the future and still had all the My money and business I earned and saved years ago before trusting people who then rip me off and stole from me, and now fully disabled and trying to survive and being controlled by this Government and the DWP for a few pence to survive. 

    I want a life of being free from all this constant grief our dear Government inflict on us whe they full know well I'm never going to get better or fit for nothing again and stop these stupid reassessments.

    I will never let people in my life ever again. And I will only help them at arms length only now.
    ⬇️
    I created one of the campaign election videos for Labour, and Jeremy Corbyn,
    This is a new version of Emeli Sande, Hope "You Are Not Alone
    I highlighted everything that's wrong with this country from benefits, NHS, UC etc, but now we have to put up with the hate now that is the Tories. 

    You can see the video here.
    https://m.youtube.com/watch?v=P5o8hRHh9IY


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Alex_Scope, and welcome!

    Stereotypical as it might sound, my advice would be not to worry about how other people are going about things- there's no 'right' way to live your life (especially with a chronic illness), and there's nobody's path to follow but your own! 
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Don't wait until the last minute because it could be too late
    Live in the moment, time can be precious and you shouldn't waste it
    Money can come and go, spend it wisely because once it's gone, it's gone
    When you're in a time of need, your true friends will stand by you and support you, don't bother wasting time on people who have no intention of being there for you, being a friend.
    Disability Gamechanger - 2019
  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    I would tell myself to trust my own judgment, do my own research and to speak out sooner than I did because the isolation and fear lessened as soon as I realised I wasnt alone in this :)
    Scope
    Senior online community officer
  • exdvr
    exdvr Member Posts: 331 Pioneering
    I thought that as long as I worked all the hours God gave me to provide money for my wife and young family then that would be all that was required.  Trouble was that my kids only ever saw me asleep after a hard shift and grew up without knowing me.  This was thrown into my face during a "discussion" years later when they were grown up and at the same time my marriage was disintegrating.  We're now no more than 2 strangers sharing the house and we're too old to see any way out of the situation.  I don't have any answers, only regrets.  Don't be like me.

    Best wishes.

    DLTBGYD

  • Liam_Alumni
    Liam_Alumni Scope alumni Posts: 1,105 Pioneering
    Hi @Alex_Scope! My advice to my younger self would be to be proactive. There were moments I felt quite isolated and uncertain about support I could receive, but as soon as I got out there and met people, asked for support etc. I became so much more confident!
    Liam
  • wsmsd
    wsmsd Member Posts: 2 Listener
    I would not be so self critical just because the illness is hidden.
  • selkie
    selkie Member Posts: 9 Listener
    Hi Alex, i wish i had given myself permission to completely rest instead of constantly pushing myself. Together with the rest i wish my disability benefits with the dwp had taken my gp's word and therefore i wouldn't have had to go through the extremely stressful process time after time causing repeated relapses which i never regain the functioning i lose each time. I often wonder how many of us would have had a chance to recover if we had been able to rest and if the disability payments could have been available immediately.
  • debbiedo49
    debbiedo49 Member Posts: 2,904 Disability Gamechanger
    There's only one of you, so don't compare yourself to others, you are unique! Also don't internalise pain or suffering as it may come back to bite you later in life! 
  • Peasmold_01
    Peasmold_01 Member Posts: 144 Pioneering
    My advice, never look back. What is done is done. It cannot be undone. For some every day is a battle with pain and the system. Don't try for 'a strike' knock one skittle down at a time, eventually the remaining skittles will fall. Don't get angry, get even. Use the knowledge you have or can obtain to seek advice from those that know how to work the system. If enough of us, and I mean those of us who have varying illness and disabilities band together we can influence the out of touch politicians who live in their respective ivory towers. Let's tell them, buck your ideas up or we will vote you out of power, or not Into power. Research, research ,there is a plethora of information out there on the web. Ask for help, push for help, keep your temper, but keep your self respect. Above all, as hard as it may appear, keep believing in yourself. You are the most important person in your life. 
  • Topkitten
    Topkitten Member Posts: 1,285 Pioneering
    No advice at all. I like the person I have become (chronic conditions included) and anything that might change that is to be avoided.

    TK
    "I'm on the wrong side of heaven and the righteous side of hell" - from Wrong side of heaven by Five Finger Death Punch.
  • sarahbichonlover
    sarahbichonlover Member Posts: 1 Listener
    Don't work so hard and realise you have to pay for pretty much everything yourself if you become disabled!
    Value your health..
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Welcome to the community @sarahbichonlover! If we can be of any assistance, do let us know.
  • Leanora1954
    Leanora1954 Member Posts: 6 Connected
    Thank you I am not having a good day being disabled with chronic pain and was diagnosed with cancer has been overwhelming . After having to go to hospital yesterday I’m suffering so need to rest and let medication work to day but many thanks 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Oh I'm so sorry to hear that @Leanora1954, I hope you get some rest and the remainder of the day is as kind as possible to you.
  • sarah50
    sarah50 Member Posts: 119 Pioneering
    My advice would tell me not to get ill under a Tory Government! Sorry feeling sarcastic
  • cmci
    cmci Member Posts: 36 Connected
    Live your life and do the things you want to - don't be dependent early

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