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What advice would you now give your younger-self?

Alex_ScopeAlex_Scope Member Posts: 1 Listener

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

Replies

  • susan48susan48 Member Posts: 2,229 Disability Gamechanger
    The advice I would give my younger self is

    Dont take anything for granted 
  • Richard_ScopeRichard_Scope Posts: 2,723

    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 - Cerebral Palsy

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  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 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
    Community Partner
    Scope

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  • Government_needs_reformGovernment_needs_reform Member Posts: 858 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_AlumniPippa_Alumni Scope alumni Posts: 5,851 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! 
  • Ami2301Ami2301 Member Posts: 7,418 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_AlumniSam_Alumni Scope alumni Posts: 7,731 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
  • exdvrexdvr Member Posts: 313 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_AlumniLiam_Alumni Scope alumni Posts: 1,113 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
  • wsmsdwsmsd Member Posts: 2 Listener
    I would not be so self critical just because the illness is hidden.
  • selkieselkie 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.
  • debbiedo49debbiedo49 Member Posts: 2,906 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! 
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Peasmold_01Peasmold_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. 
  • TopkittenTopkitten Member Posts: 1,263 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.
  • sarahbichonloversarahbichonlover 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_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community @sarahbichonlover! If we can be of any assistance, do let us know.
  • Leanora1954Leanora1954 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_AlumniPippa_Alumni Scope alumni Posts: 5,851 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.
  • sarah50sarah50 Member Posts: 119 Pioneering
    My advice would tell me not to get ill under a Tory Government! Sorry feeling sarcastic
  • cmcicmci Member Posts: 36 Connected
    Live your life and do the things you want to - don't be dependent early
  • AndersonAnderson Member Posts: 2 Listener
    Hello everyone , I would party less and have gone to Art college despite my mother .
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Welcome to the community, @Anderson!
  • AndersonAnderson Member Posts: 2 Listener
  • AmyVWAmyVW Member Posts: 10 Connected
    My advice would be -
    •  Being 'normal' is underated 
    • You will have friends, you will make friends and those friendships will last
    • You will do well in education
    • you will find your place in the world
    • You will go to university and get a degree
    • You just need to patient and in time you will be able to make some amazing memories
    • You will explore the world, not just be stuck in your town
    • You will get a job 
    • Seeing the world in a different way is amazing 
    • You might be rubbish a playing sports or riding bike but you can speak in front of a large audience
    • You arent the only one who has dyspraxia
    • You will have the most amazing life - travelling to meet some very famous friends, meeting new friends, gaining a degree, Chair of an award wining  social enterprise and attend the Royal Wedding

    I mean some days I think how am I still going but I look back to how far I have came in 26 years and all the things i have achieved.

    Amy 
    *Its all about seeing the ABILITY within the disABILITY*
    *People who are different their time is coming* Tracy Turnblad - Hairspray 
  • Sue52Sue52 Member Posts: 78 Courageous
    Hello eveyone , not been on here for a while due to personal circumstances. 
    The advice I would give to my younger self ( I have sero negative arthritis, osteoporosis. 
    Do not knock yourself out in a job that pays good money but takes everything out of you.......... Take a role that you can easily cope with. Take things easy on yourself 
    xxx
  • DylanEvansDylanEvans Member Posts: 23 Courageous
    Prioritise. I spent a lot of time trying to maintain the status quo (walking, mostly) to the detriment of my quality of life. Also spent a lot of energy trying to do silly things like laundry independently when there was no need.

    For other people, walking or doing the laundry might be really important. I just try to think about what is actually important to me when my disabilities prevent me from doing it all, rather than maintaining a suboptimal status quo.
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