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Why Did You Join The Community ?

Teddybear12
Teddybear12 Member Posts: 765 Pioneering
edited September 25 in Coffee lounge
Why Did you join the Community. To get advice and help with a benefit or help when you did not get what you expected. To  advise and help with a benefit. To make a friend who might have a similar condition as yourself. I joined as I had lost both my parents and my daughter all within a short time of each other. I thought other members might have had a similar experience although I would not wish it on my worst enemy. I also know quite a lot about IPAH and Transplants. Mostly having got used to how the community works I enjoy taking part and have made a few friends. Thank you.  

Comments

  • MissMarple
    MissMarple Member Posts: 106 Courageous
    It must have been a very difficult time for you to go through @Teddybear12 I hope that being part of this community will bring nice people to your life.
    I joined because I’m newly disabled and finding it difficult to adjust. 
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    @MissMarple Thank you. I am sorry you are finding it difficult to adjust to being newly disabled.
  • Sandy_123
    Sandy_123 Member Posts: 1,991 Pioneering
    I was googling something and ended up getting a link here so i landed  lol
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    You made me laugh, and that is what it is all about.
  • Sandy_123
    Sandy_123 Member Posts: 1,991 Pioneering
  • woodbine
    woodbine Community Co-Production Group Posts: 5,323 Disability Gamechanger
    Someone I knew on another forum suggested I came over and had a look and three years later I'm still here so it must be ok  <3
    I am a person with epilepsy not an epileptic, my illness doesn't define me.
  • Justcheckingin15
    Justcheckingin15 Member Posts: 188 Pioneering
    I arrived here..to look for some info ..for my Partner..and wish I had came across this forum BEFORE his application for PIP...as I find there is a lot of good advice on here..
  • ernie2009
    ernie2009 Member Posts: 148 Pioneering
    i joined to get help, advice and support which i got massively from some very nice people on here. thank-you all  :)
  • MarkM88
    MarkM88 Member Posts: 1,813 Pioneering
    Recommended to me by a Scope staff member when I was involved in a research project. 
  • lisathomas50
    lisathomas50 Posts: 4,597 Disability Gamechanger
    Made some good friends 
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    Very hard to find an active VI community (for obvious reasons). Same here unfortunately. Still amazes me that forum admins don’t do the very obvious and make all posts in such a forum a large font size. 

    Stayed because the benefits advice from other members was so obviously largely unregulated and awful. Remain amazed that a search function so full on awful persists.  
  • OverlyAnxious
    OverlyAnxious Member Posts: 1,649 Disability Gamechanger
    edited September 26
    I joined for the sarcasm and condescension...wasn't disappointed. :wink:

    Seriously though, I applied for PIP in 2019 but totally messed up my assessment, 0 points.  Couldn't understand how 0 points was even possible!  Tried CAB, Mind, etc but no help.  Tried the local disability advice service but they couldn't accommodate my disabilities! :D  I started searching online and found a couple of forums about the subject...the other one had to be paid for so I joined this one lol.  Got some decent advice on here (even if the tone was a little unexpected for a newbie, fortunately I'm not easily offended) which ultimately went on to win me an award at tribunal.  :)

    I stayed because of the members & staff tbh.  Some with similar issues, others with a wealth of knowledge on benefits or health conditions.  I don't have much to contribute really but am on here every day to read something.  What I find really interesting with forums is the range of members on here, most of our paths would never cross without the internet.  I just wish there were more 'local' things to meet people in similar circumstances.  I'm sure there must be others...but how do you find them?  I considered making an app called Mindr...like Grindr but to find nearby people with mental health issues...  Apparently that name has already been taken for something else though!
  • leeCal
    leeCal Member Posts: 4,246 Disability Gamechanger
    edited September 26
    I spend a lot of time alone so it helps to take my mind off myself and sometimes cheers me up. In other words I joined because I was bored and lonely.

    One thing i like about this forum is that by and large people aren’t just aggressive and argumentative for the sake of it, ie by default, if they were I wouldn’t stay here for long. Thankfully most people are polite even when tested which is good because we really don’t know what situations others are in or what pain they are experiencing when they post. We also have guidelines to protect us and moderators to enforce those rules and that seems to work okay as far as I can see. 

    @OverlyAnxious, you make a good point, there are few places where such a diverse crowd of people would meet in life apart from through the internet, and that’s a good thing overall. 
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    I joined for the sarcasm and condescension...wasn't disappointed. :wink:

    Sorry, I forgot. I obviously stayed for the ceaseless passive aggression. 
  • MissMarple
    MissMarple Member Posts: 106 Courageous
    I've come across lots of invaluable advice on this site. I am amazed by the commitment of some members of the community here. They dedicate what seems to be an awful lot of time to give prompt, useful, person-specific answers to queries, often explaining the same thing again and again to someone new. I have the impression that no matter what tricky question I post, one of these few people will answer within a few hours. They don't have 'Scope' in their username so I suppose they do all this in their spare time, without compensation. I'm very grateful.
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    Well spotted @MissMarple, although with that user name I’d expect no less :)

    Far too many on here are willing to passively aggressively stick the boot in but my goodness do they bleat when experienced members walk away because of that abuse. 
  • poppy123456
    poppy123456 Member Posts: 23,844 Disability Gamechanger
    I joined 4 years ago to help others, although at that time i didn't stay for very long. Obviously i came back and stayed for more than 2 years and continued to help and advise others, giving up a huge amount of my time in the process.
    Left a couple of times since then for various reasons. Came back not long ago after several months away and if it wasn't for @chiarieds i probably woudn't have returned.
    In that time i've made some lovely friends, gained even more knowledge than i had to start with, which the majority of that is from @mikehughescq. i know you don't like to be tagged and for theat i'm sorry but sometimes it can't be helped. Credit where it's due, i have an awful lot to thank you for and i for one very much appreciate you!
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    Like Sandy I stumbled upon Scope when trying to find an answer to a query I had (about going through my divorce). Unfortunately the Scope team didn't have an answer, but I had a look around while I waited for them looking into it. Someone had a query about one of my disorders (Chiari 1 Malformation), which I was able to answer, & I stayed.
    I've now been here 2 years as I've always wanted to help people, so do so where I can. I've learnt an awful lot too from Poppy & Mike, as well as some other members. I enjoy learning more as it keeps my brain active. :)
    I've been fortunate in making some great friends too, & am very pleased that my pleading/nagging helped Poppy to return, as she was a big miss.
    It's most unfortunate that a few members can't see when people are trying to help; don't really read a reply properly, nor links given, & become abusive. I've only experienced a little of this, but it's given me a glimpse of what Poppy & Mike have suffered. Thankfully it's a pleasure getting to know a lot of our members a little more, & I enjoy their company.
  • poppy123456
    poppy123456 Member Posts: 23,844 Disability Gamechanger
    chiarieds said:

    It's most unfortunate that a few members can't see when people are trying to help; don't really read a reply properly, nor links given, & become abusive. I've only experienced a little of this, but it's given me a glimpse of what Poppy & Mike have suffered. Thankfully it's a pleasure getting to know a lot of our members a little more, & I enjoy their company.

    Yes the abuse, i've had my fair share of that too in the past but that's another story. Thanks for the kind words too! <3
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    edited September 26
    Thank you to all that answered.
  • nannymaroon
    nannymaroon Member Posts: 238 Courageous
    Hi everyone. I joined to have some human contact after being home alone since March last year. I am very isolated and had a few negative experiences with online communities where there was bullying gossiping and manipulation.recently I was diagnosed with a serious health condition on top of my long term health problems and when I tried to discuss t in an online group I was told that God only makes people sick or disabled as a punishment for their sins and I "should repent for my lack of faith". It was a crushing rejection and a callous attitude so I left the group.
    Within 24 hrs a 'friend' in the group convinced me to stay.thats when the bullying started.
     Felt like I couldn't leave on my terms and was sucked back in as a punishment for leaving. So I deleted the app and thtelephone numbers of the other members. Now I'm back where I started last March, home alone, lonely and isolated. I am scared the same thing will happen again. But we keep trying don't we.
  • leeCal
    leeCal Member Posts: 4,246 Disability Gamechanger
    Hi @nannymaroon, sorry to hear of your troubles on another forum. I’m sure you’ll find this community far better 🙂 here’s to happier days!
  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    Hi @nannymaroon I hope you enjoy being part of the Community. What a dreadful experience you have been through. You showed great strength  by leaving the group. Well done.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    Hi again @nannymaroon - I'm sorry too about the dreadful experience you had on another forum......I hope we can redress the balance & you enjoy being a part of this forum. There's usually someone around to have a chat with, & I hope you enjoy our virtual 'Coffee lounge.'  :)
  • Tori_Scope
    Tori_Scope Posts: 6,030

    Scope community team

    I'm also really sorry to hear that you had that experience @nannymaroon. Have you felt able to report that group, or the members involved? I understand if you'd rather just try and move on from it, however.

    I hope that the community can be a good source of support for you. I can see that our friendly members have already said hello. As chiarieds has said, the coffee lounge is a great place to chat to other members more casually. You can see all of the categories of discussion we host here on the categories page

    Do you feel able to join any in-person groups, or groups that take place via video call at all? That can also be a good way of chatting to people with similar interests or experiences.
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  • 66Mustang
    66Mustang Community Co-Production Group Posts: 5,604 Disability Gamechanger
    I joined to ask for guidance with a failed PIP application which I “won” at the MR stage so I must have learnt something useful.

    I stayed because of the coffee lounge, and also the private messaging feature as I PM a few people. The main reason I’m still here is that I don’t see or talk to many people in real life, nor do I use social media sites like Facebook or Twitter. I think the forum’s a nice way to have conversations about random topics - I check the coffee lounge every day for new posts and enjoy reading what others have to say. I also enjoy making my own topics and getting peoples answers to my questions. :) 

    One thing I will say is that I have been on many forums and I can tell you that there is bickering on any forum. One of my favourite forums is a car and driving forum which is mostly inhabited by middle aged, middle class people - people with decent jobs and most likely a level of responsibility. The way these people act like children when they disagree on something I still struggle to comprehend after being on the forum for years.

    Someone else mentioned that the forum is a great way for people to cross paths who otherwise wouldn’t. I’d agree with this but unfortunately there is the other side to that coin which is that you will get people with vastly differing opinions crossing paths and that results in the arguments. In real life people tend to (but don’t always) “stick to their own kind” i.e. you wouldn’t get a conservative in a group of liberals, or an environmentalist at an American car show, but on the forums you get people of all different opinions coming together and this results in the arguments.

    Basically, what I’m saying is, don’t think that the bickering and arguing on here is anything out of the ordinary, because it isn’t. It’s an inevitability of having people from different walks of life interact with each other. :)
  • Justcheckingin15
    Justcheckingin15 Member Posts: 188 Pioneering
    Very well worded @66Mustang.👌
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    There is indeed something going off on most forums most of the time. What I find interesting here though is that it goes off if you have almost any opinion which differs from group think and there is considerably less discussion on here than any site I’ve ever been on. Doubtless some of that is s confidence thing but some of it seems to centre round an actual fear of discussion. Real discussion is not the same as an argument but there are people on here who cannot wait to frame any attempt to offer a different perspective or an attempt to discuss as an “argument”. 

    Whilst I have narrowed my forum use down to less than 10 I do think that fear of discussion stems in part from the nature of the group but also from the moderating which obsesses over tone and people being upset to the extent that in effect only one tone or form of expression is allowed and it’s a fairly banal one. It’s a huge pity because there are things we could and ought to be discussing and which are being discussed elsewhere by similar groups. Here there is no chance.
  • nannymaroon
    nannymaroon Member Posts: 238 Courageous
    Thanks for the warm welcome everyone.
    I think it's human nature to bicker but it's down to personal differences in how people manage their emotions as to the extent of the bickering and if it turns into bullying. The guilty party in the forum I escaped from had  anger issues that resulted in her being banned from her kids primary school for abusive and aggressive behavior. She blamed her behavior on her pregnancy hormones. She ran the forum like a fascist dictatorship. As if that wasn't bad enough, They were all anti vaxers. Which I didn't know when I joined.
    In retrospect I  had very, very little in common with them.
    At least here there's  a common interest and people who keep an eye on everything.
    I actually think that their beliefs about disability and God might be hate speech. I'm glad to be away from them.

    This forum has a very  relaxed, friendly atmosphere and a wide range of topics.
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,579 Disability Gamechanger
    I stand by what I said above,
    'It's most unfortunate that a few members can't see when people are trying to help; don't really read a reply properly, nor links given....'
    I don't see bickering or arguments as such, just sometimes complete denial even when facts are given. We can disagree amicably; that's not a problem, that's when discussion can occur, but, if people don't look into facts, then you're just seen as being opinionated/argumentative. Not helped, perhaps as mentioned above, by the Scope team telling us to respect another's opinion (even if they're wrong)! .......shouldn't wrongful assumptions, misreading as to what has actually been written, etc., be corrected? We're asked to ensure we give correct information, but, at the same time, if you do, you might be perceived as being in the 'wrong'.....
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    I am in other forums where solutions are simple and straightforward. One in particular. 

    If you post opinion as fact in a thread and then, despite a warning and an edit to remove, you are locked out of the thread. Simple and 100% effective. You soon learn. 

    If another member reports a post, the forum software immediately makes it invisible until a moderator steps in and investigates the legitimacy of the report. Users get one chance to fix the post within an hour and, if they don’t, it remains invisible. If a report is not upheld the post reappears and there is no action against the reporter. If a report is held to be malicious then the reporter is locked out of the thread. A second offence results in suspension for a month. A third and you’re gone. 

    If you abuse another poster or comment on the poster not the post you are instantly suspended for a month. Again, you soon learn.

    Repeat any of the above after a lock out or a suspension and you are gone. Simple as that. 

    Members do not debate any of the above. The discussions in said forum are long and detailed and fascinating and funny. It’s incredibly stimulating. By far the best forum I have ever been on. It simply takes a clear and simple moderation policy and consistent implementation. No pussyfooting about editing posts for tone. No warnings that don’t mention names. No endless trying to offend no-one. Just four simple rules and it is magnificent. 
  • cazza6565
    cazza6565 Member Posts: 83 Courageous
    I joined for advice, I have 0 friends , that's not a poor me btw it's just i am a very private person. The people on here amaze me with their time and knowledge for which I am grateful. Mikehughes your patience with some people astounds me.Even @janer1967 with her TV shows to look out for. Thanks to everyone , you have no idea how much your advice helps so many
  • janer1967
    janer1967 Member Posts: 12,312 Disability Gamechanger
    @cazza6565 your welcome 
    Here to help with my experience in hunan resources and employment rights 
  • mikehughescq
    mikehughescq Member Posts: 7,508 Disability Gamechanger
    @cazza6565 you think I'm patient :) 

  • Hollyblue
    Hollyblue Member Posts: 9 Connected
    I joined because I am lonely and it's been the toughest 18 months of my life - lost my job, my husband walked out on me, my dog died all in March last year when Covid hit. Fibromyalgia got worse as well as developing other health issues and depression and anxiety. My world has gotten smaller and smaller since being diagnosed with Fibro in 2018 but have suffered since 2012. I'm hoping that joining this group will help me build my confidence up again and make a few friends. Having worked with various disabilities over the years I never envisaged it happening to myself so it's been a struggle to accept. I don't want pity or platitudes but just to know that someone out there gets why I feel frustrated, angry, depressed,exhausted and the other tens of emotions that come with living with a disability. I do have days when I laugh too and used to have the greatest sense of humour so hoping to find that again. So hello everyone, nice to be here. 🙂
  • Ross_Scope
    Ross_Scope Posts: 4,989

    Scope community team

    Thanks for sharing @Hollyblue

    Sorry to hear of everything you've been through, and I can assure you that many members on the community will be able to relate to some of the feelings you have experienced as a disabled person. I hope you enjoy being here!
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  • Teddybear12
    Teddybear12 Member Posts: 765 Pioneering
    Hi @Hollyblue I hope you are OK , we have not heard from you this week. I notice you are interested in arts and crafts is this something you do as a hobby? Have a good weekend. Take care.
  • Daniel_2021
    Daniel_2021 Member Posts: 51 Courageous
    I'm here because i'm a new wheelchair user, as well as useful hints on how to control the mindless beast that is my wheelchair I am also angry and resentful of my body. Sometimes I just read some comments and take solice from it, sometimes I feel there's something I can add and other times I have a question/need advice.
    One thing that has surprised me when reading the comments is how many people feel lonely or use this forum as a main means of friendship, it's clearly highlighted the importance of such a tool and the positive impact it can have. I think you've asked a fantastic question and got some really eye opening responses.

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