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Let's talk about loneliness

Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,723 Scope community team
edited June 2019 in Disabled people

Marmalade Trust’s campaign to raise awareness of loneliness kicks off this week and the theme is ‘Let’s Talk Loneliness’.

They’re asking people to speak out, admit to having felt lonely and help reduce the stigma by having a conversation about loneliness.

We’re going to be discussing loneliness on the community this week and doing our bit to help our members feel a part of our community.

Today we’ve launched our new light-hearted game ‘Ask the next member a question’ in the Coffee Lounge and we’d love for you to get involved and for the people on our community to get to know each other better.

While loneliness in the elderly is often rightly a concern, a recent study found that 10% of people between the ages of 16 and 24 admitted to being ‘always or often’ lonely, more than three times the amount of those over the age of 65 who responded.

People are often embarrassed to talk about being lonely, but will you take the pledge and join the #LetsTalkLoneliness movement? You can read more about it here.

Have you ever felt lonely and were you embarrassed to admit this to anyone?

Senior Community Partner
Scope

If you have a few minutes to spare, we'd appreciate your feedback on our online community.

Replies

  • dolfrogdolfrog Member Posts: 434 Pioneering
    I feel very lonely outside of my immediate family, my wife and 3 sons.
    I am almost house bound avoiding the ignorance and disability discrimination from others who do not want to understand my communication disability Auditory Processing Disorder.
    Auditory Processing Disorder is a listening disability, the brain not being able to effectively process sound base communication, especially speech. And the Temporal type of Auditory Processing Disorder is about having problems processing  the gaps between sounds, which can include the gaps between words in rapid speech (when for us others talk too fast) and it is  also the main underlying cognitive cause of the developmental dyslexia symptom (what the dyslexia industry call a phonological processing deficit). And the speech and language profession describe Auditory Processing Disorders as Specific Language Impairment (SLI) which they are now marketing as Developmental Language Disorder (DLD).
    So part of tthe cause of my loneliness is the incompetence of the so called medical professions that only want ot hide their ignorance and incompetence while maintining their current income sources and massaging their egos. They are the main cuase of my loneliness by failing to undesrant and explain these issues while trying to hide their ignorance. 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @Adrian_Scope   Thank you for saying and sharing.

    As one who uses this forum every day feel the need to share and care. What is important to me is not to think about it.

    Loneliness is a crowded room full of hope and heart. Those dreams turn to snow.  One line from a song I know.

    Understanding how it is effecting me mentally is troubling. I do know trying to admit and trying to cope with the issues of isolation is never ever easy.

    As I age older never realised that I would be like this ever. We all of us expect to be in social situations. Meet people who be their friends in work or other places.

    Aspects of ones life is people change and move on. Not many wishes to dwell on the memories but there are clear and sometimes clouded.

    Outside forces causing hurt and harm no one wishes to be lonely but I have stories and encounters of  people whom I have met 

    Had this in male  support groups especially ones where numbers are not many.

    Speaking and talking may help but some men of a certain age disregard and will not confront their emotions.  Some whom I have met are suicidal, teetering on the edge pleading for some one to talk to.

    I am here ready to listen.  Have the time, patience and tolerance. Many do not.

    While others are away doing activities.. Takes a while to utter the words need some one to talk to .  

    After a short time some may speak a few words but struggle with any thing else.

    This is something that is going on . In most of the male support groups.  I have encountered and joined then left because of problems with those who do understand me.

    What is sad today is this a representation of our society.?  We just do not talk or meet any more in social situations.

    Social media has taken control also I do think a lot of issues and problems with benefits have caused a lot of difficulties.

    Social mobility is not happening.  

    As I am aware the situation with my self. 

    The only support I have is this now the only connection to stop me from being lonely.

    Take care.

    @thespiceman  




     


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  • newbornnewborn Member Posts: 621 Pioneering
    It troubles me that two situations are conflated.  A person who is physically imprisoned in isolation does not F E E L lonely,  he I S lonely.  A person totally isolated with no visitors at home or in hospital or a 'care home' is not the same as a hormonal complaining snowflake teenager surrounded by friends activities and devoted family.
  • dolfrogdolfrog Member Posts: 434 Pioneering
    Hi @newborn
    These issues have been lifelong from being a teenage not being understood, by parents, teachers, etc, to being an adult being ignored and discriminated against by peers, employers, and local medical professionals. 
    This can be about the failure of most to understand the complexity of neurodiversity and providing the support and understanding we may need as children, teenagers, and adults. Our issues remain, and the ignorance of others continues and we become isolated and lonely to avoid the discrimination and victimisation from others. 
  • newbornnewborn Member Posts: 621 Pioneering
    That makes sense, Dolfrog. I thought these days people would  know, as they  wouldn't  a few decades  ago, if you are autistic  or have  a similar  condition?
  • nikkifnikkif Member Posts: 47 Courageous
    The loneliness I feel on a daily basis is crippling. I used to work in pubs and bars before I fell ill and had always been a social person surrounded by lots of people different ages, races lifestyles but my illness and unpredictability offer has left me terrified to leave the house. I have my family around me but my friends all seemed to have disappeared over time and I cant blame them. Everyone has their own lives to lead and bills to pay and can get sick and tired of being around an ill person who doesn't have much to say for themselves anymore. I feel so alone and dont even know how to socialise anymore I've lost the  ability and want. Being a sick person sucks. 
  • dolfrogdolfrog Member Posts: 434 Pioneering
    @newborn
    International research has been investigating the various issues that can combine to become the possible multiple issues that can combine to cause autism. The main causes of Autism are a brain development failure at the age of 2 to 3 years of age. 
    There are various motor, processing, and attention disabilities which can be genetic, or acquired at any age, and these single issue disabilities can be co morbid with other single issues disabilities, which can be part of the combination of issues that can be part of autism. All very complex, and even difficult for our so called medical professionals to define and describe.

    I have Auditory Processing Disorder (APD), a listening disability and the underlying cause of my dyslexia. Some who have Auditory Processing Disorders can be mis diagnosed as having ADHD, and or Autism. We first found out about APD when our son was being assessed for autism back in the 1990s. He is not autistic but he was one of the first children in the UK to be identified as having what was then called Central Auditory Processing Disorder. When I was doing the online research to find out what APD was I soon discovered that I had been living with it all of my life. I was the first adult in the UK to be diagnosed as having APD back in 2003 as part of helping the Medical Research council run a 5 year APD research program 2004-2009. 

    The problem is that UK audiologists , speech and language, and psychologists do not ewant to be trained regarding Auditory Processing Disorder as they would have to work as part of a team, and change much of the terminology they use to desribe our issues. Which is why I feel so alone and lonely. Being failed by these so called medical professionals, our family are not getting the support and understanding they need. 

  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I became very isolated when I developed agoraphobia on top of some mental and physical disabilities. I stopped working. I had p t s d. I lost 2 years of my life in a fog. I trusted two people and pushed the rest away. When I did eventually get the correct help, almost everyone was gone. People do not always understand the complexities of m h recovery and the part about just waiting till the person feels ready to start interacting again. This has led me to,loneliness. I've been doing well with my recovery. I have tried being in small supported groups of people to aid my recovery but they ran the course. I can't cope with large groups and unfamiliar stuff. I'm sure there are lots of folks like me who are struggling with putting the pieces of the jigsaw together to live a full and happy life. Unfortunately where I live the resources are just not there. I don't know what the answer is. I know I will have to keep pushing myself to try new things and be around more people but it is terrifying. I feel like I would be a burden to anyone and why would they want my friendship with my lifestyle? I guess I just don't know any saints. One thing I would like to do in the future is have a fibromyalgia support group where I live. There isn't one right now. I need to be able to walk there as I don't travel independently. I think meeting like minded folks would help alleviate loneliness.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • StickmanStickman Member Posts: 81 Pioneering
    I feel lonely when even I'm with people, acquaintences, friends and family.  I suppose the best way to describe it is that I feel lonely inside.
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    I have found one of the most important lessons has been being able to recognise that I don't have to build high walls around myself to keep people out to stop me getting  hurt or let down or being a burden to others. The walls also keep me in and stop me from moving forward. You want to hide yourself away from other people when you feel like a freak. But really nobody is perfect and everyone has issues. We don't need to be on guard.
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • Connie00Connie00 Member, Community champion Posts: 255 Pioneering
    Just a Thought   :)

    You can be in a room full of people and still feel lonely, you feel detached, like you are looking in through a window, you see them ,they see you, but don’t. they see somebody with a disability, that makes you different to them.

    That makes you scary, they don’t know how to react, they shire away from you, they huddle in their select groups, you could swear they are talking about you,

    Or are you paranoid?  are you approachable? or are they uniformed? are you giving off that air to them that you don’t want to be involved. 

    We all get like this from time to time, if we didn’t, we wouldn’t be human. So next time you find yourself in this situation, just tell yourself you are as good as anybody else, just different, something about you is not working as well as it should do, 

    but that does you could make your disability a talking point, or make an apology out of your disability, or a joke out of it People love to laugh with you. 

    Think on my Friends B) 



  • dolfrogdolfrog Member Posts: 434 Pioneering
    Connie00 said:
    Just a Thought   :)

    You can be in a room full of people and still feel lonely, you feel detached, like you are looking in through a window, you see them ,they see you, but don’t. they see somebody with a disability, that makes you different to them.

    That makes you scary, they don’t know how to react, they shire away from you, they huddle in their select groups, you could swear they are talking about you,

    Or are you paranoid?  are you approachable? or are they uniformed? are you giving off that air to them that you don’t want to be involved. 

    We all get like this from time to time, if we didn’t, we wouldn’t be human. So next time you find yourself in this situation, just tell yourself you are as good as anybody else, just different, something about you is not working as well as it should do, 

    but that does you could make your disability a talking point, or make an apology out of your disability, or a joke out of it People love to laugh with you. 

    Think on my Friends B) 



    Hi @[email protected]
    You have described very well what it is like to live with my type of Auditory Processing Disorder.
    I have problems with groups of more than 3 or 4 people, my brain having problems processing what they are saying if at all.
    Some years ago I used to go to meeting set up by so called medical professionals and so called support groups who claimed to understand the nature of my disability.

    It turned out that they wee only marketing their professional services and / existing therapy programs (the industrial providers of which funded many of the meetings) They had no real interest in understanding the complex nature of my disability, as it would require them to work with others in what is called a  multi discipline team (multiple professions) listening ot other professionals input and working together to provide the support that those who share my disability need and require on a life long basis.

    So it is the corrupt negligent UK health professionals (audiologists, speech and language, psychologists) who are the direct cause of my loneliness due to their failure to explain the nature of my disability to themselves and then to others in the wider everyday community. 
  • davetdavet Member Posts: 70 Courageous
    I feel lonely most days, my physical disability prevents me from walking very far, my lack of money prevents me from having a car, yet even when friends or family pick me up and take me out I still feel very apart from people, I played a lot of rugby in my youth and the last team I played for often have nights out  and someone will always pick me up to go, but it is so very different to what it was like, we used to all stand in group chatting, now I have to sit down apart from the group, we would spend a lot of time making fun of each other but I have noticed people avoid making fun of me which makes me feel not included, with family get togethers my siblings talk about the improvements they are making to their houses, the new cars they are getting and which holidays they are going on, and again I feel left out, I have always been a social person and when I do get out to the village centre I will always talk to strangers, and the drivers at the local taxi company I use know me quite well and are always happy to chat, but this feeling of being alone and lonely seldom leaves me and I honestly dont know what the answer is 
  • newbornnewborn Member Posts: 621 Pioneering
    Davet it sounds  as if people value you.  Without knowing the reason you sit apart from them, is it just that you sit and they stand?

    It may not apply to you, but some get into that situation because they don't know about wheelchairs with rising seats, or with a standup option. 

    Know  what you mean by wanting  people to  make  fun of you, to show they are  still treating you exactly like they  used to.   

    Two things you might consider, though.  Could it be that  they used to think one way, but have seen the light now  that one of their own  is disabled? 
    Or, could it be they still think disabled people should be jeered at, but have enough respect for you that they hold back?

    Either way,  you are winning.  
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @davet   Pleased to meet you . Sorry to hear your experiencing certain aspects of loneliness.

    I am myself live on my own and do find it very difficult to interact. In fact most instances found that was being under valued not appreciated by so called friends.

    These friends are they friends or are they thinking like you. Being supportive and interested in you.  Have they ever approached you for just being you and wanting to help.

    Be some one to rely on.  I had the misfortune one time too many actually to be the one the friends I acquired to be taken to events not because I was a friend.

    Because they felt got the guilty feelings and needed to feel good about themselves. Helping them mentally feel good .  

    More so around Children In Need day or Sport Relief. As one snidely said to me your special day to tomorrow.

    Must share my response why do not we have a day for you then. But will not go down to your level.

    I was born with my disability . Also know that those have some how got ill or disabled finding the changes to adapt can be so hard. Acceptance of your self and from others can be a sometimes a wall to smash down to break an obstacle.

    One thing I would like you to do is make a list of all the qualities and attributes you have. The skills and talents the abilities you have the qualifications.

    What do you like about yourself.? Then keep that look at it every day.

    I had this from a support worker from mental health charities.  This is what they do  things like this at meetings and we can then evaluate the whole picture.

    Look at that and think is that any of it useful to use to get my self esteem back..  Make a plan some goals some aims to cope with loneliness.

    I did this one year got rid of excess baggage.  Those former friends who missed an opportunity to be respectable of me and my disability .

    Instead casual callers. Called fair weather friends got rid of the lot. Not because they are who they are but because needed to have to evaluate the whole scene.

    Of my reliance on me. Using me for my money, car and anything else. Comes in all shapes and sizes.

    So I live on my own have no one but cope doing the best for me.

    If they do not think like you and be like you then need to remove yourself and consider ways to deal with your situation.

    I every morning use this forum to help, guide and support me. Found ways through the day to inspire heal and recover. Use my talents, skills abilities to consider options I have.

    The list I spoke about .

    Outside in the community always be some one whom can use you as a volunteer. A organisation a charity or a support network.

    Have some interests what are your hobbies and anything you like to do for pleasure. Always plenty of people on line to be contact with does not have to be face to face.

    Look on line have a scout around your area.  Make enquiries.

    Create a folder of organisations, numbers helplines and support you can rely on to get you out. To appointments anything you need.

    Make a plan anything to get rid of .  Start a fresh.  Declutter.  Have a diary put into it days you have to be good to yourself.

    One useful tip do a lot on line does help. Delivery of shopping and other household goods.  Banking.  Medication.

    You mention not a lot of money. Have a review of your finances.

    Use on line shopping. Supermarkets like TESCO have a midweek saver. Helps you to  budget.  

    Speak to CAB or us the community benefit advice and guidance.

    Is there anything I can help with or the community?

    Time is a great healer. I have bad days and good days but know the answers are being good to yourself and finding ways to deal with the situation you have.

    Be proud strong and think positivity.

    Want a chat or talk always here.

    Pleasure to meet you.

    Take care.

    @thespiceman




    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,723 Scope community team
    Hi @davet. I'm sorry to read this and I can very much relate to that feeling of exclusion, however unintentional it might be.

    Have you looked into any groups local to you or spoken to your friends or family about how you're feeling? I know you probably feel like you can't, or wouldn't even know where to begin, but I'm sure they wouldn't want you to feel that way if they knew you were.
    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • kennykenny Member Posts: 77 Courageous
    Having friends is something most disabled people long for, I have cerebral palsy, am wheelchair bound, yes I know people who might have a chat, or see people in the gym and at football matches, but I feel a longing for a friend, a mate to go to the pub with, I have even advertised for one in desperation! When I have managed to form some sort of friendship, the person has always drifted away, who wants to be lumbered with a wheelchair, not many, I rely on my parents a lot, and as I am 34, it's not ideal, but parents will do anything for me. Friends I had as a youngster have all gone on to marry, have kids, got employment, got girlfriends, all the things that I cannot do, I feel as though life has left me behind, in a time warp, people say join local clubs, but where are these clubs and meeting, I've never found any yet
  • kennykenny Member Posts: 77 Courageous
    By the way nobody answered my advert 
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @kenny   Thanks for sharing.  I done a lot of what you have said.

    Once put advert in the local paper thought it might help me.  So I set up a meeting place any one who wishes to come the usual spiel.

    Got four people two ladies and two gents who proceeded to ignore me and went off with each other.

    You could not believe it.

    One other thing you done nothing wrong but sometimes desperation and the combination of wanting and needing can suddenly put people off.

    Trust me been there so many times.

    One avenue is to look at volunteering. Make a list of your skills and abilities, talents. Speak to your local volunteering bureau.

    See what they say.  Have a look on line. You have Cerebral Palsy I know that may in your opinion cause problems but I can not see that, my view.

    You probably have a lot of knowledge and expertise that others may want to listen to.  Use and ask you.  For advice and guidance on your disability.

    Look at wellbeing course local Colleges. Do things that interest you.  My interests met a lot of people.  Nutrition and diet look at courses like to self improvement.

    Mental wellbeing think if I do this course useful for my own self not thinking of meeting people.

    Staff at many Colleges are trained to assist those with disabilities or illness or certain conditions.  Have the technology as well something to look at.

    You mention all the things you can not do.  In do understand that but at the same time . It is thinking positive.

    I have a disability and a illness success comes in cans not can nots.

    I had two parents who told me the truth. You will not have a job unless it is something we can approve of. Have no relationships be under our home our rules our domain the rest is history.

    Maybe you need to address what is really the person you are.  Find ways to cope.    You say reliant on your parents but at the same time do wish for them to be in control of everything or do you.

    My parents I did the opposite  got away found ways to deal with anything. Have and found acceptance.

    Understand the need to love thy self regardless of your disability. Your important and valued need respect back then find ways to do and cope with that.

    You will find people will want to know you.  Be supportive be your friend and maybe never know what will happen.

    I was once in a counselling session had this therapist every time she suggested something.  I can not do this because of my disability have problems.

    After years of abuse and mental harm.

    If we throw stones in our path do we go around or over or do we stop still.

    Phrase came to mind.

    I do myself yes if I had problems or difficulties or need to help with something then be and ask.  That the right thing to do.  If I can not do this.

    Life is a journey.  Make and think of ways to be positive not negative.  I have those days . We all do but is finding the equal balance and getting the self esteem back.

    Always in my mind daily.

    I am here to reassure you I am here to be supportive.

    Please take care.

    @thespiceman






    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
    Recipes
  • Adrian_ScopeAdrian_Scope Testing Team, Community Team Posts: 7,723 Scope community team

    @Debbiedo49, have you thought about setting up your own fibromyalgia support group? Having a bit of control over the location could help you with accessing it and although these things take a while to build, it could be a great way of you meeting people in a safe space. Local churches, schools, libraries and community centres often let people use their space for these things for free or a small donation and you could advertise for free in these places on via social media.

    I think a lot of people feel the same as you @Nikkif and when feeling lonely think they have little to contribute and not much to say for themselves. @connie00’s advice is really relevant as feelings of loneliness can tie into our own sense of self worth and it’s really important to remind ourselves that we are just as good as anybody else.

    Senior Community Partner
    Scope

    If you have a few minutes to spare, we'd appreciate your feedback on our online community.
  • Richard_ScopeRichard_Scope Community Team Posts: 2,492 Scope community team
    edited July 2019
    kenny said:
    Having friends is something most disabled people long for, I have cerebral palsy, am wheelchair bound, yes I know people who might have a chat, or see people in the gym and at football matches, but I feel a longing for a friend, a mate to go to the pub with, I have even advertised for one in desperation! When I have managed to form some sort of friendship, the person has always drifted away, who wants to be lumbered with a wheelchair, not many, I rely on my parents a lot, and as I am 34, it's not ideal, but parents will do anything for me. Friends I had as a youngster have all gone on to marry, have kids, got employment, got girlfriends, all the things that I cannot do, I feel as though life has left me behind, in a time warp, people say join local clubs, but where are these clubs and meeting, I've never found any yet
    Hi @kenny
    I'm sure we have spoken before. I live with quadriplegic CP and use a wheelchair. I have experienced a little of what you have mentioned when I was a teenager but I'm at the point now where if you don't like who or what I am then jog on. It does take a while to get to that point. I would love to talk with you.
    Drop me an email.
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
  • debbiedo49debbiedo49 Member Posts: 2,906 Disability Gamechanger
    edited July 2019
    @Adrian_Scope I have thought about it but I don’t think I could do it on my own. 
    Its something to think about. 
    Even an online support group would be good. I’m on Instagram and follow lots of fibro folks 
    thanks
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • pollyanna1052pollyanna1052 Member Posts: 1,999 Disability Gamechanger
    Hi in our area we have a body called Staying Well.....this is for people over 60, both disabled and abled. We get together twice a month and have talks, singers, games and there is a real sense of community. Check out your area if this is of interest to you.

    We also have another body called Able/Disabled group. Not a member myself, but I dont think there is an age group. Check it out
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