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Social Media and Isolation at Christmas Time

PippaScopePippaScope Posts: 837Member, Administrator Scope community team
edited December 4 in Guest blogs

Pippa is a recent graduate with multiple long-term conditions. She blogs about accessible theatre, lifestyle and fundraising at Life Of Pippa, and talks to us today about the impact of social media during the festive season.

Isolation is a year-round problem faced by disabled people, but never seems more prominent than at Christmas time. Whilst the rest of the world prepare for fun and festivities, it can take some serious strategising to get yourself through the season. For me, my personal battles involve meticulously planning how many activities my chronically ill body can cope with, pacing gift preparations (please don’t judge me when I tell you I started on my Christmas Cards in October…) and the most difficult task to date: finding Christmas Dinner components safe to eat with my severe allergies.

girl sat in wheelchair smiling and holding a huge white teddy bear in front of a background of Christmas lights

Although all of us face our own unique health battles, one thing that I can safely say is that social media at Christmas time can be an utter nightmare. It’s difficult not feel down about your situation when you’re sitting in a waiting room scrolling through a feed filled with exciting photos: friends beautifully made up and flouncing off to Christmas parties, cute couples on festive dates, people travelling up and down the country to spend time with their families… Whilst we’re all aware that what social media portrays is not at all a representative insight into people’s situations, it’s still a reminder that people are out there living their lives, whilst I’m here wondering whether I’ll be well enough to wash my hair today.  

However, social media has also been a blessing in disguise for myself and many others in my situation: it’s allowed us to find other people like ourselves. Some of my closest friends are people I’ve met through the online chronic illness community (known colloquially as the ‘spoonie’ community), and I wanted to find a way of using social media to reduce our feelings of isolation, rather than letting it have the opposite effect.

In 2015, I introduced the SpoonieXmas hashtag to Instagram for the very first time. I explained to my little network of online friends that this would be a way for us to share our festivities with each other: simply snap a picture of whatever you’re up to, write a little caption if you feel like it, and upload it with the hashtag. Then you can scroll through the hashtag and look at other people’s photos: give them a like, leave a comment, and have a chat. This allows people to share how they’re celebrating Christmas, regardless of how that may be, and still connect with others in similar situations.

The hashtag rapidly became one of my favourite things about Christmas time: even whilst I was stuck in bed, I could scroll through people’s posts, and the nosey part of me revelled in finding out what everyone else was up to. More often than not, there would be somebody else also stuck in bed or under the weather, and despite feeling sad that they were facing it too, this massively helped to reduce my Christmas-oriented FOMO (Fear Of Missing Out).

The best thing about the hashtag was that it became a ‘glorified Instagram free’ zone: whilst people were welcome to share beautiful edited photos of their celebrations, and many did, they were just as welcome to share a photo of their dark room or their medication, and tell people that they weren’t feeling so chipper today. For me, an ultimate advocate for the little things in life, it was the perfect platform to share my home comforts. No, I might not be going to a crazy Christmas party, but look! My socks have Christmas Puddings on them! Any day involving Christmas Pudding socks is an EXCELLENT day.

The best thing of all was that other disabled people were quick to jump on board. Last year’s tag, SpoonieXmas2016, had 455 photos uploaded over the course of December. The posts ranged from selfies in Christmas jumpers, to festive bakes, to decorated medical equipment, even to somebody’s pet pug in his woolly little Winter hat. This year, I’ll be making a point of promoting the hashtag SpoonieXmas2017 at the beginning of the month, and I can’t wait to see what people post this year.

Do you use social media? Do you see it as a positive or negative thing with regard to disability? If you’d like to share your own experiences, leave a comment below! 

Replies

  • WeeAndCuddlyWeeAndCuddly Posts: 2Member Listener
    I believe Social Media Can Be A Positive Tool If Used In The Proper And Correct Manner.

    However, Having Stated This... Some People/Organisations/Agencies Can And Do Abuse The Social Media System With Regards To Causing Havoc And Belittling Others For Their Own Agenda... This Is The Negative Aspect Of Social Media.
  • JusticeJustice Posts: 201Member Chatterbox
    Nice blog Pippa,
    You put me to shame, we do try to be positive, but I find Christmas difficult, and right or wrong our way of dealing with it is to simply ignore the whole thing, I think I even did the ironing last Christmas day! Social media? Sometimes I love it, sometimes hate it. I do like forums like this, and the fact that one can find out so much information.
    Facebook I don't like at all, although I have joined a very good Parkinson's support group with nice positive and informative members. Other than that I tend to just use Facebook for some of the nice recipes and craft things that pop up.
    If it wasn't for those I would close my account. My Hubby calls it " My life's better than your life.com " :-)
    Despite my bah humbug attitude I wish all of you reading this a happy and pain free Christmas xx
  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    Thank you for sharing your thoughts @WeeAndCuddly, I completely agree that it's important to use social media in the correct way and with good intentions!
  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    Thank you for your kind words @Justice, I'm definitely not so chirpy when I'm feeling rubbish and know I'm missing out on things! Like you say, I suppose with each social media platform it's a case of working out whether the pros outweigh the cons for you and your situation, and for me they definitely do. For what it's worth, I hope you have a lovely festive season too! 
  • thespicemanthespiceman Posts: 189Member Chatterbox
    edited December 5
    Hello @PippaScope Please can I say what a great blog you have written..  I find using the web this forum helps and assists me in getting through the day..  I need to talk and being lonely and not speaking to many people either by phone or text, email.  This helps.
  • DannyMooreDannyMoore Posts: 634Member Chatterbox
    edited December 4
    From my experiences and views we don't need to be with social groups or in the outside world in order not to be isolated, especially at Christmas time. Just remember the true meaning of Christmas is "light to the world", truth is light, light is spirit, even the spirit of Christ. 

    I spend some time at a place where there's 15-20 people and feel not so spiritual or uplifted. I spend most Tuesday afternoons with my dad and sister only, just the three of us. I feel more isolated when with the group of 15-20 people compared to being with my dad and sister. This proves to me it's the quality of the relationships we have why we get such great feelings, not the quantity of relationships. As long as my dad, sister and I are together at Christmas none of us will feel isolated. It only takes one person to stop someone feeling isolated, not an entire society.

    Here's a verse from the hymn "Count Your Blessings" I like;
    When you look at others with their lands and gold,
    think that Christ has promised you his wealth untold.
    Count your many blessings, money cannot buy your reward in heaven nor your home on high.

    Looking at other people's lives is not going to get us what we want, it's only going to make us want it even more. It takes effort, work and a positive attitude not to be isolated at Christmas. Money did not buy me my dad and sister and the three of us worked to build our relationship, the relationship didn't build itself. At social events I've seen people were not showing a loving, caring attitude towards each other. I would rather spend time with two people showing me love and care than people at a social party showing neither love nor care.

    D&C 78:17-19
    17 Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you;

    18 And ye cannot bear all things now; nevertheless, be of good cheer, for I will lead you along. The kingdom is yours and the blessings thereof are yours, and the riches of eternity are yours.

    19 And he who receiveth all things with thankfulness shall be made glorious; and the things of this earth shall be added unto him, even an hundred fold, yea, more. 

    Each Christmas, year after year I count my blessings to only find myself with more than the previous Christmas. I can already see two more blessings coming that I didn't have last year, 1) I'll be seeing my whole family, 2) My siblings and I will be together again for the first time in over ten years. Count your blessings, be thankful and cheerful for all you have and you won't feel isolated.

    Don't Fear Your True Self
  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    Thank you so much for your kind words, @thespiceman! I'm so glad you find the community helpful, and I hope today is as kind as possible to you.
  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    Thank you for sharing this @DannyMoore, I can completely relate to what you said about feeling more isolated in bigger groups: after I became ill I quickly realised the value in having one of two really good friends, rather than (although not instead of!) dozens of acquaintances. Thanks again for sharing your thoughts, and have a great day!
  • TopkittenTopkitten Posts: 257Member Chatterbox
    I have never particularly liked FB but am forced to stay on there and use it or I lose what little contact I have with my children. This year I have made one or two other contacts that I might be able to at least chat to. I also have been promised by 2 of my children to see them for a short time. My eldest daughter and her children on Xmas eve and my son on Xmas day. Unfortunately my son isn't very reliable.

    I don't think it will be as bad as last year when I basically had to ignore Xmas all together and it was my first Xmas without mum. Still, cannot say I am looking forward to it. I still remember some lovely Xmas's when my children were children.

    I am glad for those of you that have found a way of dealing with it.

    TK
  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    @Topkitten That's a good point about Facebook being necessary just for staying in contact with people, especially for those of us with mobility issues or who struggle to leave the house. For what it's worth, I hope you do get to see your family, and I really hope that this festive season is as kind as possible to you.
  • TopkittenTopkitten Posts: 257Member Chatterbox
    I have made arrangements for some fun on Boxing Day now so even if my son 'forgets' to get up or see me on Xmas Day I still have something to look forward to. Fingers crossed I have things going better this year. My birthday has already been an improvement.
  • john2450john2450 Posts: 1Member Listener
    for me Christmas is hard work part of me wants to like it...and the other part wants to go to sleep until its over, you see I tend to isolate a lot witch is ok its just Christmas reminds me Iam on my own always have been dont get me wrong its good spending Christmas with friends....but I dont know I just feel sad for no reason is it just me that feels that ? sometimes I think Ive been on my own to long Isolation is second nature to me I love my volunteer work that takes me out my self that and my xbox lol and part of me still wants to believe in Santa !!
  • DannyMooreDannyMoore Posts: 634Member Chatterbox
    Hi @john2450,

    Sorry you feel this way, are you sure it's sadness you feel and not tiredness? What you say about yourself are characteristics of an extroverted introvert. You want to like X.mas, you move and separate yourself from others, does being around others make you feel unmotivated and need to recharge after so long? You don't feel able to stay around people all day long?

    Think to yourself, if you don't want to be around people at Christmas and aren't why would you feel sad? Extroverted introverts like I view myself like interacting with others, just not for as long as others. I like spending some of my day with people I know, I spend a bigger percentage of my time alone at my own choice.
    Don't Fear Your True Self
  • TopkittenTopkitten Posts: 257Member Chatterbox
    @john2450 I completely understand. In recent years apart from a few hours at my sisters xmas was just me and mum. When mum died last year I didn't cope at all well. As xmas approached my sister decided not to do the family meal any more as she only did it for mum's benefit. Xmas was looking dreadful, mum was gone and it didn't take much more to push me into heavily overdosing and ending up in a coma for 8 days.

    This year has/will be an improvement but it has taken considerable courage and effort to make sure it doesn't happen again. Not sure I can go through this every year but, for now, I am at least trying.

    TK
  • mossycowmossycow Posts: 258Member, Community champion Chatterbox
    Great article Pippa, I admire your Xmas card writing..... My friends and family know I don't write them now.. Oooooops.... Surely I'm saving trees!? 

    I've always said that social media is just another tool. Like a hammer, you can use it to kill someone, you can use it to build a house....

    Facebook may be painful to see my colleagues and uni friends progress in my dream job without me now I'm left behind.... But I have learnt the way to minimise this now. I've joined loads of interest /hobby groups so when I log on now all I see is my good friends, cool aquariums  Scope updates, music I like, photos of beautiful places....i have moulded Facebook to be what I want it to be

    I have recently discovered twitter and my my, there's so much hate on there. I'm starting to learn how to minimise it and it does seem to make talking directly to people much easier. Today I was talking to Tammy Grey Thomson and Ade Adepts about wheelchairs on trains!

    But mostly, I have made and kept friends I would not have been able to 10 years ago. I find it easier to type than I do hold and phone and talk even  let alone getting out. Especially in weather like this week. 

    It doesn't replace going out... It's what I like the best:face to face contact. Ypu can't hug on Facebook! But I'm so grateful I live in a time that has made it easier for me to keep up with the world and still feel part of it.

    Happy midwinter festival fellow Scopes, whatever your traditions. We're having a bit of Xmas tomorrow as husband workds over Xmas. Tomorrow = sorting and wrapping presents whole eating slow cooker food and watching Xmas films ☺ 

    "To bloom where we are planted"

  • PippaScopePippaScope Posts: 837Member, Administrator Scope community team
    Thank you @mossycow, saving trees is definitely the way to go next year! I completely agree that social media is what you make it, and even though it doesn't make up for missing out, it can help you to still feel included in things, Have a lovely festive season! :)
  • ChaoskayChaoskay Posts: 63Member Talkative
    That's a brilliant blog, thanks for sharing your experience of Xmas.  I find the added pressure of Xmas so difficult too.  I struggle on normal days, let alone days when everyone is 'supposed' to be mega social, have and give lots of things and make loads of effort.  
    I'll happily share the hashing with my friends and family.  I'm looking forward to seeing the #SpoonieXmas2017 posts.  :)
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