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All-encompassing isolation when living with a chronic illness

MummyingAndMEMummyingAndME Posts: 2Member Listener
edited 5:32PM in Guest blogs

I’m Sophie and I live with several chronic illnesses, the most disabling of which are my M.E. and vestibular migraines. I am mostly a wheelchair user when travelling anything more than 20 metres, something I never thought I’d be saying in my mid-30s.

A few months ago, I set up my blog, Mummying and M.E. as a way to raise awareness of living with various chronic conditions. Little did I know, it would become a form of therapy for me, a place where I can share the ups, the downs and everything in between.

When I was asked to write about the term ‘isolation’ for Scope, I was thoroughly honoured. As a relatively new blogger, to be chosen based on my previous work was a real boost to my confidence. However, I was extremely nervous, more nervous than for any other post I’ve written so far. 

How would I put into words the crushing level of isolation one experiences when living with chronic illness? How would I explain what it really is like without sounding like I’m moaning and just being a Negative Nelly? 

An all-encompassing force

Isolation is something that until you have really felt it, doesn’t make sense. It’s an all-encompassing force, leaving you a different person to who you may have been before. It is one of the things that, if you weren’t necessarily depressed before, you might be now. Isolation shows you who your real friends are, those that are properly there for you and really will be with you through thick and thin.

 

I used to be a primary school teacher. I was proud of my job and what I’d done to work up to it. I’d completed 3 degrees: undergraduate, PGCE and then an MA in Education. I was proud of having worked so hard. I enjoyed my job. I enjoyed speaking to colleagues on a daily basis and enjoyed basic interaction with others, both with the children and adults.

In my spare time I would sing in a choir, and even joined a running club to be able to train for the London Marathon. Each of these brought with them socialisation and again, interaction with others.

The impact of social interactions

Safe to say, nowadays neither of these hobbies are compatible with M.E. I’ve attempted returning to choir several times over the last year but each attempt at getting through even half a rehearsal left me thoroughly exhausted, ‘spoons’ well and truly depleted.

It doesn’t take much to realise that losing both one’s career and hobbies has brought with it a loss of interaction with others and therefore isolation.

Isolation in my case has been one of the hardest things to come to terms with. Alongside my M.E. and other chronic illnesses, I am also diagnosed with recurrent depressive disorder. This means my mind has a life of its own, plunging into a depressive state easily and frequently, often from the smallest or seemingly insignificant triggers. Time spent by myself for too long tends to be one of these triggers.  

Beating isolation, one moment at a time

Therefore, I have to get myself out and about. I’ve had to hire a powerchair to do this. I just have to see people. More often than not that’s the cashier at the local supermarket down the road, or the barista at Costa (other coffee shops are available). The extent of our conversation typically is: “how are you today?” with the very British response of “good thank you” (even if you’re not actually ok, pouring your heart and soul out to a stranger is apparently frowned upon).  

Therefore, on those days when it really is impossible to get out and about, where the sofa and/or my bed are my only destinations, social media is my interaction. To ‘meet’ people who are going through exactly the same situation as you, isolation and all, is wonderful. Isolation becomes that bit more bearable when sharing your community with other likeminded people. For that very brief moment, where you’re sharing amusing anecdotes, isolation is no longer. To the chronic illness community, thank you for this.

So, if you see someone out and about using a mobility aid (or not, remembering not all disabilities are visible), say hi and smile. You never know what that person is going through. You never know what impact your smile could have on them. You never know, you might just be able to relieve their isolation just that little bit.

What does the word ‘isolation’ mean to you? What do you do to help yourself cope with isolation? Let us know in the comments below!

Replies

  • Tammyjane33Tammyjane33 Posts: 371Member, Community champion Pioneering
    @MummyingAndME 

    Hi Sophie, I've just looked at your blog and it's amazing, can I ask what platform you used to make the blog please?
     I use wix St the moment but I can't get it to look how I want it lol.
    I think you are an amazing, talented writer.
    I have a rare disease which causes chronic pain. It would be great for us to connect if that is ok with you. :) hope to talk soon and thankyou for joining us here on the site
    Tammy 
  • MummyingAndMEMummyingAndME Posts: 2Member Listener
    Hi Tammy, aw bless you thank you, that’s so kind of you. I use Wordpress.com and have a business plan on it (purely so I could access the nicer themes and layout etc). 
    And yes I’d love to connect on here x 
  • April2018momApril2018mom Posts: 2,473Member - under moderation Disability Gamechanger
    Hello and welcome! 

    I am going to have to look at your site as the blog sounds amazing. I concur with you fully. It is important to keep moving and be active as much as possible. Have you seen our social isolation posts on here or not? We must end social loneliness in this country once and for all. This is a topic near and dear to my heart. Forgive me. 

    Disabled people need to get out there and make a difference. I have had issues trying to find suitable activities for my cared for person apart from cooking lessons however. So we now are looking at mainstream clubs and activities for him. I have some information on a Surrey wide playscheme that seems to be for disabled kids.

    Social isolation can be really embarrassing and crippling at the same time. I have experienced it in the past. It is not a nice thing at all. Nor is it healthy either. And frankly it is boring. Who wants to be confined or stuck at home all day with nothing to do?

    Personally I hated it. Everyone needs opportunities to make some friends, learn new skills and try out new things that force them out of their comfort zone too. It is vital to their growth seriously. Where would we be without all these clubs and activities etc for disabled people? It is 2019 after all. 
  • Jean EveleighJean Eveleigh Posts: 87Member Pioneering
    I find social media a lifesaver to combat my isolation, I have a few real-life friends (can count on one hand) and several good friends and about 100 or so contacts on social media (Facebook and Instagram).

    I have a part-time job - 4 hours per week - but have been off ill since last Xmas and will not be returning until at least Feb; I also do some expert by experience bits for Scope and the Research Institute for Disabled Customers if I have the skills and feel well enough.

    I would say I spend, 80% of my time at home, 60% of that online - I always have the TV on in the background as I cannot stand silence it is the first thing I put on when I wake up and more often than not it will still be on when I fall asleep.

    I have my partner, my dogs and my cat and that's me :-)

  • TopkittenTopkitten Posts: 1,003Member Pioneering
    I would certainly agree that chronic conditions usually lead to severe isolation issues but I'm afraid that I find it difficult to read long posts (despite my usually producing such) and understand / take in the content. Perhaps the two are linked somehow but that is merely speculation.

    I'm afraid I haven't read the blog and my excuse for that is that I am old and have never understood their use or usage to any great degree. I would say though that anything that helps a person keep interacting with the community at large can never be a bad thing, as such.

    Hope I am not out of line or simply repeating statements already made.... I blame it on old age, lol!

    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.
  • debbiedo49debbiedo49 Posts: 2,902Member Disability Gamechanger
    This is a fantastic topic and extremely relevant to folks with any form of disabilities or illnesses. As I do suffer from social isolation, I know how it feels, even when I am out and about, to just feel alone.  I do try to make eye contact with others when I'm walking to work and say hello or smile at people. I started off feeling stupid but the more you do it the easier it gets. It costs nothing to share a ☺.  Growing up I used to talk to older people at the bus stop being aware that this might be their only contact that day. Now I'm on the other side. I'm looking for people to smile at me or say hello. I've become friendly with a few dog walkers over past couple of years and it's progressed to stopping for chats as my confidence has grown with them. I think people who are good to their dogs are usually good people lol. When I don't see them I miss them and look forward to next time. Also, I get social interaction at my job. It's ain't with vchildren. But it's priceless. The adults there, not so much lol. You would think doing that would be enough to spur me onwards to do more. But having chronic illness, right now I can't do more. I have to do what I can when I can. I seem to just be able to get so far forward and then there's a brick wall I hit due to sheer exhaustion an lack of resources within me. I would absolutely encourage people to take that step towards any opportunities around you to interact with others who will add quality to your life, and you to theirs. X
    💜🏴󠁧󠁢󠁳󠁣󠁴󠁿
    I am a fibro warrior !💜♏️
  • newbornnewborn Posts: 326Member Pioneering
    Such an interesting thread. Thanks.   The one reservation is, segregation was not  approved of when  South Africa did it, by race. It shouldn't be approved of here, by age, by disability,  or by red hair !  Inclusive not exclusive,  please. 

    There are ways, for example the (?)Calvert Trust (?) does outdoor activity including rock climbing adventures for both disabled  and t.a.b.s (temporarily able bodied,  which is all any human can be). There are loads of similar  schemes. 

    Once, a rich self made business woman took part in a BBC series investigating  different hobbies. The only one she drew the line at was a club exclusively for blind people.   It felt all wrong for her, because she had never been segregated.  She was, though, totally blind.  Mostly she more or less forgot that, being busy with husband, children, and her business. 
  • ebrionebrion Posts: 1Member Listener
    Hello Sophie 

    thank you you for sharing your article on isolation. I only need to read a little to know we have much in common. I’ve recently become disabled in just over 12 months. Though my other conditions are a disability I never acknowledged that until everything fell apart and one condition worsened the other. 

    I too suffer from chronic vestibular migraines and ME along with BPD, DCD and learning disabilities dyspraxia and dyslexia. I now use a wheelchair as my balance and coordination has been damaged I also exhaust very quickly doing simple tasks like school runs which can leave me in bed for days. 

    I was was also a art teacher in a private school in another county to where I live initially I was signed off sick for 10 months until GP said take early retirement on medical grounds. I’m 45 years old with no savings. I worked while I was ill until I could no longer drive eventually surrendering my driving licence to the DVLA. 

    My my mental state has taken a battering at my lowest I considered taking my own life. I had worked so hard as a single mum to get my education to teach and when I got there it was a constant struggle financially to even keep a roof over my children’s heads. I’ve lost so much of myself to this along with my identity disorder trait of BPD. I’ve lost contact with people and place and the things I loved to do. I wish I could articulate better without sounding selfish or self centred but I internalise so much to protect myself and those I love. Isolation for me was losing who I was and the grieving I still do from time to time.

    Im so grateful to hear from someone like me so thank you again. X 
  • Jean EveleighJean Eveleigh Posts: 87Member Pioneering
    @ ebrion - I can completely understand the loss of "self" you are experiencing I have gone through the same thing myself.

    I was always the first to arrive and last to leave, first on the dance floor last off etc. very gregarious, vivacious and outgoing - now nowhere near :-(

    I started to need my wheelchair in 2007 and my sense of self changed dramatically not just because of how I saw myself but how others around me treated me for the first year - eighteen months I tried to act as if nothing had changed, still going to the same places trying to be myself but I didn't have the same stamina, I wasn't able to dance, couldn't drink as much so I changed BUT the people I used to think were my friends changed as well, some refused to come and sit with me. ignoring me when I called over to them, others said I had changed the atmosphere and spoiled their ability to "let loose" so I stopped going out.

    After a few years, I started to go out sporadically but it doesn't feel the same I try to act the same but I'm a pale imitation of the person I used to be and going out just upsets me as it reminds me of what I have lost both in terms of physical ability, friends but more importantly my sense of who I am - people will see me bopping around in my wheelchair (top half dancing swaying to the music raising and lowering shoulders like mom&pop dancing etc) and say "oh your obviously having a good time" when inside I'm dying cause I can't get onto the dance floor and let loose as I used too, my partner can't grab me by the waist and swing me around the best we can do is sway while he holds me upright (I can walk if holding onto crutches, a walking frame or my manual wheelchair but not unsupported, and can no longer dance :-( )

    Now I am isolated, my social networks are all online apart from a few elderly neighbours, I have a small parttime job but have been off ill since Xmas, and even so, am not usually included in official excursions birthday or leaving parties.

    I try to act as if it doesn't bother me that I'm happy with my lot because this is my life there is nothing I can do about it, there is no cure for my condition, they don't even know what causes it so there is no point in wishing for anything else - but if I had a magic wand??????
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