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The Loneliness of Being Disabled in a Global Pandemic (and How to Tackle It)

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Danielle_2022
Danielle_2022 Community member Posts: 266 Pioneering
edited July 2022 in Coffee lounge

Thank you to Danielle for this guest blog, and for sharing your experience with us. You can follow Danielle's blog over on this page.  

The Loneliness of Being Disabled in a Global Pandemic (and How to Tackle It)

Being disabled can often be lonely. Sometimes, there is no escaping that. As cliché as it sounds, I was surrounded by a loving environment as a child, yet always felt so incredibly sad. Despite the best efforts of everyone around me, I could never shake the feeling of being misunderstood. I didn’t know anybody else that used a mobility aid, especially not anybody the same age.

Having Cerebral Palsy is interesting when trying to navigate feelings like this, honestly, since no two people have exactly the same symptoms or level of ability. Therefore, I found it very easy to believe that I was completely alone in these experiences. Destined to never quite find a home in any social situation or live beyond the expectations of other people. Spoiler alert: outside of my family, nobody expected much.

Even now, my medical team refer to me as being “a complex case”. I’ll take that as a compliment. The point, though, is this: these feelings have only been exaggerated by the pandemic. Socialising and feeling part of society is a conscious effort these days, which I don’t always succeed in. More than ever, policymakers share the narrative that my life is inherently less valuable because I am disabled and vulnerable, making it a fight to remember that not everyone shares this opinion.

Danielle has shoulder-length brown hair She is sitting in her wheelchair and smiling at the camera She is wearing glasses and a purple jumper

When I first made the decision to start blogging, it was something of a survival technique. The isolation was really starting to affect my mental stability, so I decided to write about it.

I had never been that vulnerable on the internet before, but it was necessary. I had to shout into the void and hope for the best. In the immediate aftermath of this, non-disabled people from all across my social media began to reach out, offering their friendship. Considering that I have consistently felt invisible in these circles before, it was kind of a big deal, in a good way.

However, I never felt safe enough to accept the offers in-person, so these messages slowly stopped altogether. Restrictions were eased and most people had the privilege of forgetting I suppose. 

Moving forward

For me, life doesn’t look much different at all. I have recently allowed myself to attend physiotherapy appointments and visit my nan’s care home, which is now reporting COVID cases. It’s scary and difficult, friends. But I refuse to let myself spiral. Go back to square one. I don’t deserve that.

So, where do we go from here? In truth, the answer is a very simple one: connect with the disabled community, using platforms like this one. If you can relate to a small part of my story, then take comfort in this quote from a poem called ‘This is Not the End of the World’ by Neil Hilborn:


“whatever you’re feeling right now, there’s a mathematical certainty that someone else is feeling that exact same thing. This is not to say you aren’t special, this is to say thank God you aren’t special”.

 

I remember how scared I was to make a post in the first support group I found, almost a year ago now. Guess what? Here’s a revelation. It turns out that even if you find people with different disabilities, it doesn’t matter. It’s irrelevant, in these spaces. So many of the feelings are similar regardless, making these conversations an always important and validating reminder that we are not alone. We deserve to live proudly and boldly. Being marginalised is rough, which is exactly why we have to stick together. I believe in you.

Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.

Comments

  • Ross_Alumni
    Ross_Alumni Scope alumni Posts: 7,652 Disability Gamechanger
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    Thank you Danielle, this was a really insightful insight into your experience of the pandemic, and I'm sure it will resonate with many.
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  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    I have my own disability but I also look after my mum who has dementia I have felt isolated in a different way because there is no help and support for the people who look after people with dementia and its realy hard most people tend to avoid me if my mum is with me  but I have carers when I go to work but I cant leave my mum on her own so she has to go everywhere with me 

    I cant go out the room  because as soon as I do she starts shouting is anybody here if mum doesn't want to go out out I can't go out so it's realy hard sometimes 
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    What a brilliant piece @Danielle_2022 - so well written and I'm sure your words encapsulate a lot our members feelings/thoughts. I look forward to any future blog posts that might be in the pipeline!
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  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    Thank you Danielle, this was a really insightful insight into your experience of the pandemic, and I'm sure it will resonate with many.
    Thanks for all of the support recently, Ross. I'm just here setting up a few things at the moment. Looking forward to starting my volunteer role properly tomorrow!
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    I have my own disability but I also look after my mum who has dementia I have felt isolated in a different way because there is no help and support for the people who look after people with dementia and its realy hard most people tend to avoid me if my mum is with me  but I have carers when I go to work but I cant leave my mum on her own so she has to go everywhere with me 

    I cant go out the room  because as soon as I do she starts shouting is anybody here if mum doesn't want to go out out I can't go out so it's realy hard sometimes 
    I'm sorry to hear that things are so tough for you at the moment. I think there's so much of this stuff that other people just don't understand, which can also make it hard to access support. But I hope you know that there is a whole community of people here going through similar experiences & we are always ready to talk, if you need anything, on good days and bad ones :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    What a brilliant piece @Danielle_2022 - so well written and I'm sure your words encapsulate a lot our members feelings/thoughts. I look forward to any future blog posts that might be in the pipeline!
    Thank-you so much, Libby. It feels so nice to write these vulnerable things here and feel seen by people with similar stories, too. Definitely so important to keep talking about and I do plan to post more in the future!
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Libby_Alumni
    Libby_Alumni Scope alumni Posts: 1,251 Pioneering
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    I agree @Danielle_2022, it's so important to normalise conversation about challenging times/vulnerability, as we all experience it throughout our lives! I look forward to your future posts :)
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  • CoffeeFirst
    CoffeeFirst Scope Member Posts: 203 Pioneering
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    @Danielle_2022. Writing and sharing our thoughts and feelings is so important. Thank you for sharing yours, such lovely writing! I look forward to reading more 😀.
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    @Danielle_2022. Writing and sharing our thoughts and feelings is so important. Thank you for sharing yours, such lovely writing! I look forward to reading more 😀.
    Thank-you so much for your kind words, @CoffeeFirst! I hope that you will always feel able to share your own thoughts and feelings here, too :)
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • Lisatho11987777
    Lisatho11987777 Scope Member Posts: 5,911 Disability Gamechanger
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    @Danielle_2022 I feel so alone sometimes and people dont listen or understand  thank ypu gor your kind words 
  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
    edited February 2022
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    @lisathomas50,
    Although our experiences aren’t entirely the same, I can relate to what you said about being misunderstood. I will always be here to listen and offer support, as will everyone else in the community. Take care of yourself, too. You deserve that, even though it can be easy to forget sometimes!
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • ProudMumForever
    ProudMumForever Community member Posts: 235 Pioneering
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    What a fabulous insight , i actually read it twice !!
    Ive just joined a few days ago , and written an introduction just now , and the word i also used was LONELY . 
    I look forward to reading more .

  • Danielle_2022
    Danielle_2022 Community member Posts: 266 Pioneering
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    @ProudMumForever,
    Thank-you so much for your kind words. Really. It helps a lot. I’m so sorry to hear that you share so many of the same feelings, but I’m hopeful that being here will help you to feel a little less lonely, as your comment has done for me. I’m grateful that we can support each other and I’ll definitely write another post here soon enough <3
    Community Volunteer Host (she/her) with a passion for writing and making the world a better place for disabled people to exist.
  • ProudMumForever
    ProudMumForever Community member Posts: 235 Pioneering
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    @Danielle_2022 Hello and good morning 😊
    Reading other members comments , on any of the topics discussed ,makes the feelings of loneliness start to float away 🦋 .
    Every person is on their own personal journey , im glad im in good company as i meander through mine 😊 .
    Take care of yourself .
  • Jo_2022
    Jo_2022 Community Volunteer Host Posts: 297 Pioneering
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    Hi @Danielle_2022! 😊 A warm welcome to you on the community. 

    What a lovely blog! Certainly loneliness is an issue for many disabled people. Thank you so much for sharing this!

    I have always felt excluded from social situations because of some family issues, and reading your post made me feel better.

    Sending you a hug 🤗 

    Community Volunteer Host with a passion for human rights.


    Please note: if I use the online community outside of its hours of administration, I am doing so in a personal capacity only.

  • Shoolby
    Shoolby Community member Posts: 12 Connected
    edited May 2022
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    Hi Danielle
    Such a wonderful Blog and I am now 'following' you on Wordpress so that I will receive all your posts. The community at WP are very supportive too.
    Take care
    Steve
  • Maurice123
    Maurice123 Community member Posts: 109 Pioneering
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    Hi Danielle
    I have just read your blog. You are incredibly open and like Alex-Scope appear to have mastered your situation very well. I have been reading stories about CP and some of them are very sad. We must all try to find some good things in our lives and try and develop them.
  • Steve_in_The_City
    Steve_in_The_City Scope Member Posts: 629 Pioneering
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    Hi Danielle:
    You express yourself beautifully; thank you for having the courage and the confidence to raise the issue of loneliness and isolation among disabled people. Until a few ago I had a very active social and working life, but circumstances beyond my control changed all of that and I found myself entirely alone except for 3 very good email friends that I will never meet. If it is physically difficult to get out and about and you happen to be alone, then I think forums like this are invaluable, as people can communicate with other disabled people who understand the issues. I too decided to "shout in to the void and hope for the best" and I am glad I did. Here is wishing you happy and rewarding blogging, and thank you for sharing your thoughts with us. Steve
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