My virtual reality

LonelyT

Tanya lives with dermatomyositis (a rare disease that causes muscle weakness) and although it hasn’t been formally diagnosed, agoraphobia.

It’s mid-morning and while downing a cup of coffee I run through my schedule for the day. It’s a Friday, so it’s set to be a busy one.

At 6pm, I’m off to Channel 5 to watch Neighbours. 6.30 and it’s a hop-skip-and-a-jump to Channel 4 in time for Hollyoaks. At 7 I’ll swing by ITV to catch up with Emmerdale and Corrie and round the evening off with the BBC and EastEnders. You see, I’m only in my 30s, but the closest I get to a social life these days is watching repeats of Friends and panel shows.

As of writing, I last made it past my front door on 12th April 2010. That’s not a typo. I haven’t hit the wrong key. I really haven’t left the house in 9 years. The last time I reached the front gate, Gordon Brown was still Prime Minister and Kate Middleton was more than a year away from becoming Duchess of Cambridge. It’s led to an isolation that I really can’t put into words. Time just stands still.

I live alone. I don’t have much in the way of family and the only friends I have are avatar pictures and words on a screen. I discovered years ago that there’s only so many times you can cancel on people before they just stop bothering.

It wasn’t always this way. In my younger years I travelled, I had a vibrant social life, I moved across the country on a whim. A quiet night in wasn’t a phrase found in my vocabulary. But as my health deteriorated, the time between outings grew longer. Days turned into weeks, weeks into months and months into years. 9 and a half years to be exact.

Now, I’m in a cage of my own making and some days, the silence can be deafening and even on the rare occasion that someone pops in, I find that after 9 and a half years of hiding in my house, I have absolutely nothing interesting to say.

I’ve learned things about myself though and I’ve learned a lot about the people around me. It was slow at first – a glacial slide towards becoming a social recluse. My more active friends dropped off when I couldn’t keep up. I remember discovering they’d blocked me from seeing photos of their adventures on Facebook and being told it was because they didn’t want me to ‘feel bad’. They obviously meant well but when I began to spend more of my days in bed, I looked on social media as my window to the world, living vicariously through friends who’d shared the same goals as me. Being suddenly shut out of people’s lives was far worse than having to jealously scroll through photos of my friends posing at Chichén Itzá.

Most tips for tackling isolation talk about getting out there, finding groups with similar interests and slowly making friends who can understand and accommodate your circumstances. I have no doubt that works for some, but unless there’s a book club that just happens to regularly congregate on my welcome mat, that’s never going to happen. My ways of coping are much less ambitious and I owe it all to the Internet. You can argue that the internet has done irreparable damage to society, but for me it’s been a lifeline. It’s enabled me to keep in touch with the few friends who stuck around and opened me up to a world of others. I’m part of a few different online communities where I’ve met friends from all walks of life. Some I share interests with (there are fan groups online for just about everything!) Some share my disability, and others are people also stuck at home or facing isolation and loneliness in other ways.

I could never call my situation ideal, but accepting that (for now at least) my support network is ‘virtual’ and that it’s okay to call people I’ve never met in person my friends, has made a huge difference to how isolated I feel. It also means that when I really need to talk, or I’m feeling terribly alone, whatever the time, help is just a few clicks away – and I think that’s pretty great.

Have you found friends online? How often do you find yourself alone? What tips would you give to cope with loneliness and isolation?

April2018mom

Change your mindset. 

This is why we need to end social loneliness. Finding a group was crucial to my sanity. And yes online support groups make all the difference but aren't real life friends also important?

And that is not true. I read your post and I agree with you. Perhaps start small. Go to your local library and make small talk at parties. Enroll yourself on a adult learning course as well. We all need to combine forces to end social isolation. Can you afford carers or not? 

Maybe request a needs assessment from social services. What are your skills and hobbies? Apart from surfing the internet. 

LonelyT

Hi April2018mom,

Sadly with agoraphobia, it isn’t as simple as just ‘changing my mindset’ and popping to the library to make small talk. Some days pain and weakness from dermatomyositis make it near impossible for me to get out of bed, but even when my body allows, I can’t make it past the front door because of my mind.

I feel you may have missed the point of my post. Obviously, if I could change my disabilities I would. The point of my blog post wasn’t about finding a cure or a way to fix my disabilities, it was about the ensuing isolation and how I’ve found ways around it. I would go as far as to say that I am closer to some of the friends I have made online than I ever was with the people I knew in “real life”.

While on many levels I am lonely and I’m undeniably physically alone, I’ve beat isolation by finding like-minded people in a way that my disability has allowed. 

I think it’s very important not to discount the relationship and bonds people form online. For me it has saved my sanity and been a huge comfort.

thespiceman

Hello @LonelyT   Pleased to meet you . Sorry about comments @April2018mom Has no idea at allI apologise on the forums behalf.
I do understand every day what your are going through..
I am one of the team of community champions on this forum, use this every day see no one except the delivery drivers or parcel guys and girls.
Thanks to them a lot of support, compassion.
Never easy any  time we all been there.
Had friends, relationships, and it goes on. No one  thinks you going to be a lonely gent.
I have wonderful friends on here message and support me. We may never meet but my love for them and they love me is the reason I get up every morning.
Fine to watch television if that helps you. What does help me is find  suggestion for you is feelgood programmes on TV that you can learn educate yourself. Having a education or knowledge does not have to be going to college, look on line maybe . You can do a lot on line. Qualifications.
Gives you self esteem, confidence. Also working no needs for offices some jobs, roles are at home.
Must add the mental health issues you have I do believe can be helped if that is what you need. Small steps all the time, every day.
Use and think about how can I move forward,it is not changing the mind-set at all it is finding a balance a option to guide you to think how to cope.
Stones if we put them in the path do we stop or still or go around. The condition you have can be eased, need support with and a lot of patience, tolerance. I would add there are mental health charities this, one be useful.
https://www.richmondfellowship.org.uk.
Please if wish to have a friend need a some to listen to please think of me. Happy to be one.
One other thing on line and support whether shopping or services are a useful tool.
Open and honesty which you have done sharing your post. Probably helped more people to help themselves and think that is me, I am like that.
Nothing to be ashamed off. No one ever wishes to be lonely. I thought I was the only one hear you every day those say that.
Please take care of your self your important valued member of our community.
@thespiceman

LonelyT

Dear TheSpiceMan

There’s absolutely nothing to apologise for, we can’t all be well-versed in every condition and I think agoraphobia is very commonly misunderstood and does affect people differently. I’m positive April2018Mom meant no offence and I certainly didn’t take any.

It sounds like you’ve some experience with isolation too. Deliveries are definitely a highlight of my week, just to see a friendly face! I’m glad you’ve found an online group of people you care about too. It really can help make such a difference, can’t it?

I do find myself watching a lot of TV and love my soaps of an evening but I do watch other things too. I like getting inspired by cooking shows and am looking at starting a degree with the Open University next year which will be good. 

Thank you for the link, I’ll be sure to check it out. I have engaged with various therapies but my limited mobility combined with my mental health doesn’t make things easy. 

Thank you for your kind words. 

Ami2301

Hi @LonelyT and thank you for sharing with us. Reading your guest blog has bought back memories for me of when my health began deteriorating nearly 2 years ago. I became isolated as I lost my job, my friends, but it was Scope that changed everything for me in February of last year when I joined.

The community became a light at the end of a very dark tunnel. That was just the beginning of an amazing journey with them.

Social media has been my lifeline too, it enables me to keep in contact with the friends who have stuck by me, made new friends, offered amazing opportunities.

I really hope you stick around with us here on the community, we would love to get to know you more

thespiceman

Hello @LonelyT   Thank you kind warm words. Wanted to add all mental health charities include do except those with disabilities with mental health issues.
I use them for many reasons, lots of guidance, support.
Information, signposting. I do know accept and try to assist you with any mobility issues you have. Worth looking a these as well.

https://www.mind.org.uk.
https://www.rethink.org.
Might be not in all areas a lot of the charities, sorry to tell you.
Often useful as well any benefit issues could even look at your situation at home, consider other options. All these charities have well being, health and plans, strategies to make sure you can cope on your own.
Deal with your issues, some are offering this SKYPE communication software. Some like the one I went to offer you a laptop to communicate with.
You find many have a lot of knowledge and expertise.
I am aware of the situation you are experiencing, must add never easy. Been on my own a long time so long can not ever remember how, just know there are answers and solutions, trying to be strong have courage.
You like cooking good to hear I am one of the members of the community been called the Recipe King Community Chef, Italian Stallion of the Kitchen, easy now lol. Lots of my recipes on here plus other foodie stuff.
Happy to share.
Mentioned soaps do not watch because effects my mental health sorry to say too much depression, each to their own.
Find sunshine things on TV, find good feel good films the ones and lots of Strictly the sparkles helps. love my sparkles as I do say lol.
Good to know doing Open University wish you well on everything you do.
Please if I can help offer support please get in touch, please consider the links might be amazed what can happen.
Please take care.
@thespiceman

newborn

Do explain to the  ones who blocked you, with their  very kind  best intentions to consider  your feelings.   They could understand that  your pleasure is  vicarious.  It's  no different  to someone who used to play sport, but now enjoys  just watching. 

Once, I was talking to someone who went blind as a teenager.  I happened to mention a particular favourite sight (when you go down a country road in bright summer sunshine,  but the trees are overgrown so you are in a tunnel of dappled green)   She was thrilled, because she had forgotten that,  from childhood.  But she said  not many  people  described  visual  things to her.

 She assumed that they assumed there was no point, or maybe they  assumed it would tactlessly remind her she can't see any more.. It was a loss, because she could still remember enough to re-live having sight.

Probably lots on this site  have to just  make do with whatever they can do, so they know  there's no point minding about the things they cannot manage  any more, or never could. 

debbiedo49

LonelyT said:

Hi April2018mom,

Sadly with agoraphobia, it isn’t as simple as just ‘changing my mindset’ and popping to the library to make small talk. Some days pain and weakness from dermatomyositis make it near impossible for me to get out of bed, but even when my body allows, I can’t make it past the front door because of my mind.

I feel you may have missed the point of my post. Obviously, if I could change my disabilities I would. The point of my blog post wasn’t about finding a cure or a way to fix my disabilities, it was about the ensuing isolation and how I’ve found ways around it. I would go as far as to say that I am closer to some of the friends I have made online than I ever was with the people I knew in “real life”.

While on many levels I am lonely and I’m undeniably physically alone, I’ve beat isolation by finding like-minded people in a way that my disability has allowed. 

I think it’s very important not to discount the relationship and bonds people form online. For me it has saved my sanity and been a huge comfort.

I see where you are coming from, both of you. You are both correct in my opinion. Ps I'm a recovering agoraphobic with chronic illness too.

louise26

I dont have any friends in real life either so I use social networking sites to chat to people or try and make friends my best friends are on sites
 I find it hard to leave the house because I have been hurt in the past when i did... so I understand were you are coming from 

dark666moonlight

i found my online family online as my real family caused the disabilitities i have so disowned them

Chloe_Alumni

Thank you everyone for sharing, if there is anything else we can do to help the please do let you know.

meymay93

Thank you so much now I have friend to chat because I am home all time wait my daughter to do all I am all ways dark no light at all but now make friend thank you so much

Flic

I know this is an old post but it is how I found this forum. I wanted to say, if you're still around, that I hear you @LonelyT and thank you for being brave enough to be so open and let me feel a little less alone.