Article i found on loneliness and isolation.

[sylvi]

I found this article online and i found it so useful.

Being chronically ill is one of the most isolating experiences I’ve ever had. I feel alone in this battle constantly.

I’ve heard chronic illness equated to falling down the rabbit hole before, which I feel is an apt description. It turns your world upside-down. I often feel as if I live in The Matrix, or on some other plane of existence.

I just don’t understand people anymore. I feel so alone when I have to interact with almost anybody. They just have no idea what my reality is like and they don’t often come close to grasping it even when I explain. Our worlds overlap, we can see each other, even talk with each other, but it’s never really…right. It never clicks. Which isn’t their fault, because I don’t know that I could’ve really understood before becoming sick myself. But it doesn’t make it any less isolating for me.

I’m not a part of their world anymore, to incorporate some Disney movie magic, which I try to do as often as possible when I write and in daily life (“Part of Your World” is a song from The Little Mermaid). But in all seriousness, that’s how it feels. When I’m with healthy people, I’m constantly reminded of all the things I can’t do. My physical reality and theirs are two very different things. They have no notion of the pain I feel every minute of every day that causes the limitations I have that they also don’t understand. And words are just so lackluster when it comes to attempting to describe the horror of being sick every minute of your life.

And it’s not only isolating for me, the other people start to pull away and isolate themselves from me as well. I hear from people less and less, until they never contact me anymore. What am I supposed to do to prevent that?

It’s so difficult because none of it is my fault, either. I didn’t ask for this. It’s not my fault that they don’t understand more and I can’t explain in a better way to help. And I know it’s not their fault, either. Which is what makes it such a desolate situation. I truly believe there’s a fundamental gap in experience that can’t be closed even by the best of explanations; you have to experience the pain yourself, and you have to experience it non-stop, for years on end, to really “get it.”

[Sanbanan]

Well said Sylvi.

Beautiful picture too 😃 x

[sylvi in reply to Sanbanan]

Thank you my darling.xxxx

[jane1964]

Thank you for posting this.I found it really helpful.At least here we are never alone.Jane

[sylvi in reply to jane1964]

Glad it has helped. Our families need to see this.xxxxxx

[AgedCrone]

I feel very sorry for whoever wrote that. But if I had thought like that for 18 years I think I'd be completely friendless by now.i know a lot of it is true, but ........

When I was in the wilderness of first being diagnosed ..in a lot of pain& frightened, I was completely alone & bewildered by it all, but either I am completely insensitive or stupid, but I WILL NOT let this disease win.....I WILL lead as normal a life as possible.

When I have bad times I do retreat from socialising& look after me......real friends understand & are still with me. Those that didn't understand just drag you down......so no loss.

I'm sure everyone in this site has had some of the feelings of the writer....but sorry if this upsets everyone's...get over it. Of course we all go through periods of despair, RD is a nightmare.....but we usually wake from a nightmare don't we?

So by all means read the article....but don't let it start to define you........don't lose the hope that you will feel better.

[sylvi in reply to AgedCrone]

It is an article that was written to cover a lot of things and not just for one thing. I have found the article to be constructive as we can all say we have had some of those feelings from time to time. I do my best not to let RA and its friends from defining me,but even i do sometimes feel lonely. If it wasn't for my friends on here and on facebook i would never talk to anyone. I have made some great friends on the laptop and met a lot of them as well and they all buck me up when i need it. Not everyone is that strong and i am afraid this disease is horrid in the way it affects other people.xxxx

[AgedCrone in reply to sylvi]

Yes I understand what you are saying Sylvi,& I am sure you can imagine how I felt being single & after my life of flying around the world for a living not even being able to walk up stairs ...but when I realised how the outside world treated me when I spent my life contemplating my navel I had to ,pull myself together, pain or no pain & decide ....was I going to give in & be a lonely old woman for the rest if my life, or was I going to find a way of enjoying life to the full as well as I could & the hell with what RA was trying to do to me.

I chose the latter. Some might not be able to do that.

But if anyone is feeling so destroyed psychlogically by their initial diagnosis ...please don't hesitate to seek some sort of counselling.....even accept taking anti depressants...but don't just huddle in your shell & think your life is over....it isn't......& as my Grandmother always told me.....there is always somebody worse off than you.

Hope everyone takes these words if of ?Wisdom? In the way I intend ....no criticism intended ....it's just the way I cope.

[Neonkittie17 in reply to sylvi]

Perhaps we need to make friend networks so we can meet in nearby areas to ourselves. 💕

I've had to distance myself from several people including a couple of family members who have made me feel bad and always highlighted that I couldn't do what I used to. Recently an ex neighbour was cruel about two of my fingers having osteo. It's ignorance mainly but there's no control on their mouthpieces at times. Sad really as I do more than they do most days .. but no I don't walk up mountains every Sunday anymore but I can do a fair few hills when I put my mind to it. I don't expect anyone to make special allowances for me but when they sniff because I don't want to get drunk then not interested. I've not grown two heads since I got RA and I'm an upbeat and supportive of people and never lost my sense of humour (apart form with my awful SIL recently who plagued me for two years whilst trying to sell my late Mum's house and SIL is a head case) so I don't know what their problem is and I have to say I was sad at first but don't care now. Those who are unkind aren't worth wanting to be with. Hugs to you AC and to Sylvi and hope you are feeling a lot better. xxxxx

[3LittleBirds2 in reply to AgedCrone]

Hello, I see this from both sides we all have those days when we can sit and wallow feeling sorry for ourselves. There’s a lot of people a lot worse off than us, yes it’s hard, painful and an extremely misunderstood disease, but those days when you force yourself to go out often turn out that you’re glad that you did! I know people look at me disapprovingly when I use my blue badge but that’s their problem not mine. I was really pleased as odd as it may seem by a sign on a disabled toilet door recently saying “not all disabilities are visible” which says it all really. Thank you for posting this Slyvi and to AC for saying what a lot of us are probably thinking!

[AgedCrone in reply to 3LittleBirds2]

I can only comment on how I cope....some days I'm the irritating little miss sunshine, others I just about get through the day.

I think everyone has their own way!

[DC56]

I found when people ask how are you I answer I’m fine there no point in explaining anymore ,so I feel I know what you mean it feels like I’m lying to myself now , as you just carry on do what you can and leave what you can’t it makes you feel sad realising this , oh well I hope you feel a bit more like yourself to day Sylvi keep you chin up , give your husband my love , love Dawn 🌺🌺🦋🦋🦋

[keeta]

You are such a lovely person sylvi.give yourself a big hug from me .💞

[sylvi in reply to keeta]

Thank you darling i can feel the hug as i am typing.xxxxx

[Neonkittie17 in reply to sylvi]

More hugs from me too! xxxx

[MagicalMarjieXx]

I tottally get the article but after years of living with RA When anyone asks me if Im okay I just smile and say Yes Im zipperdydoodah! Because if Im bored with hearing me moan about how I feel, then I suspect that eveyone else is , thats because unless you have it you really dont understand what we go through. I like to think we are All lifes Warriors and together we will overcome and adapt And hopefully one day they will find a cure ... Peace out Warrior Brothers & Sisters Xx

[sylvi in reply to MagicalMarjieXx]

Yes darling we are all warriors and we will never give in no matter what life throws at us. The article is very well written and i wish i could write like that. There are a lot of parts in that that i can resonate with.xxx

[Hidden]

I think this disease does come with loss and not to acknowledge that is a bit delusional. I think we all have to mourn at times for what we are no longer able to do with ease. It does not mean that we have to stay there and we do not get back up again the next day and do what we can sometimes with a smile and sometimes with gritted teeth.

[sylvi in reply to Hidden]

Well said darling.xxxx

[AgedCrone]

Make you smile Sylvi..I hope..I got up early & went back to bed with my tea & Marmite Toast...Yummy,

But I somehow must have got Marmite on my PJ's (?)

I amjust turning on the WM to wash it off not only Pj's, but the sheets and the pillowcases....worst job ever changing my bed linen too!

I do know RA makes me clumsy.....but this is ridiculous!

Wish you better soon!

AC

[sylvi in reply to AgedCrone]

I get clumsy as well everything goes through my fingers, Also i shake for some unknown reason. sorry shouldn't laugh.xxxxx

[cyprusmum]

Interesting and sad.

Sure it shouldn't define you and we all get good and bad and in between days.

People in general don't think that because we are walking about etc we might be in pain or moving slower.

Nit being able to drink is just a little part if that lady's problem. Plenty of people can't drink for a variety of reasons and may just not like to.

I hope she's found some peace.