Does anyone else living a life of permanent restrictions feel frustrated with people complaining?

[Highlanders372]

I've had crohns disease since I was 16. I'm now mid 40's. It's affected my education, employment, my home life, my social life. Every single aspect of being a human. My ability to function on every level. The lockdowns meant nothing to me, I've spent 30 years living a life of lockdowns. No one other than my parents and my DH have ever given a fuck about me. My friends all disappeared, my employers have been bastards, society doesn't care.

All I hear about now is how hard life is for everyone, the uncertainty, the restrictions, the financial worry, the disability caused by long covid. Poor people not being able to go to the theatre or out for their Christmas parties. I've not been able to go to the cinema or theatre since 2002. I've not attended a Christmas party since my teens. Despite all this I'm also not entitled to a bean of support of the government.

The only positive is that its made me realised how fuckiny strong I must be to have done this for 30 years when people are crumbling after 2. I hope when all this is over society might be a little kinder and more understanding to those of us living with chronic disease but it won't, everything/everyone will move on a we'll all be forgotten about again.

I just want the world to wake up after all this and help those of us who live like this all the time. The last 2 years the world became more accessible to me that its ever been but it will all revert back to 'normal' eventually and we'll be forgotten about again.

Comments like this annoys me. People who have to live like OP isn't necessarily strong. They have no other choice. The comment is very insensitive, imo

OP said that they are strong. It is in the last paragraph.

Just as an example, one of many I could tell. I had a friend, at least I thought she was a friend. I socialised when I could and was always very apologetic when I couldn't. One year she just turned on me. I was upsetting her because I was constantly having to cancel on her at the last minute, she was feeling very let down and disappointed by me, the friendship obviously didn't mean that much to me if I was going to let her down like that. I apologised, tried to explain. She said she understood but clearly didn't. It was all about her disappointed, she couldn't see that I was the one in pain, missing out, feeling guilty at letting people down. I see on social media how hard the last 2 years have been for her, how isolated she feels, how much she misses her social life. Will she now understand how I might have felt over the years? I truly hope so now that she's had a very small taste of it.

Another example. My gcses. Top set in everything, bags of potential then I became seriously ill practically over night. Missed so much school and couldn't keep up. Where was the support? The work sent home? The teacher to check in on me? Nothing, fuck all. People are absolutely right to be concerned about the impact of homeschooling on children during the pandemic but what about all the kids who are always missing out on their education due to health problems? I hope the systems better now than it was 30 years ago.

XenoBitch it's true though that you're only strong because there is no alternative. Well there is an alternative, you could kill yourself so that's your choice, you keep on fighting or you give up.

@Highlanders372 minorities are forgotten because it’s just not relatable to the majority. You might be in the minority but don’t lose your voice. If you have experienced complaining and it frustrates you why shouldn’t you say so. That’s your experience.

I can see where you’re coming from OP.

I’m finding it really hard to put into words how I feel about it. I have chronic illnesses that include a breathing problem.

I many ways lockdown has really helped me. In some ways it has allowed me to feel less disabled.

I can work from home which means my breathing isn’t as irritated by pollution it exertion. I also don’t have to carry bags around.

It’s more acceptable to cancel things last minute.

I’m not asked out on big all day shopping trips that I wouldn’t be able to handle.

God if I was a uni student now with home learning life would be so much easier. I was bed bound for a good 30% of my time at uni.

@Highlanders372

Just as an example, one of many I could tell. I had a friend, at least I thought she was a friend. I socialised when I could and was always very apologetic when I couldn't. One year she just turned on me. I was upsetting her because I was constantly having to cancel on her at the last minute, she was feeling very let down and disappointed by me, the friendship obviously didn't mean that much to me if I was going to let her down like that. I apologised, tried to explain. She said she understood but clearly didn't. It was all about her disappointed, she couldn't see that I was the one in pain, missing out, feeling guilty at letting people down. I see on social media how hard the last 2 years have been for her, how isolated she feels, how much she misses her social life. Will she now understand how I might have felt over the years? I truly hope so now that she's had a very small taste of it.

Another example. My gcses. Top set in everything, bags of potential then I became seriously ill practically over night. Missed so much school and couldn't keep up. Where was the support? The work sent home? The teacher to check in on me? Nothing, fuck all. People are absolutely right to be concerned about the impact of homeschooling on children during the pandemic but what about all the kids who are always missing out on their education due to health problems? I hope the systems better now than it was 30 years ago.

So sorry life is so difficult for you Sadly, most people will not understand it unless they experienced it And no, I don't mean going through the restrictions of the last 2 years. As there is hope that the situation will improve and it won't last forever. But your illness is with you for life I am so sorry

I understand why you are jaded at people who can't even empathise with your situation but some things just go over people's hands.

You are unreasonable to hope covid effectively gives them a reality check from also missing out on things.

Noone's pain or suffering is any less important or valid than another's. It's pretty sad OP that you have become so bitter that you don't acknowledge other people's suffering or loss but still expect them to empathise with your own.

@PinkPlantCase you make a good point. A lot of lives could be made so much easier with proper adjustments in education and the workplace. Furlough and catch up education, for example, has been implemented for Covid because it affects the majority and rightly so.

Imagine if after Covid, when hopefully the majority are back on their feet, the energy, urgency and funding was directed at the disabled population. That would be a wonderful thing.

I know what you mean OP.

It's hard, and sometimes quite annoying to hear about people complaining about not being able to go on their holidays & have family get togethers & how there aren't all the usual foods in the shops as normal & they can't eat what they wanted to, & I think, welcome to my life. But OTOH I've had a couple of decades to get used to it (albeit with inadequate support) so it's normal now so I have to consciously remember that most people are really struggling with this, they've just not managed to develop coping strategies yet. And the world isn't set up for so many thousands of people suddenly becoming severely ill & unable to work, even temporarily.

When people are suddenly faced by restrictions - whether due to a disabling accident, a serious illness or the rules around Covid - it takes a while to adjust.

During that adjustment, some people will really struggle, and possibly complain.

People are in an adjustment stage with Covid. We don't know yet how bad it will be in future, how long it will go on for. So of course there is some whinging and moaning going on.

Some of the whingers and moaners will never have given a shit for people with disabilities and long-term health conditions, but others will have done. And we are all allowed to complain.

OP, you say you have Crohns & a lifetime of lockdown. Can I ask why? I mean that in the kindest way. My best friend since I was in high school has crohns & while there have certainly been large chunks of her life where she’s been debilitated by it during flare ups. she also leads a quite full life while it is in remission which it tends to be for reasonable chunks of time. She works full time as a Marketing Director. She is married & wad lucky to have a little one during remission. She came on some holidays with our friendship group when we were younger. These days we tend to just do a spa break now & again & catch up once a month over dinner. And we talk daily of course.

It’s so sad to hear you feel so isolated when I know it doesn’t have to be that way. I’d support my friend through anything. It doesn’t matter to me if we don’t see each other for 6 months, we natter constantly on WhatsApp or FaceTime! I don’t claim to fully understand the disease at all but I know enough to be supportive & hopefully helpful! Coincidentally my manager at work has Colitis so I hear a lot about IBD.

My friend is part of an active IBD support group that’s local (kinda, covers all of our part of Yorkshire). She has made some great friends through there. Is anything similar you could join remotely at first?

Exactly Grumpy we are all allowed to complain. It’s good to talk. So crack on OP you are part of the all.

RedDingDongMerrily it would be amazing.

Thanks everyone who has been so understanding. I know I might come across as unreasonable and jaded unfortunately that's what happens when you're badly treated for so long, I wasn't born this way. I hope that once I'm retired and out of this rat race I'll find some peace in my simple life but at the moment, when I battling pay check to pay check, life just feels like a massive fight and I can't find any contentment.

That sounds awfully tough. You got an illness, when your life should have been taking off. I understand exactly what you’re saying. Sadly I don’t see things changing drastically or people being kinder to those with permanent illness or disability.

I feel like this in relation to ME/CFS. This is predominately a chronic illness post viral infection and women, who have it have been ridiculed for decades. Yet all of a sudden a post viral infection in the form of long covid is suddenly believed and high priority for research and funding…

It’s like a (relative) few outliers don’t matter… especially when the majority are women.

I was speaking to someone a few weeks ago, who is very fit and healthy and was worrying about coping (with kids older primary / secondary) when their partner was out for the count for a week and not well for another 2 due to covid. Not hospitalised or anything. I just smiled and thought back to when dh wanted to give up work to become my long term carer a few years ago as I was so very ill. I’ve had some major surgeries since then and am a fair amount better, not well enough to work for example.

Many people truly live in a bubble. Very very few friends really understand. When I’m feeling better I still struggle to see how ill I was so I totally see how hard it must be for others to get it. - but add the caveat of especially if you don’t want to as you view the world differently.

People ask how I am. The answer is pretty much always the same. Not too bad. Basically if I were that bad, I’d be in bed and they’d not be seeing me at all. And even then I’ll go home and crawl into bed every day for a long daytime rest and mostly sit on the sofa for the rest of it… this is my not too bad. And my not too bad would be most people’s very ill.

I get where you're coming from OP.

Having spoken to people who really have been through tough times over the last 18 months, it's rather jarring to see on here time and again "well let the vulnerable shield if they want to, I'm getting on with my life" and "I'm through with all this", "I won't lockdown/wear a mask/do anything different" etc.
I think most people have found it difficult in a lot of ways. However some people have had it tougher. Those are the people I see getting on quietly, not the people complaining about it.

I've helped manned a helpline over the last 18 months. I've spoken to people who haven't spoken to another adult for over 6 months, I've spoken to people who have two slices of bread left and don't know if they'll get more food in the next week, people who have taken on full time caring to protect loved ones, people whose spouse/child/sibling is dying in hospital and they can't see them, people whose electricity ran out last week and they can't get it topped up... I've spoken to people on my mobile while calling 999 on my landline, people who have illnesses that aren't fatal, but know catching covid could well be.

And then there's people on here complaining because they are asked to wear a mask to protect others.
They haven't got a clue about how some people have been left to struggle, or how people struggle in normal times.

I used to think the average person was fundamentally good and would look out for these vulnerable in society. What I've seen on here says that more people than I would have believed don't care enough to make even small changes to protect others. Sad really.

I was thinking about this the other day and whether people whinged like this during the wars? It is hard to listen to at times and for some people any restriction is treated like the end of the world. I nursed a dying relative through the first lock down and was told by a friend that 'every one is having a hard time' as if watching a loved one die without most of the support they should have had was the same as not being able to go to the pictures or for a coffee.

Oh i so agree with you @Highlanders372.

I have ME/CFS and my life did not change one but when lockdown arrived. If we had another one, it still wouldn’t change my life at all.
And yet people complain, it’s so hard etc… whilst looking at people with my illness and saying they are just lazy and if they wanted, they could just do more. Yay because we all like living in a permanent lockdown …

Same with long covid. Plenty of people saying how hard it is, how hard it is to recover from covid etc… it had taken them months! When what they have is basically the same symptoms than ME/CFS.
Amd yes it’s shit. But the difference is that they have access to long covid clinics, they get support form people , acknowledgements whereas people with ME get … fuck all. Instead it takes them years to be diagnosed, they get given ADs instead ‘because it’s clearly all in their heads’ etc…
The best was reading GPs saying they actually now realise that maybe they have treated their ME patients quite badly seeing how much long covid patients at struggling Yep that will be us tha have been dismissed again and again.

It’s crap.

And tbh I don’t think people will have realised. They will still think it’s different for them.

Bobholll IBD is a very broad spectrum and unfortunately for me I've never achieved remission despite them throwing every available drug at it. I'm pleased for your friend, it sounds like she's done really well managing it, I hope it continues for her.

@Grumpyosaurus

When people are suddenly faced by restrictions - whether due to a disabling accident, a serious illness or the rules around Covid - it takes a while to adjust.

During that adjustment, some people will really struggle, and possibly complain.

People are in an adjustment stage with Covid. We don't know yet how bad it will be in future, how long it will go on for. So of course there is some whinging and moaning going on.

Some of the whingers and moaners will never have given a shit for people with disabilities and long-term health conditions, but others will have done. And we are all allowed to complain.

Yes, this. There was hardly any adjustment with the Covid restrictions It was overnight.. you must stay at home. Life may have been no different for some, but for others the things that kept them well were made illegal. It was jarring to see people say stuff like "welcome to my world". It actually pissed me off. It was never illegal for them to leave their house.

But like I said in a pp, it is not a competition. I would rather people complain, rant and rave or scream into the night, than keep it to themselves. The quiet ones are the people you need to worry about.

As harsh as it sounds the reason you are living with restrictions is because you have a health condition, that’s unfair and unfortunate but to expect perfectly healthy people to have restrictions on their lives indefinitely just because you do is a selfish attitude to have. Of cause people who are perfectly healthy find being restricted for 2 years hard because our very nature means we put the needs of ourselves and our families above the needs of strangers who might happen to be vulnerable that is just human nature.

I’m not necessarily saying you are this way OP but I think there has been a hell of a lot of glee from vulnerable people and people with very little in the way of social lives who seem somewhat happy that now everyone else is having to endure that kind of life and that’s a disgusting attitude to have.

@Wheresmywoolyjumpers

I was thinking about this the other day and whether people whinged like this during the wars? It is hard to listen to at times and for some people any restriction is treated like the end of the world. I nursed a dying relative through the first lock down and was told by a friend that 'every one is having a hard time' as if watching a loved one die without most of the support they should have had was the same as not being able to go to the pictures or for a coffee.

No one was confined to their home or banned from seeing family during the war. Apples and oranges.

Thankyou for all the kind, understanding replies. They've actually helped a lot and I'm sorry to all those posters who understand how I feel because they're going through it themselves.

MargaretThursday thankyou for helping, I wish there were more of you in the world!

@Wheresmywoolyjumpers and that is why I don’t like the ‘it’s not a race to the bottom’ trope that often pops up when minority groups are feeling marginalised or different for not being part of group experience.

Covid is a new experience for everyone and I can see how digesting the shift of mood in the general population is a thought provoking exercise for disabled people. It’s not unreasonable to feel frustrated.

Katie517 you don't understand and that's OK, lots of people don't.