Struggling with disability and feelings of bitterness. Can anyone relate?

[Paperchase283]

I've had a chronic disease for over 20 years now. I've never been resentful of it, just accepted that this is the hand I've been dealt and got on with my life to the best of my capabilities.

I'm now 40 and life is really tough, I'm struggling with the condition on a daily basis and I feel really quite bitter towards my friends. I try and stay away from social media as much as possible but when I do go on all I see is people out and about, making up for lost time after covid, 'making memories', just enjoying life while I'm stuck at home. I've got no life outside of work and the home. DH and I never get to go out together anymore. He's absolutely wonderful and supportive but he must feel limited by my condition as much as I am. Thankfully DS is now a teenager so he's not reliant on me for his social life any more and when he was younger I was able to do much more with him.

I dont want to turn into a bitter old woman but I seriously feel like shouting at all these smug friends to go fuck themselves! They have no idea how lucky they are and I know that SM is just a screen shot of people's lives but anything is better than nothing and I'm just nothing.

There was so much during lockdown about how it was affecting everyone's lives, how difficult it was, what an awful time everyone was having. My life barely changed. Now everyone's out living it up whilst I'm still stuck at home. It's brutal and no one cares.

I'm aware I sound like a horrible person. I didn't used to be and I keep it all hidden in real life.
I just needed somewhere to offload. Thanks for reading.

Stop looking at the bits you've picked on SM. The envy stuff ain't good for anybody, as you've now found out.

Use SM to help, not harm, yourself - disability forums are brilliant imho., as are the educational courses and the hobby content. You can access counselling at the touch of a button, so try that.

I completely get how exasperating and demoralising illness is, and how sometimes one does feel completely pissed off with the world. Those feelings are healthy :) But it sounds like you deserve something nicer in life than silly FB show-offs and, as a favour to yourself, I suggest you go off and find it.

I can totally understand why you feel the way you do and don’t think it’s unreasonable. I don’t have experience of chronic pain/disease but my DS has a disability that is lifelong and is limited to what he/we can do and we have a lot of future challenges to overcome. So I have similar feelings when I see people posting what their kids and families are up to knowing we are missing out on the same, and how easy it is for them to get out and do these things.

I know it’s not anyone’s fault and you wouldn’t wish it on them either. But it’s an ‘in the face’ reminder of what shit cards we’ve been dealt and how different life could have been.

I don’t generally feel angry, usually very sad. I just know when I’m in that mindset I need to try and avoid social media or mute certain people for a while. What does bother me are closer friends who are sometimes a bit insensitive about what they send to me directly and rarely acknowledge or ask anything about my DS disability either. Or even ask a simple ‘no really, how ARE you’. I don’t think people truly understand when something is for life and doesn’t just go away or that you don’t just get over it as time goes on. It’s here to stay. Especially when you have to continue facing various challenges with the system to get support you need or multiple ongoing appointments to attend.

But I also struggle opening up and talking about how I really feel so I also blame myself if I haven’t made my friends aware how I feel and how sometimes I feel hurt. I am having counselling though. Disability grief is real but not talked about much. I know that’s ultimately the root cause to my down days.

Paperchase283

Lovinghannah thankyou.

MrsSkylerWhite I know people are telling me it's unreasonable to feel angry towards others but I actually think that any other human would eventually have those same feelings in these circumstances because I used to be a very kind, rational, happy person. So maybe being unreasonable is actually pretty damn reasonable in my situation. It changes you as person.”

My husband lives with chronic pain and I can honestly say I’ve not heard him saying anything hinting at resentment towards other people who don’t in over 33 years. Everyone is different I guess.

Yes I totally relate. Similar age and length of disability and chronic illness. Always been plucky well make best of it type. But do find myself getting moody and jealous of others people’s lives chances and ability to do things with easy. More so last summer when everyone and their dog has gone on holidays and realise just how much my Normal everyday differs in every way.

Press send to early.. for me
It is bitterness creeps in because I’m single and can’t improve my situation. Even comparing my life with those who lucky enough met partner before become ill I’m
Jealous. Just simple having partner who could run a car would make massive difference. Can’t go anywhere or do anything. Yes I claim all I can but time I pay social care costs left very little to pay very basics of running a home.

For me that’s biggest jealous, same
Person same Disability have private money make hell lot difference compared living on bare bones. Think just have ride it out for however many months it’s going really hurt for.

@Paperchase283
I totally get where you're at. Chronic pain issues have left me virtually housebound Retirement wasn't supposed to be like this. A proposed knee operation has been delayed nearly 2 yrs and now the other knee and hip are going the same way. Washing up is a 3 act play- run water, wash up plates - sit down. Dry plates, wash up next batch - sit down. Dry second batch - sit down. Wash tins etc - sit down. Wipe tins around and put away. Sit down. Empty washing up bowl and wipe around. Sit down. It would have taken 5 mins previously. Now it takes nearly an hour. As for hoovering? Forget it. Mine has a foot pedal for tipping it down to use. I have to hang onto a door so I don't fall over! Gardening.... And so it goes on. What makes me unreasonably ..........angry ?(no not really) disappointed definitely is that a relative had had TWO knee replacements while I can't have 1 (co morbidities mean I need a HP bed and our local hospital has suspended elective surgery) I can hardly bear to speak to her and yet I know that's not reasonable. Just wanted to rail at the injustice of it really.

I understand. My disability isn't seen as as a disability by most, when i say arthritis the answer is usually surprise, I didn't know you were that old? No rheumatoid arthritis can affect anyone at any age. Or the response of my mum/sibling/best friend has it in their little finger, it's really sore for them, and I want to say thanks but it isn't the same, this is my entire body every day! Not the same.

I've given up trying to get my family to understand that every day is different, I can't just make plans. It's very frustrating to hear oh you were fine last week, so why can't you do things this week. Well this week I'm having a massive flare up and can't move my limbs! I also need time to get ready, and it's hard to make them see that for someone with limited and painful movement the getting ready is just as big a deal as the actual doing stuff. Just getting into the shower is an endeavor, as it's over a bath, and over 50% of my days I literally can't get in it. They've thankfully stopped handing me stuff, for the most part, as I can't grip or hold most things. Hand me a cup of water, I'll be in pain from trying to grip and I'll drop it from just not having strength.

I don't use social media so i avoid all the days out pictures and stuff. Life is very lonely.

Business near me explained a couple of years ago that they couldn't afford a small ramp for £3,000 into their shop. A friend was there recently and told that that had spent £10,000 on a refit "since we had to make it Covid safe anyway".

Still no ramp.

I guess I can relate too.

Hi OP,

I too have a chronic condition - it was lying dormant for years but the stress of separating from my husband and him cheating on me etc triggered it off to epic proportions. I’ve lost count of my admissions to hospital for pain management ( I have a protocol ) although at the moment, a new medication switch has helped keep me out for 4 months so far. Although I do have to rest a lot and bad flares put me in bed for days. I get what you’re saying - I miss the old me and my old life. Some mates can’t cope with it ( one accused me of attention seeking ) but thankfully I have other friends who are supportive.

But I see no one, barely go anywhere and had to give up work as it’s unfair to expect others to cover me constantly. A decade long career gone… I’m 37 with a DS to look after by myself but tbf my mum and DP help. But that thing of life passing you by is very real. I’m gutted I can’t go out and socialise and even just goi g out for brief stints leaves me exhausted and stressed. So I just don’t most of the time.

It’s a shit lot and as much as we try to be stoic sometimes a rant can actually help - like some days I’m very angry. Not at people but my condition and I try and rebel against it by going out or pushing myself too hard physically. It’s has a massive effect on my mental health too so I hear you when you say you’re fed up.

I lost fifty years of my life to a major illness that was misdiagnosed and dangerously wrongly treated, then, when the right diagnosis was finally made, ignored. Now I am nearly eighty. But so relieved to be alive and to know the truth.
I live very quietly and peacefully and this forum is the nearest Iwill get to social media. We were taught to t keep our eyes on our own page an it is good advice.
I have CFS/ME and am very very limited in my old age. But there are still joys and small happinesses.
And I am very very glad that they are researching into ad paying heed to Long Covid. I left a CFS /ME forum over the bitter attitude expressed earlier here. Apart from the fact that it will rebound and spread and help us. what matters is that Long Covid sufferers get help and are not left as we were,
I think we have conversed on that forum... lol... And I said the same then. Long Covid after covid is a scourge. A terrible thing. The only possible good is that it might bring more research and help

The daughter of a dear friend has Long Covid.She is a Senior Nurse Practitioner and a truly lovely person, unable to work full time still .I was glad and honoured I could offer some understanding and advice and above all real sympathy.

We can and do choose where we look; like the old words spoken about POW prisoners.. Two men looking through prison bars.. One saw the mud, the other the stars. I choose the stars. Every time

Please. look away from social media? You are worth far far more than that... And the only person being hurt by dwelling on it ?
This evening , please do something YOU really enjoy? Be kind to YOU. Look away from what others are doing. Live YOUR life.
I am about to close down as like you I am in hard and constant pain and need to take pain relief and sleep. But my eyes will gaze first on the few wildflowers I gathered in earlier. Small beauties..

For the only unhappiness that comes of being bitter is to ourselves?

My ed gets really jealous when she watches the athletes at the paralympics as she has a chronic pain condition that means she can't do any of the sports she would love to do, even if they could be done in a wheelchair, as it would just hurt her too much. She gets angry at people who could do things but don't as she would live to be able to just go out on her own, maybe on a train to the seaside or something. She knows she is being jealous feeling this way, and it does pass, but every now and then she has a real down time about it all.

Nothing helpful to add, just to say that it seems monumentally unfair that you're deemed "fit to work"- if you are incapable of having anything else in your life other than work then you're not exactly fit to work are you?! There should be more to life than dragging yourself into work.

In that vein, are there any other adjustments your employer could be making to help you conserve energy/manage pain whilst at work?

Yes, struggling with a long term condition here too and similarly my life changed very little during lockdown.

I've never used things like Facebook so don't see all those posts... I do think I'd feel worse if I did.

I have found that my friendships have changed. Fewer, but better quality.

Counselling helped.

Like @BroccoliSprout I was left with serious ongoing injuries and scars from an accident (I say accident, but it was someone elses fault) a decade ago. I try and be positive and not complain about it, but it does get me down and I feel a shadow of my former self.
I also am very jealous of people whose bodies work - I'd love to run and jump and dance again.

DH has a life limiting condition. He was happier during lockdown because we were at home, everyone was having a quiet life like he has to have.

OP, I don’t imagine the contrast helps. There was a time when you weren’t missing out on much and now…it really reminds you of what you’re missing.

It sucks. It really does.

I know exactly how you feel. I felt when lockdown hit "welcome to my world" and then felt mean. I'm resigned to it all.

@PearlclutchersInc

I know exactly how you feel. I felt when lockdown hit "welcome to my world" and then felt mean. I'm resigned to it all.

It's not mean.

It's actually worse those who spent lockdown moaning about how awful it was without actually recognising that that is some peoples lives daily for decades.

It is difficult
I have MS. It's now limiting my mobility. I'm also immunosuppressed from treatment so everything is tricky. I hate that my poor dc have to put up with being so limited by all the things I can't do.

I do think SM is awful for this. I have a pretty lucky life bar a few issues, and even so SM makes me feel envious or a failure by comparison. I stay off it as it always makes me feel worse. I do understand not wanting to come off SM altogether though especially if you are limited in your ability to socialise face to face. Could you just use WhatsApp/text and ditch facebook/instagram (aka boasting sites)?

Focus on what you can do and divide the list into things you can do right now, and things you can do later with help (and detail the exact form of help you need). This is the way one of my friends has managed to survive - not going to go into details but she had something horrible done to her as a child and it caused severe injuries and constant pain. Every day is a struggle but these lists give her something to look forward to and sometimes even help put things into perspective.

@minipie

I do think SM is awful for this. I have a pretty lucky life bar a few issues, and even so SM makes me feel envious or a failure by comparison. I stay off it as it always makes me feel worse. I do understand not wanting to come off SM altogether though especially if you are limited in your ability to socialise face to face. Could you just use WhatsApp/text and ditch facebook/instagram (aka boasting sites)?

I guess it depends who you follow and how you use it. SM can be an amazing tool for disabled people to get support and just find and socialise with people with the same disability, or find role models. But yes it can be a real shitbag too.

Yes that’s true Ozanj - I took it from the OP that she is looking at posts from people who don’t have any similar health issues. So maybe it’s more about how to use it rather than not to use it.

I hear you. Physically disabled since a toddler and in my 30's now with chronic pain/CFS every day. It can really suck sometimes and no judgement at all from this end, I'm sending you hugs.

And you don't sound horrid. It's natural to feel the way you do - especially when everyone has talked about how hard life has been whilst we were all limited without a second thought for those who live that life daily and any empathy about that "difficulty" is a daily reality for many.

Exactly. It's not about wishing suffering on people with long covid or who struggled with lockdowns, what is enraging is the complete lack of empathy and insight from people choosing to give media interviews complaining about how awful it is not to be able to work and how distressing it is and calling for empathy and consideration for them. Without a moment's recognition that they are not the first people to be consigned to the dustbin when unable to work due to illness or disability.

Same as it was infuriating that the majority of the population were happy for SSP to be shit and UC to be too little to live on - until it affected them. And then suddenly it was unacceptable.

There's nothing wrong with experiencing anger or using frustration about the hypocrisy and selfishness that has been displayed on such a huge scale as fuel to push for changes for those left behind and forgotten. The only time anger is a bad thing is if you use it to hurt people. Nobody here is doing that.

Just because "choosing" to look at the stars is effective for one person doesn't mean it's effective for everyone. Humans are not simplistic clones and nobody deserves to be judged or condemned because one person's successful strategy is not effective for them in their life.

OP about 9 years ago I could have written your post. Had chronic disabling illness for most of my life and finally on the employment scrapheap in my early 40s.

On some days feel like I have made peace with my life and on others I am still raging against everything I can't do, so empathise completely.

My DC are now teenagers so thankfully much more independent and I don't feel nearly as guilty as I used to do about not being able to do what I wanted with them and them missing out on things that others took for granted. I have memories of them around 7-8 years old being embarrassed about me in my mobility scooter when I first started having to use it and it made me feel awful but now they are such compassionate young people and have awareness of disability that many of their friends lack.

The things that have helped me are to focus on the small, and I mean small, things that I CAN do rather than the hundreds of things that I can't. Some days it's easier said than done and I am trying to knit a sweater that will probably take 10 years to finish because my hands and wrists can't cope and I have to give up after 5 minutes .

As many pps have said, lockdown for me was normal life which made me realise how small my world really is. I rarely went out and going on holiday is exhausting and requires such planning.

Not sure I have the answer really. I like watching nature in the garden but can't go for a walk so miss so much.

I love music and reading and can lose myself in these given half a chance. Some days I have to resign myself to sitting on the sofa all day and watching endless reruns on ITV3. Always cheers me up when the adverts are either life insurance, funeral plans or mobility aids .

There's no denying that it sucks but I suppose what I have learned is that being angry is a waste of the little energy that I have and is a road to nowhere. Fairly obvious I guess and easier said than done.

Also don't think that it's unusual to want to tell others to F off when they mention an ache or pain and have no idea what you deal with every day.

I have developed a rich inner fantasy life which I suppose is just day dreaming and would probably sound really pathetic if I told anyone in real life about it but whatever gets you through as they say.

I have been musing lately on how it would have been to have my life again but with good health and ability. I guess I'll never know but I wouldn't be where I am now and I am lucky in having a wonderful DH and children so in that respect I am luckier than some.

Be kind to yourself . Think it was Oscar Wilde who said "we're all in the gutter but some of us are looking at the stars" and I've probably misinterpreted it but to me it means we can still find joy in the world around us even if it's not how we would have wanted to.