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.

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.

And UC got an £80pm uplift during the pandemic. But now it’s ‘over’ it’s being taken away and the rest of us on it before and afterwards, struggling for other reasons but more long term than a pandemic, have to manage without it again.

I just wanted to say thankyou for all the replies. I've read and reflected on them all. Sorry to all those feeling the same as me

I have a hidden disability and so many people just don’t ‘get it’ I get PIP for it so it’s definitely legit 😂 I’ve been called a freak and called out for using my blue badge because I don’t look disabled. I feel resentful too and definitely get it.

I just took ds to his swim training.

The leisure centre is having an uplift and all but 4 disabled spaces are out of use due to Harris fencing.

The 4 remaining spaces were all occupied with people waiting for their children to come out of an activity. No badges. Just conveniently placed for them.

People really don't think of the inconvenience disability brings.

Op can I join you in just shouting a massive fuck off to them all...it is really crap dealing with chronic illness and disability. I'm only 42 but having a toddler now just makes the whole thing worse.
Just sending many hugs and

@Paperchase283 - just wanted to check how you were doing today?

I think my post might have come across as a bit smug, as though I had found some inner zen, but I had a really crap night with pain and I was just ever bit as angry and bitter as you describe when I was still unable to sleep at 2am despite having dosed myself up. It also occurred to me that my condition is only going to get worse as I age so effectively this is as good as it gets - and it ain't very good .

Anyway the sun is shining here which is a tonic, but I really just wanted to send you some solidarity and let you know that I think all of us who have lived with physical challenges for such long periods of time have peaks and troughs in terms of positivity.

I would end by saying stay strong but actually that's a crass load of bollocks. To quote my favourite First Aid Kit song, some days the best we can do is "keep on keeping on"

YANBU of course. I think anger is a pretty natural reaction tbh, you should not feel bad about being raging! Have you had any consultations with a pain clinic (referral via your GP usually)? My DH had DBT which has been pretty life-changing for us all. He's focussed on building up small things in life, listening to music (I bought him a Spotify subscription), making nice coffee (nice coffee subscription) and spending time in the park.

Do you take an anti-depressant? Chronic pain is just so hard on mental health, you might consider it. DH has just joined an online group for chronically ill people - he enjoys talking to people who just 'get it' as I don't really understand what it's like. It provides a small outlet.

As we've got older, our friends are starting to have chronic problems too, so DH has a group of friends that go for low-impact social time. Is there anyone in your group that is also managing this extra stuff?

In terms of housework and chores, we'd also love to have a cleaner but it is a big cost. I'm currently decluttering and hoping that going a bit more minimalist will make the housework a bit easier to stay on top of.

Sending you .

I hope my post doesn't come across as trying to 'fix' things, btw.

That sounds so hard and you have my sympathy.

I can't imagine how hard this must be day in day out.

You have every right to be pissed off.

I think you should start posting on supportive boards.
Putting your thoughts into words and sending them out into the ether, might be very cathartic.

25+ years ago a car banged into me, no damage but I had lower back pain for a month.

A dull persistent ache, all day.
It blew my mind how debilitating it was.
I continued work of course but it was exhausting.
I didn't feel like socialising as it wad working was enough.

Suddenly it vanished and it took 24 hours for it to register that it was gone.
It never returned but I have never forgotten it and whenever I read of chonic persistent pain, I shudder with the memory.

I can't imagine how hard it must be to live with this permanently.

Heartfelt sympathy.

Just a reminder we have chronic pain board and chronic daily chat thread for anyone needs it.

One thing I’ve learnt over years this you can come terms with a disability when it happens say 30. Feel like ok this is my life but then goal posts move? All your friends getting married having kids (you can’t get out bed or the house never mind go on a date) then at 40 you are grieving a very different lose again. It’s not just grieve get over it. Job done.

Then have hear how save their pension (no chance of you having more than pension credit) how they going down size and move country or travel world. Then of course it’s the grandkids and everything they can do then. It’s no wonder it smashes you in face from time to time!

The grieving process for disability never ends because disability is not a single loss it is a succession of infinite losses.

Anybody who tells you that you should be done grieving or "over it" is either newly disabled and hasn't hit their next loss yet, or has no experience of disability whatsoever.

I have had a couple of invisible conditions for years and a more recent neurological condition which has left me numb and in pain and in a wheelchair.

Everything is hard atm, seeing people get on with their lives whilst we can't.

I try and be positive and most of the time I am, however it is hard.

My husband was away this weekend doing a hobby related event. I am glad for him and happy he had a good time. He does so much for our family and in partially looking after me, he deserves his rare time away from us.

Internally I am so jealous. I am so limited, in what I can do. I am struggling to find work. I am struggling to find any UK caravan holiday we could afford for next year and what can we do on holiday when beaches and swimming are off the cards.

I find it difficult to put aside my pain and tiredness, to get on with things.

I get it. Sometimes it isn't just difficult to see the stars but flipping impossible. Offload away, I understand.

@marioduck

The grieving process for disability never ends because disability is not a single loss it is a succession of infinite losses.

Anybody who tells you that you should be done grieving or "over it" is either newly disabled and hasn't hit their next loss yet, or has no experience of disability whatsoever.

This is a very insightful post. I find my negativity and postivity come in waves and frequently triggered by new problems or new solutions.

I am glad to hear my bumpy path seems to be what most people in my situation have to travel!

I hear you OP. And I, too, try not to feel resentful.

For the most part, I’ve always tried to get my mindset tweaked to “this is your new normal, look at what you’ve still got”.

But I definitely felt a shift in the matrix with people starting to feel excited about “normal” life starting to creep back. It’s not that I resent them having this - it’s more the fact that it highlights how it doesn’t give me something to look forward to, things haven’t changed since pre-Covid. Plus, it kind of sends my PMA theory a bit skewiff!

And I know I’m being unreasonable, but it doesn’t mean that it’s not a valid feeling to have.

So please don’t feel bad. You’re not awful for feeling this, you’re just being honest with regards to how your condition impacts you. Much better than bottling it up.

@Worrysaboutalot

You're definitely not alone or abnormal.

This may help a little in making sense of things (I found it useful):

www.socialworktoday.com/archive/070714p18.shtml

It also reminded me of an important point - telling someone "it could be worse" when they're suffering is dismissive and damaging. It is natural to be hurt by that.

@marioduck

The grieving process for disability never ends because disability is not a single loss it is a succession of infinite losses.

Anybody who tells you that you should be done grieving or "over it" is either newly disabled and hasn't hit their next loss yet, or has no experience of disability whatsoever.

This, in spades. I am not in the same position as you, but I have a DS with severe SEN. It means that our life as a family, and my life in and outside the home, are so very very different to those of our friends and families. It can be hard to see. I really sympathise.

Hi op

I was so relieved to read your thread.
I have chronic illness too and some days I often wonder, what is the point anymore .
Since the age of 17, I have had heart surgery. Then diagnosed with RA and a chromosome disease. Since those diagnosis I have had hypocalecemia, seizures, and constant issues with the RA including fatigue and flare ups which result me being in bed for a week. Thankfully now on biologics which helps.
In the last couple of years, I have had breast cancer, fibromyalgia and now I've recovered from the breast cancer, I have to have an aortic valve replacement. I am actually devastated because I thought technologies would have improved 20 years on.
I feel so angry at the moment. My life is not my own. I'm also having menopause symptoms because of the tamoxifen.
I manage to work, but for how long I don't know. But you are not alone Op. you are not the only one feeling angry and resentful. Especially when it is one thing after an other.

Please delete all social media. It's full of people 'living their best life' and only males you compare your life to theirs! I had fb for years and recently deleted my account. Best thing I ever did for my mental health xx