AIBU to not think I can work?

[foibles2011]

I know this is going to get some mixed responses! Trust me I'm extremely mixed up about it which is what has led to the post.

Three years ago I was diagnosed with an autoimmune condition which has now been classified as lupus which makes daily living in general with 2 young children hard. When I was diagnosed I was not working as we had just moved area and due to how ill I've been and constantly changing medications, covid etc I haven't worked since.

Now though my husband is pressuring me to go back to work (I was an early years teacher). I honestly don't feel that I can, I struggle just looking after the house and kids. I've looked into part time work etc but feel that it would just be too much. Even going on an extra walk one day can throw me into an illness flare as it is.

But my husband keeps reminding me how unfair it is that all the financial responsibility is on him and how much easier our lives would be if I was bringing money in - the guilt is awful.

I've been looking at career changes, studying something new, minimal hours, anything but my honest feeling is that adding more to what I'm already doing will make me more ill BUT by not working I'm unfairly pressuring my husband financially and not contributing, there's so much more we could do if I bought in money. The stress is really getting to me.

I keep making excuses to avoid an all out no so AIBU?? Should I try harder?

Xxxx

I have SLE, SS, and RA (and three young children) so I do understand where you are coming from but I think you need to go back to your rheumatologist and find a combination of medication that works for you because I work part time (30 hours) and frequently do overtime to go over full time hours. Definitely look for another job that suits as well and make sure your husband is aware he will need to be doing his full share of everything which includes the mental load.

@ancientgran My DP is chronically ill.

How do you propose someone who is disabled or too unwell to work, goes to work? hmm

It’s not ‘full time working in EY’ or ‘not working’-those aren’t the only options.

Suggestions such as online tutoring or supply teaching once a week are worth considering.

Yes if you can find work you should - may be hard but you’re doing the right thing by looking.
However your husband is being U to put this much pressure on you. You didn’t choose to get sick. And it’s hard being the sole earner but marriage is for better or for worse!
I’d be more concerned that he isn’t taking your illness seriously. Flare-up chronic illness sufferers often face this issue because they have be completely fine on one day and bedridden the next.
Or maybe he’s frustrated as well?
Either way a good long talk about expectations and perhaps some counselling would be in order ...

Some of the replies on this thread highlight how little many people understand chronic ill health / disabilities. Saying things like “but what about your pension?” and “who is going to pay for you?” is at best just insensitive and at worst totally ignorant. Many people (like myself) have no option but to rely on benefits to manage, and basically accept that we will have no pension other than what will be given to us via state pension - or other benefits if that ceases to exist.

Saying things like go back to your specialist and get a treatment that works - if only! For some yes of course people find things that work and that’s brilliant but for many others like myself there is no “fix”. I am currently on my 4th different combination of medication for lupus, having had to stop the previous ones due to side effects. Because I have so many different conditions the medications (all 22 of them) interact with each other and I am limited in what I can take. I am always hopeful I am going to find that magic bullet but haven’t as yet.

When I was younger I was career driven, ambitious and worked full time as a senior marketing manager in central London. I am now practically bed bound many days, trying to struggle surviving with being a parent. Disability and ill health isn’t something that happens to “someone else” - it can happen to anyone. People shouldn’t be so quick to judge.

I get it OP. I too am and EY teacher with lupus. A few years ago I had to give up my job due to ill health and had to rely on my DH. He resented it and didn't understand my illness. We're now divorced, my health has got better and I'm with a DP who gets my limitations. But I have now managed to go back to teaching full time.

I'm a single parent with (highly active) Multiple Sclerosis. I work full time. I'm knackered but reasonable adjustments from work helps. With my PIP I pay for a cleaner, gardener and a window cleaner. It helps massively!

Only you know what your body can and can't do.

[quote esterwin]@ancientgran My DP is chronically ill.[/quote]
Well you should know better than to condemn people then.

If they split, he would be likely be financially better off as he would only have to pay child support and his only living costs, not the cost of four people full time

He would have to pay out for child care, before and after school and holidays and nursery care on “his” time plus half the cost of everything in between.

He may or may not be better off financially but his time would be vastly reduced when he has the children to care for.

Not read the entire thread so apologies if this has already been suggested. At the moment there is a ton of tutoring work through the national catch up programme - supply agencies are recruiting. It is possible to do it online. You might find this works for you - teaching but from home and without the stress of a full class?

@Getawaywithit do you have links or ideas about where to find info on this? I’m interested.

@IceCreamAndCandyfloss

It needs to be a joint decision for you to opt out of earning anything where you need his financial support. It sounds like the children are of school age so no reason not to do something during the day to ease the pressures on him.

It’s also the long term picture, your children will benefit from the extra income in many ways, you will have the means of some financial independence in the future should things go wrong, a pension etc.

Did you miss the bit where she said she has been diagnosed with lupus?

I suggest you read up on it.
www.nhs.uk/conditions/lupus/

Lupus is brutal. Especially until you have figured out what works for you. And early years teaching requires boundless energy so I don't think you are unreasonable to avoid that for now. It may be different in a few years.

I would second looking into options like tutoring or similar.

Buy equally with a debilitating illness you are doing well to even manage the house and the children

@MintyMabel

Personally I couldn't not work. Who would pay for me? That's my job. I feel for you but you still have to work to support yourself.

Do you have a debilitating health condition? If not, then this is irrelevant.

I can’r find who wrote the quoted bit on your post, but good grief, talk about tone deaf? Whoever is was, let me ask what you’d do if you were diagnosed with something like MND? Would you still expect to continue to work when your body can’t? Or if you were paralysed in an accident?

[quote Firstbornunicorn]@Getawaywithit do you have links or ideas about where to find info on this? I’m interested.[/quote]
Google NTP - the provider for September is changing, it was EEF. Ranstad are going to be the new provider. I currently tutor online for Pearson - until the bids are confirmed for September they're not sure if they will be continuing.
I do 5 hours a week, but could do much more.

Does “in sickness and in health” not mean anything anymore.

I think the majority of posters on this thread have no idea of what it's like living with long term chronic illness.

If you don't feel able to work then you shouldn't work and although I can understand that this may mean additional pressure on your husband unfortunately chronic illness does create additional pressures on a couple and a family. It's the nature of it and it can't be helped.

Whether that's the pressure of providing care, of dealing with someone who has mental health issues, with taking on additional jobs at home that your partner can't manage or being the sole breadwinner. It's hard and often shit. But it's also pretty shut being chronically ill.

I have chronic ill health (also autoimmune) that causes long periods of fatigue, plus other physical health issues, serious mental health issues and ADHD. it's bloody hard on both me and my husband. I am managing to work three days a week but I couldn't manage any more than that and even that has a impact on what o can do in my time not working. Very often I am exhausted and can't do much at all other than work or stay at home. If I had young children I definitely wouldn't be able to work. I'd have used all my spoons on working and have nothing left for them so that would also fall to my husband.

I only work as much as I do because my condition is hopefully not permanent. I am hoping I can return to normalish health in the future. Technically my condition is manageable I just need to get it to the manageable point. If it were permanent and not manageable or was degenerative I would not be working now.

Just as a comparator. My husband works long hours in a very stressful job but also picks up all the cooking and kitchen cleaning after meals as I can't manage it. He does loads of other jobs too and takes on a huge amount for both of us dingle handed. It's very hard on him but I can only do what I can do. I can't magic energy out of nowhere or magically be well so I can do more.

And my husband has said that if I feel I need to or want to give up work I can (because I have lots off days and weeks when it feels too much). He would support me fully if I needed to stop.

I also have a friend with MS with children. And she doesn't work either it would be way too much for her. Her husband supports her in that, does a full time job, cares for her, owe more round the house and provides a lot of the care for the children.

Not saying it's easy, it isn't. Far from it. Its very hard on both people in a couple when one is ill but it's the reality of living with chronic illness.

You need to support and look out for each other and come together on this or you won't make it. There also need to be some acceptance of the realties of life with chronic illness. Trying to push you into working is just going to trigger your condition and cause you become more unwell which will have a knock on effect on your ability to care for your children and your home and be a wife and partner. And your partner would then find there's even more pressure on him. Pressuring a sick person to do more is not the answer.

And if you don't know it already look up spoon theory and show your husband.

@ElphabaTWitch

Are you in uk? I would advise looking at ESA and PIP for long term chronic illness and disability. It doesn’t seem that work is an option for you. You may be able to mentally do a job, but the physical practicalities seems that sustaining any job would be almost impossible as you couldn’t commit to it.

Op will not qualify for ESA is she hasn't worked in the last 2-3 years.

I once went to a posh restaurant where they served portions like that. Had to get a bag of chips on the way home. Ridiculous.

I have an autoimmune neurological condition, symptoms Tuvalu similar to multiple sclerosis. I'm a single parent of 2, and I work part time in a very stressful role (social work).

It's fucking hard. You have to really want to do it.

I do it because my children's father won't pay maintenance or help meet any of the costs like extracurriculars/childcare etc. Also because my job is really important to me and I'm lost without it. Also it means I can maintain our pre illness standard of living (pitch fees for our holiday home etc).

But it's a struggle, I have to pay a cleaner because I physically can't manage housework. I push myself to do stuff with the lkds, we go away pretty much every weekend they're with me, we do a lot of theme parks snd days out etc. Then the weekends they're with their dad/my days off when they are in school I just fucking sleep and take lots of painkillers. That's how I do it. But I couldn't unless I really wanted to.

@Babyroobs

I once went to a posh restaurant where they served portions like that. Had to get a bag of chips on the way home. Ridiculous.

Oops sorry posted on the wrong thread !!

Lots of companies are employing people to work from home and some great suggestions on here.

As the sole earner in my household I can't tell you that the pressure is immense, I can't cope with it all and am just about to lose my mind.

If there is something you can do you should try.

I say that kindly.

Also for all the posters who are saying to just go and get "cured" by new meds or have the Consultant talk to DH
I have severe RA plus other autoimmune and other illnesses. I have been on the urgent waiting list to see my consultant for TWO YEARS, and the please please please see her now letters got my appointment bumped up from Dec 21 to July 21.
My medication stopped working 2 years ago, it's been completely awful for the past 9 months and I'm held together by multiple steroid injection and far too many steroid tablets.

So how is the consultant going to have time soon to explain to a DH who just isn't getting how ill his wife is.

OP, giving up work is a real loss, of money, of plans for the family and most of all your identity. You and your husband will both be struggling with it.

It's been 10 years here and we still do.

Great that you have applied for PIP, if you are turned down, please appeal the decision and send in ALL medical evidence. The slippery bastards seem to want to pretend (like a lot of MN) we don't exist and/or are only out to cheat the system.

Apply for all benefits you can, PIP is the gateway to more usually though. Check tax credits and rates reductions. Google and see if there is anything you can apply for.

The annoying thing is every benefit or grant or scheme takes ages to grind its way through, sometimes they work out though.

I dont have the energy/ability to be fit for work enough to hold down a job. My perfect job came up recently, one I would have been perfect for. Then I realised out of the past 16 weeks I had been ill/very unable to work for 12 (and still just about coping the other 4). Who would keep an employee like that?

I do flip clothes and trinkets online. I can take it up when I'm well and stop when I'm not. It's not loads of money but might pay for a holiday.
(Which I can go on, because I'm chronically ill, not dead)

Your husband has a point. It’s a politeness to do something to contribute to the household if you can. I have a friend who was a teacher, left the profession to work in the same industry as me and then when COVID hit started teaching English to Chinese children by some sort of Zoom technology. It’s essentially conversational English rather than sitting them down with verb tables and spelling tests. It’s through an agency and she can accept or decline as many of as few hours as she wishes. If you can use social media, you can do that. She says it’s no different than speaking to her grandchildren in another state by Zoom.

@Iknoww

Also for all the posters who are saying to just go and get "cured" by new meds or have the Consultant talk to DH I have severe RA plus other autoimmune and other illnesses. I have been on the urgent waiting list to see my consultant for TWO YEARS, and the please please please see her now letters got my appointment bumped up from Dec 21 to July 21. My medication stopped working 2 years ago, it's been completely awful for the past 9 months and I'm held together by multiple steroid injection and far too many steroid tablets.

So how is the consultant going to have time soon to explain to a DH who just isn't getting how ill his wife is.

OP, giving up work is a real loss, of money, of plans for the family and most of all your identity. You and your husband will both be struggling with it.

It's been 10 years here and we still do.

Great that you have applied for PIP, if you are turned down, please appeal the decision and send in ALL medical evidence. The slippery bastards seem to want to pretend (like a lot of MN) we don't exist and/or are only out to cheat the system.

Apply for all benefits you can, PIP is the gateway to more usually though. Check tax credits and rates reductions. Google and see if there is anything you can apply for.

The annoying thing is every benefit or grant or scheme takes ages to grind its way through, sometimes they work out though.

I dont have the energy/ability to be fit for work enough to hold down a job. My perfect job came up recently, one I would have been perfect for. Then I realised out of the past 16 weeks I had been ill/very unable to work for 12 (and still just about coping the other 4). Who would keep an employee like that?

I do flip clothes and trinkets online. I can take it up when I'm well and stop when I'm not. It's not loads of money but might pay for a holiday.
(Which I can go on, because I'm chronically ill, not dead)

I'd be complaining if I were you. My care continued throughout the pandemic via phone or face to face. My meds have been adjusted in that time too and I've seen the rheumy nurse as well. Not all hospitals have closed their doors to patients.