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

Give PIP a ring just to make sure it's been received and is being processed. The fact you call is noted on your case and can't do any harm re getting a decision.

The problems are:
a) you are almost certain to fall into the category where you clearly aren't well enough to work and hold down a job, and employers will know that but at the same time the government insist you aren't sick enough for benefits (eg PIP). There's a lot of disabled and ill people with autoimmune diseases fall through that crack.
b) It's not just work is it? It's about being able to take care of your children and house as well.
If your husband thinks you need to work and you are already at the limits of your health then he needs to take on more childcare and housework to enable you to have the energy to do that. If he won't, then you can't.
If you can find a part time, sedentary job you might actually find it easier than looking after your children and home though.

He's being reasonable asking you to work. There's your pension to think of as well.

He should be sharing or doing lions share of domestic burden.

You should get a cleaner, online shop if you dont already, make judicious use of convenience food or healthy quick meals.

Perhaps also think about adaptation to role when you do get a job so you can manage your health best.

Then she would get benefits

I would imagine benefits wouldn’t be enough to live on and the OP would still need to work.

I also understand where you are coming from as I have MS. I am lucky I am still in the same job I was in when diagnosed and they are very tolerant. I dont think I could get another job though now, and both DH and I understand I can only do my job as I can park close and all the physical aspects of my job are now impossible and I can only easy do the desk based work. But I get exhausted a lot easier now and the housework is now DH's job on top of his work. We are slowly outsourcing as much as we can afford eg we employ a gardener as I cant and DH has limited time and energy.

Does your DH understand that if you were able to find a job you could physically do, that a lot of the house work would need to be done by him or a cleaner which would begin to negate the extras brought in? Does he also understand other jobs you currently do such as childcare and school runs etc will fall more on his shoulders as you have limited capacity for them?

I suspect that he is all focused on the money side and fails to see how working would negatively affect the whole family including him. DH was worried about money when DS was young, and didnt understand that childcare for him would cost more than I would earn and that it was only moving near to my parents that I could consider working normal hours knowing that they would be able to help.

Teaching is a very physical job, particularly early years, on a bad day would you be able to safely do this? There is a lot you need to discuss with him before you even consider applying. A lot of companies prefer not to employ those with life long disabilities as we may need reasonable adjustments to work that may cost them money.

Thank you all for replying. There are so many that I can't answer all of them individually. They have given me a lot to think about and there are some really inspirational posts here.

It is NOT that I don't want to work, in fact stopping has been a big loss of identity for me as I have always been so independent. It is more the not being capable and coming to terms with that and not really knowing what to do next. Luckily there have been some great ideas here which I'm grateful for. I need to work out how to balance the best for my children, my family as a whole, my husband and ME and its not easy in light of this health condition.

Thank you to those of you who "get it" and have replied you have given me insight into how it can be done and made me feel a bit braver about moving forward! Xxx

@kittycorner

Lots of empathy for you *@foibles2011* I have a very serious health issue, and my GP has often told me everyone else uses it as a reason not to work, even though by far I’m higher on the ‘spectrum’ of symptoms and complications. Mine involved both an auto-immune disorder, 2-3 surgeries a year and ongoing treatment. I’ve also had cancer surgeries in the past, and gone back to work.

My honest answer is this. It was very hard. As a single parent I didn’t want my dc raised on benefits, I didn’t want to leave the home I owned which we couldn’t maintain on disability benefits. It was bloody hard when I was in the thick of it. I never wish anyone into that position. I was too sick to work. We need a robust system of benefits and supports.

Having said that, my cousin has a much milder auto immune response currently (lupus also and yes certainly can get worse over time) and holidays in Australia and Canada, has nights out with friends, parents her two dc. She doesn’t work because of her lupus yet I honestly think she could. If you can holiday, if you can go out and do things like shop, socialize etc then I think you can work if you can move through what feels hard. That includes what worries you and what seems overwhelming. When I met with the cancer nurse years ago who provided emotional support, she said that often the barrier to return to work is mental health, but that often it does good for health overall. She mentioned disproportionately that they see this among their patients. Maybe not working 60 hours/week but part time, starting slowly and building up. Being successful at 8 hours a week helps give the message that your diagnosis doesn’t define you. You can lead a full life as you are doing @foibles2011 and I think that can be good. The practice nurse at my surgery has significant disabilities and I always think of the many choices she’s made to be where she is. Though I doubt it is always easy. In her case her disability makes it hard to clean, so one thing she does with a portion of her income is hire cleaners to do the deep cleaning like bathrooms, floors etc.

What about a part time role in a school? A TA as opposed to a teacher with full responsibilities. I have a couple teacher friends who went into part time TA roles, one at a fee paying school where she works only with 3 children x 3 am’s week. She has 9 hours direct work with dc and is paid for 3 hours prep/communication with parents so 12 hours/week. She says the financial benefit alone made her mental health better, and hopes in next year to go up to 18 hours/week.

Not everyone can work. I support the benefit system fully. I vote with those who are most vulnerable in mind. I also think that where possible, working through fears and accommodation needs, can create a really positive way forward with people to be able to work and not get stuck in a diagnosis defining them. People with disabilities can lead full lives (with and without work), and need the support to do so.

Lupus has flair ups, occasionally that may mean time off. But I worry about making a decision about 52 weeks a year x say 20 years until retirement, based on possibly 4 ish weeks that work wouldn’t be possible. You just don’t know until you try. You may be surprised.

Wishing you well.

This is so well said. I’ve struggled with various auto immune diseases thought my life and learnt to work through pain. I do believe it is the right thing to do, and really helps my life , with finances, my mental health, with taking the focus off my pain and onto my professional duties, and my family, by not expecting to be carried through. That said, after trying many careers, I’ve settled on one that is desk based and can often be done from home. It’s really helped in terms of being realistic with my body. It sounds like your job couldn’t be less suited to your condition. So yes to work - the pain will be there whether you work or not. But hopefully you find a way into a sedentary job.

Would it be worth speaking to an occupational therapist at your hospital. They can go over how your symptoms affect you and if it's feasible to even think about working. This could let your husband know how your condition affects you. You shouldn't have to do this but sometimes if it comes from a professional people accept what they say.
It sounds as though you can't go back to your old job so think about the skills you have and if they are transferable. PPs mentioned maybe working from home and this is some you should consider if you're able to do this. You can apply for Access to Work if you need special equipment to do your job at home because of your condition -see gov.uk for guidance on this. They can also pay for taxis if you go out to work and are unable to drive or use public transport.
Good luck, it's a horrible position to be in but please think of yourself and how your health affects you x

The priority here is the welfare of your children. There is a generalized stigma of people who have chronic and variable illness being at home. Ridiculous statements such as "she looks ok to me" are no reflection of how a person's health is behind closed doors on a day to day basis. Fatigue in lupus and many other conditions is overwhelming on days for some. Your children need a Mum who is capable of providing for a their everyday needs and housework. It may get less if they become more independent as they grow. From your husband's point of view costs need cut e.g costly mortgage or top range car or activities such as meals out/ lunches out/ frequent activities away e.g golf/lads nights out (if this is the case). The benefit of a job for you would be for social interaction and focus on something outside ur illness or family ....stacking shelves would be unreasonable but a light admin job might suit....part-time. But with young children school collections etc it may added stress to someone who has significant health issue (plus childcare cost). Believe me you are contributing to the family home and children's welfare. Wish u well

I've got Psoriatic Arthritis (and half the alphabet of comorbidities), thanks to my immune system's preferred methods of telling me it hates me.

I work - BUT - that's manageable due to finally being on the right medications, therapies and many years of adapting to the situation. And DP does more than I do at home because he doesn't have any physical difficulties.

I'm currently doing well and am actually able to gradually increase exercise, which although it doesn't 'cure' the autoimmune crap, it does make a huge difference to pain caused through deconditioning, reduces the cardiac risk, reduces injuries, etc - and makes me feel vaguely good about something my body does. If I could physically manage to get there, in the depths of a flare, it felt amazing to be in a swimming pool, but when I couldn't even manage that, I felt horrendous.

But then again, having work was also vital to start me on the path of increasing activity to build up enough strength to be able to consider the exercise - during my last flare, my daily steps would be around 26 if I didn't literally have to leave the house. When I first went back to work, they increased to around 2000 on average, but shortly afterwards, it was up to 5000, then 6000, then 7250 and so on. Because it gradually built up, I didn't have the crash and burn - and three weeks after that first exercise session, it was up to 8,450 when I'd thought I'd had a relatively quiet day.

I agree completely with him that the stress and strain of being the only earner is phenomenal, as I've done it. But I also agree that there's a possibility of increased pain when still trying to get a handle on disease activity; I certainly couldn't do what I do now ten years ago - or during my most recent/most severe flare, where I spent three months off sick and two of those barely able to hold a full mug of tea.

There's no right or wrong with this, tbh. Everybody's autoimmune disease is different in where it attacks, how it feels, how active it is right now, etc. The pressure that people feel from supporting a whole family on one wage is also very real.

It is unlikely that you will feel the way you do right now forever, though. It feels as this is it and it can only get worse - but that's the nature of autoimmune stuff, it tends to go from remission - relapse - remission or slow burns with occasional less intense flares - what it rarely does is stay still. I think it's good for my emotional health to remind myself even in the worst days that it isn't always like this - and perhaps looking for a sedentary, short hours job can help reinforce this for you as well as remind your DH that you aren't doing this for fun/pretending it's worse than it is.

After all, sometimes there is a choice of

Be exhausted and in pain whilst skint or

Be equally exhausted and in pain but not skint.

I prefer the latter.

Ask him how he’s going to afford childcare when you divorce? 50:50 seems to be the norm these days abs you can claim full benefits.

Ask him how he’s going to manage work and house clean the house cook and do his own washing?

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.

@Howshouldibehave What do you think people do who are too ill to work and do not have a partner or family to support them? They live on benefits and are very poor.

@BluebellsGreenbells

Ask him how he’s going to afford childcare when you divorce? 50:50 seems to be the norm these days abs you can claim full benefits.

Ask him how he’s going to manage work and house clean the house cook and do his own washing?

You do realise plenty of people work full time and manage to cook, clean and do their washing . Hardly onerous.

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.

Foibles, is your DH ever unwell? If so, what is he like? I know I’m generalising but I do believe the ‘man flu’ syndrome exists to a large extent. When men are unwell they take to their bed. Women just have to get on with things.
If he ever expects sympathy the he is BU.

When I married I meant my vows that it was in sickness and health. No one knows what the future holds. I think if you would abandon a spouse who si too ill to work, you have no business getting married.

@IceCreamAndCandyfloss so you are assuming if they split the children stay full time with their mother? Bit sexist.

Have you checked out any alternative treatments for your lupus, OP? I ask because of a friend of mine was diagnosed with lupus when her son was born and a naturopath either cured it or has given her so much quality of life that she never complains about it. Her son just turned 22 a couple of days ago.

If your symptoms are so severe that you can’t work, have you spoken to your rheumatologist? It may be that your immunosuppressants need to be changed or increased.

I’m well aware of how debilitating lupus can be (I’m a nephrologist, and have plenty of lupus patients), but in between flares you shouldn’t be so ill that you are unable to work. Symptoms yes of course, but not to that extent. That suggests to me that your disease isn’t adequately controlled.

@Howshouldibehave

Then she would get benefits

I would imagine benefits wouldn’t be enough to live on and the OP would still need to work.

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

@esterwin

When I married I meant my vows that it was in sickness and health. No one knows what the future holds. I think if you would abandon a spouse who si too ill to work, you have no business getting married.

That is just as judgemental as the people who think sick people should just get on with it and work.

You might have meant your vows but what is your lived experience? I've been my husband's carer for 30 years, I had 2 children under 3 at the time of his diagnosis as well as two older ones. I had to work, care for him and bring up the children. It is hard and it is easy to talk about vows if you haven't had to do it.

So yes I've lived my vows but I don't condemn anyone who finds they can't any more than I condemn someone who can't work.

Can you do online tutoring?

I was chatting to a friend who's coming through a long bout of autoimmune illness. She was unable to work full time for several years but managed to take on some short contracts and some other work training others in her field.

Would a sympathetic supply agency be able to find you some short-term placements for when you're not in the middle of a flare-up? A day here and there sounds like it might be good for your self-esteem and could work for you.

Look if you are barely managing ATM and feel ill then I think DH is being unreasonable to expect you to work on top .There is an expectation that women will work ,this is fine normally but if you are not well then surely the main thing is for you to feel better .Maybe GP/Nurse/Family Member could explain to him? Can you make changes to your life ,cheaper SM, maybe use/sell on EBay? If you really have your backs to the wall ATM then maybe look for a cheaper house/area?

I also left EY work after a chronic illness/condition diagnosis. Even on my best days I'd struggle to work there, let alone every day!

Could you look into some WFH work if the money is necessary? Something very flexible, possibly freelance might suit you.

You husband is very unreasonable to push you to work- you're clearly not up for it and he's being very narrow-minded to think you can just get on with it.