What to do when lupus interferes with working?

Recently diagnosed with lupus and determined to keep on working full time as a secondary school teacher primarily because I cannot afford not to.

I have been pacing myself, leaving school early at the bell and resting on the weekends (all I do is work and rest, not what I signed up for!) and I've noticed it becoming increasingly harder because my fatigue has really increased past 2 weeks (a flare?). I don't like time off work because it's too disruptive to lessons but I had a day and a half off last week and spent all weekend resting (sunday pj day with several hours of marking). Went in to work yesterday had an alright day with not being too busy, worked 7.45am - 4.15pm, came home and cleaned and cooked tea before finally sitting down and doing nothing else from 7pm. This morning I feel floored with fatigue and I have had to call In sick to work.

I really don't know what to do because I can't afford to have time off work and my head teacher says she is making contact with OH.

I'm feeling really low :( help!!

14 Replies

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  • Oh dear. Jennawings I have seen some of your other posts recently - and with others on this site I know how hard this is. Many of us keep working and experience the same as you - total exhaustion, no social life - and (in my own case) eventually a dirty house, overgrown garden, and cheese on toast every night because I was too tired to cook. It sounds trite to say you need to put your health first - but you really do. I kept working until my kidneys failed (I did a full days undergraduate teaching the day before they carted me off to the hospital). You are not lazy - you are ill.

    Maybe you need to go part-time temporarily until your medication is properly controlling the lupus. Maybe you need different medication. Maybe you need to take some time out to get better and then start again. None of these decisions is easy - and financially they are all disastrous. Part time work with disability tax credits might be your best option from that point of view. But you may need to get your lupus under control before you are fit even to do that. Sorry.

  • I fully agree with the above. Try as I might I have not myself been able to regain endurance levels I had prior to diagnosis.

    Its not easy to come to terms with when so many things are stacked against you but you may need to find a new future direction.

    For your own protection in the immediate future joining organisations or a union might be your best option.

    Maybe you will be one of the lucky ones who put everything behind you and the medication works brilliantly, but take steps to protect yourself as well.

    I dont mean this to sound negative. Its practical advice.

  • I've managed to get a telephone appointment wit a doctor to discuss this stupid fatigue and I believe that I'll be able to get my medication today to start.

    I received an email from my head of department at school as I am off today saying she thinks its best I don't do year 10 parents evening in a couple of weeks. I really hope that she is saying that to be helpful and supportive, and not in a bad "you can't do your job way"

  • I would go back to the head of the department and suggest that she's discussing these decisions with you in advance, so you can guide her on whether it is necessary to remove you from it or you can actually do it with a little help.

    The important thing is to get a system in place with the school that allows you to work when you can but not let them exposed when you can't.

    Medication will eventually improve the symptoms but with this disease is best to be prepared, so a plan of action for those eventualities will work in both your favour and the school's.

  • Completely agree with this - it sounds like the head of dept is trying to be helpful, but it would be better if she discussed these things directly with you and then you can work out the best plan together - good communication between managers and employee is vital to managing disabilities in the workplace.

  • Oh dear Jenna, I feel so sorry for you, I amongst others have been there. It is easy to tell someone to put their health first when you know the implications for career and finances will be affected, but you really have to look after yourself, as said above it may just be for a while til your meds help, or in the longer term, whichever it is it's no good to carry on running yourself into the ground as it'll only end up in you being off work even longer.

    Talk over with your family and GP or consultant and try and plan what is likely to work for you right now, and also in the longer term.

    All the best.

  • Dear Jenna I really feel for you...as a struggling teacher myself I work a 4 day week now, I wake up every Friday feeling like I am on holiday! Does your subject lend itself to private tuition to make up for lost salary? In the end I felt it was better to work less for longer! Your recent diagnosis could mean that you can work a reduced week on full pay until the medication kicks in. Thats what I did for a few weeks at first. I echo that communication is important as it is easy to be so fed up with yourself that you assume other people are being critical when they aren't. Always be confident about your strengths and what you bring to the department

    OH can help you to keep your job and work with you on the adjustments which need to be made. Can you have a TA with you? PPA time spread thro the week or at start of day and you prepare at home? You need to give yourself time to adjust then see what you can manage. xxxx

  • Thanks for your positive words. I'm a science teacher so it assume there is always people looking for tuition (not that I'd have any idea how to go about it, only just out of NQT year) and I hadn't thought about it so it is worth looking into, thanks.

    I'm terrible at thinking people are being critical towards me, the staff in my school can be judgemental and I worry what they think. As it turns out, a friend of mine had mentioned to my head of department (when asked how I was) that I was struggling and mentioned that the last parents evening finished me off. Which is why she made the decision that I am secretly pleased with, she would rather me be teaching than off because of parents evening.

    Going to start my hydroxychloroquine tomorrow and attempt to get through the day doing the whole lazy teacher thing. Fingers crossed I survive!

    Thanks again

    Jenna x

  • Aww glad you found out why she suggested that - well meaning friend and the HOD were being useful then.

    Good luck with the new medication - it will be tough at first, but hopefully it will help. Be kind to yourself, especially if side effects kick in.

  • I agree with all the above.....be prepared the hydrochloroquine takes a while to kick in.....it was 6 months before I noticed a real difference.....was very frustrating but now the fatigue is significantly better... I can get through most days without feeling like I'm going to drop!.....

    Try and be patient, you'll get there in the end.

    Good luck xxx

  • Hi Jenna

    I dont much about it, but there is a government scheme called 'access to work'. Google it or go via gov.uk/access-to-work

    My limited understanding is that they are able to offer additional support to help you do a job - e.g a sort of 'PA' that might help with prep time, or for example, taxis to work.

    Like you, I start medications next week. Because it has taken me 9 years to get to a diagnosis, my manager has seen me unwell, and knows that when I am OK, I give 120%, allowing respite when Im not so good. Im also very lucky that it means I keep annualised hours (ie you are given your hours for the year). I can also now access my work email (even though its secure site bacuse of my job) at home, and I have a work phone too (a big deal for a health professional :) )

    I totally appreciate this may not work for you! I also know that drive to keep working. At the end of the day, it is a very very individual decision and one that you need to just revisit over the next few months, whilst you assess the medications effectiveness. My Consultant is also starting me on steroids whilst the hydroxy kicks in, maybe thats worth bearing in mind. I just look forward to feeling human again.

    Good luck, and look after yourself.

  • Access to Work is a fantastic scheme and very much underused and unknown. Your employer and the government split the cost of any adjustments that may be suggested - they will do an assessment of your needs and suggest what might help you to stay in work. The examples above are good - they may suggest something like an extra TA to help with prep etc. If you're a science teacher it might also be something like extra assistance when running labs. They will discuss what you find difficult and tailor it to your workplace. Ask your HR person or HOD if they can refer you to the scheme. :)

  • Hi I ended losing my job about 3 years ago! I was a Health and Saftey manager in a large dairy processing plant. It started with blood clots on my lungs, then infections, fluid on lungs, fatigue however the company for 3 years helped me with changing my hours etc, but due to the nature if the job it was unpredictable stressful and had court appearances, each time I was even slightly pushed my health just dropped.

    It got to the stage the OH said no more for my own sake I had to stop work!

    Even to this now and even without work I find it very hard just to cope with day to day life without resting for a few hours in the afternoon as lupus can be relentless! Even the smallest stressors send me into infection mode and bed for days!

    My consultant has said working in any role for the moment is out as my body won't cope!

    I was on a reasonable salary and had to drop to befits it took close to 18 months before I could manage the massive money drop! But must do is a great master!

    This is not the life I wanted but it is what I have and I have to make the best of it!

    I loved my work and really needed the money like everyone else but my health and wellbeing is so much more important.

    Not only for me but for my family and friends!

    With their support and help and now I'm on a finically even keel ( but living on a very limited budget) I'm glad the OH said enough is enough.

    If they hadn't who knows what extra damage to my body would have been done!

    We only get one chance at life we may not be healthy but we can still love and enjoy and plan round how are bodies are reacting to get the most we can out of life!

    While money and a career are fantastic quality of life means much more!

    I hope all works out for you! XO

  • I also worked as a teacher and found after a days work I would get home and fall asleep and end up eating at around 7:30pm. Then I would continue to work again. I was totally exhausted. It wasn't suggested that I went to OH until I had joint issues which affected my mobility. ( The school has to pay for this service.) The hierarchy were not supportive and did not understand the condition. I really sympathise with you as I fully understand what you are going through!

    It is the guilt you feel when you are away, not specifically for the adults but the pupils. I realised something had to be done when I started slowing down at work and not meeting set target dates. I had so many lists as I would forget what I had to do.

    It is making those closest to you aware of how you feel along with the staff you can trust, possibly giving them leaflets etc. Unless you have been in this profession no one knows how much work is demanded from you, all others see is the so called long holidays.

    Do look after yourself and remember you come first!

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