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I think I am being discriminated at work for having CFS.

Discussion in 'Finances, Work, and Disability' started by markielock, Mar 16, 2017.

  1. markielock

    markielock staying independent, one day at a time

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    Hi guys,

    I am worried I am being indirectly discriminated at work because I have chronic fatigue syndrome. I am not sure what to do ☹. I am not sure how detailed I should be about this situation but I shall try to communicate my predicament as clearly as possible.

    I would be so grateful for any feedback if you’ve had or know of any similar experiences.

    This is rather long so TLDR; I think I am being indirectly discriminated against because my institution has an unwritten policy (that contradicts their written policy) to resist and reject working from home as a flexible working option. This policy, although applied to all, particularly disadvantages me because of who I am. The institution is also not willing to explore any situation where their policies put individuals at a particular disadvantage. This has resulted in the institution not properly and fully exploring my options for flexible working and how they may benefit me and their business. This is negatively impacting my health and my work performance.

    A bit of background:

    I have worked for this institution for just over a year now. Despite the fact this job is difficult for me to maintain, this is the first time I have been able to hold down a job since getting CFS 7 years ago, because it has been part time. I have had two roles at the institution since being employed:

    · An assistant role where I help customers and troubleshoot their I.T. issues. This was an irregular timetable and out of hours (weekends and evenings) for 18 hours a week.

    · My new role that I have been in since January: delivering web support and troubleshooting for the institution website, this is 20 hours a week, 5 hours a day for 4 days a week.

    I have steadily realised over the last year that a part time commuting job where I must be present in the office is still unsustainable for me to maintain over the long term. I find myself trying to ‘push’ through my symptoms, which causes me to get worse and worse and leads to more and more sick days until I suffer a mini-relapse and am off for a month (which has happened twice now). Even when I am off for this amount of time, I never fully recover. I feel like a ticking time bomb, hitting a lot of ‘sickness leave triggers’, waiting to be fired. I also worry about a much bigger relapse, which feels like an increasing possibility as my symptoms worsen.

    On top of this, my quality of life and wellbeing is always a struggle to maintain because getting to work and working in the office takes a lot of my resources. It’s not a very fun existence a lot of the time and I feel like I lose a lot of time for ‘me’. This is leading me to a lot more stress and anxiety, which never helps.

    My main problem:

    My main problem is the commuting and being in the office. I find the work fun and I am regularly praised for being good at it. The work I do is also entirely done in a web browser and could be completed from any location. There is no tangible reason for being in the office to do my day-to-day service. Any physical appointments, such as meetings and any training sessions I need to conduct are scheduled ahead of time.

    If I had the option for more flexible working options, such as the autonomy to work from home on days/weeks that I am feeling worse, it would save a lot of my energy resources, improve my wellbeing and quality of life and make me more productive. I am not very productive in the office and only have a good ‘2 hours’ before my performance declines. It also leaves me very limited for the rest of the day. This is before the delayed fatigue and worsening of the symptoms kicks in!

    Why I feel I’m being discriminated against:

    I have tried to approach them on these issues twice (the first time in my first role, and in the last couple of weeks in my second role) but have met resistance before I have been able to communicate the severity of the situation to them. I am quite concerned because my employer advertises themselves as an inclusive employer. They have their own disability services for customers and staff and have policies on their website for flexible working, which include home working as an option.

    My employer has been reluctant and even out-right rejected to properly and fully explore my situation and flexible working options with me. On both occasions of trying to sort out this issue, Occupational Health and HR have presented inappropriate 'set solutions’ for me without exploring my individual situation.

    I feel it is important to note that if my employer had explored the option of home-working with me and presented a very good and provable business reason for why this wasn’t possible, I would completely understand. I would be very happy to try different, appropriate and reasonable options that we discovered in the discovery process. The problem is they didn’t explore my situation and their set solutions were not suitable.

    First time, toward the end of last year:

    In my first role, I had hit so many sickness ‘triggers’ as defined by their sickness policy, and was asked to see Occupational Health (OH) to discuss any ‘reasonable adjustments’ that could be made.

    I came to the OH meeting with a lot of information about CFS (information regarding my symptoms and the action for ME guide “An employer’s guide to ME”), my complete medical history and hospital diagnosis. I also brought in a list of solutions based on my experience with working the job and living with CFS:

    · Fixed shift pattern and hours. My pattern at the time was irregular at the time and a fixed shift pattern could have allowed me something to get ‘used’ to and manage down time around.

    · Working from home when possible because, although this role did involve more face to face contact, a big part of the job was working on our remote service desk, which I could do from home.

    · Being held accountable in a different way from the sickness absence policy, which works well for catching out people ‘abusing’ being off sick but puts me at a disadvantage and penalises me for having a disability.

    In the meeting the OH advisor was reluctant to explore any of the material I presented and didn’t directly ask me about my disability or what my day-to-day life is like at work with my disability. When offered, they were not interested in reviewing my diagnosis or medical history. They refused to medically explore the flexible working option of working from home because “the institution would not like it”. Despite my insistence, they were not willing to put flexible working options in the report and said that the idea of home working “had been through the unions” and it was generally frowned upon. They also were not willing to explore how the sickness absence policy could put me at a disadvantage. They then went on to assert that the “fact” that if the business was smaller they could “treat staff more fairly” but managing the fair employment of 5000 people is a lot harder and “broad strokes must be made”.

    The perceived resolution to this incident was that I got fixed shift pattern/hours. However, this isn’t true because it was a coincidence that I was moving to a new location within the institution that needed me to have a more fixed timetable when working in that location.

    I made a complaint to HR about my experience and the result, but the HR officer was quite defensive and said they were confident occupational health had explored all appropriate reasonable adjustments.

    I personally think the institution could have made a compelling business reason as to why certain flexible working options, such as home working, would be unsuitable in this job role. But the fact they weren’t willing to explore all my options in the first place, regardless of my situation or even my job role, put me at an unnecessary disadvantage.

    Second time:

    In my new role, I am working a regular shift pattern in an office and, as I said earlier, my work is done entirely in a web browser with no human contact unless I have scheduled in a meeting. I applied again for flexible working with my new line manager. I applied for the autonomy/option to work from home if my symptoms had grown more problematic and would affect my future performance and physical attendance over a longer period if forced to come in to the office. Upon discussion, I laid out the options and the benefits this could have on the team and my own productivity. He was worried about ‘setting a precedent’ with other members of the team because he didn’t trust some members of staff to work from home. However, he was happy with letting me try and wanted to trial it for 6 months.

    On my next shift, I was called to an unexpected meeting with my line manager who had been in touch with the same HR Officer that had been involved with the first incident. The decision to trial it had seemingly been reversed by HR. I wasn’t explicitly told that I couldn’t work from home but it was implicit that the option wasn’t favourable and that the trial wasn’t taking place. Instead, I was told that I should explore some other options instead, which were presented to me. The options were to either start later in the day or do 4 hours shifts over 5 days instead of 5 hour shifts over 4 days, which are both unsuitable and miss the point of my individual situation of living with CFS. Again, my individual situation hasn’t been acknowledged, my options have not been explored properly and I am put at a disadvantage.

    I am currently off on sick leave because my symptoms have worsened, which could have been avoided if better flexible working options were in place sooner. The stress of having the trial that I thought would help my situation snatched away suddenly is also not helping.

    Worryingly, this has led to some discussion at work as to whether CFS is a disability, despite the fact the Equality act 2010, which they also have a PDF outlining on their own website, uses CFS as an example of disability.

    Their concerns as managers were that it could be a ‘health and safety’ risk if I am working from home sick when I should be resting to be well enough to get in to work, which again misses the point about having a fluctuating disability, which the Equality Act clearly defines. It’s boggling to see how little is understood about the condition and disability.

    EDIT: I feel it is important to add in that my manager suggested what I do outside my job could be held against me because 'it is impacting my job role', although I do little but day-to-day tasks on account of not having much energy from working. Should this even relevant to them?

    In conclusion

    I feel there is a lot of communication that needs to be had with the institution. Whether it is suitable I can work from home or not, there is some clear bias and lack of understanding within the institution that prevents them from making a clear assessment as to whether a potential solution is reasonable or not.

    Has anyone had any similar issues?? I’m not sure what my next steps are. I’m worried about losing my job and annoying people. I feel as if I have done something wrong by merely suggesting the idea of flexible working. Is there anything I could be doing better to communicate my situation??

    Thanks so much for taking the time to read through this.

    Kindest Regards,

    Mark
     
    Last edited: Mar 16, 2017
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  2. charles shepherd

    charles shepherd Senior Member

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    Dear Mark

    You might find it helpful to obtain a copy of our new MEA information booklet that covers all aspects of ME/CFS in relation to employment and occupational health - especially legal issues, modifications to hours and duties, and the way in which ME/CFS is covered by the 2016 Equality Act

    MEA booklet: http://www.meassociation.org.uk/shop/management-leaflets/employment-advice/

    From what you say, it sounds as though you ought to take some legal advice in relation to the 2010 Equality Act from either your union/professional body or from a local solicitor who specialises in employment law

    Brief summary of the information in the MEA employment booklet:

    1 We have a brand new MEA information booklet that covers all aspects of employment, including adjustments at work and strategies for returning to work. This booklet also covers how the 2010 Equality Act and the (previous) Disability Discrimination Act (DDA) applies to employers and employees when it comes to making suitable adjustments to hours, duties etc to accommodate employees with ME/CFS. Unfortunately, I receive regular queries relating to employment where the employer is clearly unaware that ME/CFS is covered by this important legislation and consequently make unreasonable assumptions about what an employee with ME/CFS can be expected to do and/or fail to appreciate that any return to normal activities is likely to be slow and erratic.

    MEA Booklet: http://www.meassociation.org.uk/shop/management-leaflets/employment-advice/

    2 We have two leaflets that cover issues relating to obtaining an ill health retirement pension and how prognosis and permanency should be viewed in relation to applications for retirement on the grounds of permanent ill health in ME/CFS. We also have a leaflet that covers problems relating to permanent health insurance (aka income protection) policies.

    3 The DDA and Equality Act may also relevant to a situation regarding possible dismissal if you are no longer able to cope with the workload. The chapter on Employment in 'Living with ME' (Vermilion paperback available free from any public library) has details of cases where the DDA has been used by people with ME/CFS in employment law disputes. The MEA website news archives has details of more recent employment tribunal cases - if you need to follow this up in due course. Details of an important precedent DDA and ME/CFS case (O'Neill vs Symm and Company) where I acted as an expert witness can be found in the DDA section of the MEA booklet and in the Vermilion paperback.

    4 We work with a firm of London solicitors who deal in employment law - but any consultation here would be on a fee paying basis. More information on their services can be found in the current issue of ME Essential magazine.

    5 We also have two employment law solicitors who are willing to provide some preliminary free/pro bono information to MEA members.

    6 The MEA booklet for doctors - ME/CFS/PVFS - An Exploration of the Key Clinical Issues - has a section on employment issues that can be shown to your occupational health department/physician.

    7 Information about what to say to an employer about your state of health is covered in an item in ME Essential magazine.

    8 Re DDA and 2010 Equality Act:

    I established that ME/CFS comes under the DDA when I appeared as an expert medical witness in the O'Neill vs Symm case. ME/CFS is listed as a condition that comes under the remit of the 2010 Equality Act.

    9 If you are continuing to work with ill health or disability you should check whether your employer has a policy of Disability Leave. I have written about Disability Leave in more detail in ME Essential magazine.


    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
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  3. charles shepherd

    charles shepherd Senior Member

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    From the section in the MEA Employment booklet covering on Employment and the Law

    8 EMPLOYMENT AND THE LAW


    8.1 The (1995) Disability Discrimination Act (DDA)


    The DDA was brought in to provide disabled people with legal rights relating to a number of important areas, including employment. Several people with ME/CFS have made use of this legislation and helped to establish that the DDA could apply to people with ME/CFS. The first case involved O’Neill vs Symm and Company Limited – where Dr Shepherd provided expert medical opinion. Details can be found by entering the case names on google.


    In relation to employment, the various parts of the DDA meant that employers had to make reasonable adjustments to employment conditions to accommodate the needs of a disabled employee.


    8.2 The (2010) Equalities Act (EA) is an important piece of legislation that combines, stengthens and replaces previous discrimination legislation, including the 1995 DDA.


    A person is disabled under the act if he or she has a physical or mental impairment (ME/CFS can be classed as physical or mental) which has a substantial (where the focus should be on what the person cannot do) and long term (i.e having lasted, or likely to last for 12 months or more) adverse effect on his or her ability to carry out normal day to day activities.


    ME/CFS is listed in section A6 as a specific condition covered by the Equality Act but each case will depend on the particular facts involved in the case. There is, in fact, no need for a person to establish a medically diagnosed cause for their impairment. What is important is the effect of the impairment – not the precise cause.


    In relation to employment, this means that employers have to make reasonable adjustments (which will depend on the size of the employer, disruption, cost involved etc) to employment conditions to accommodate the needs of a disabled employee.


    A good employer should be willing to make any necessary and reasonable adjustments.


    A bad employer may not be willing to recognise ME/CFS and make any adjustments. This may then lead to a situation where dismissal is threatened due to incapacity to do the job – in which case, in legal terms, this may be regarded as unfair dismissal or constructive dismissal (if someone leaves voluntarily). See next section for more information. If you find yourself in this situation you must take urgent and professional legal advice.


    Reasonable adjustments and modifications to the working environment could include any of the following:


    ◦adjusting equipment, e.g installing speech browser software onto a computer

    ◦providing a reader

    ◦providing supervision, e.g a mentor or support worker

    ◦modifying equipment, e.g a specifically designed chair

    ◦modifying reference manuals, e.g providing oral instructions as an alternative to written instructions

    ◦altering working hours to give a later or early start or longer lunch break

    ◦allocating duties to another member of staff

    ◦transferring a disabled member of staff to fill an existing vacancy, e.g a sales representative who has to give up driving could be transferred to an office-based vacancy

    ◦assigning a different place of work, e.g allowing home working during a period of rehabilitation

    ◦allowing time off for rehabilitation or medical treatment

    ◦adjusting premises or equipment, e.g the direction a door opens to allow for a wheelchair user


    Dr Charles ShepherdHon Medical Adviser, MEA
     
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  4. markielock

    markielock staying independent, one day at a time

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    Hi Charles,

    Thank you very much for taking the time to read through my post and offer this information, it's very appreciated. I shall be sure to read through the leaflets and start making a plan of action.
     
  5. Oberon

    Oberon Senior Member

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    I do not know the law in the UK, but here disability accommodation is to the point of undue hardship and is a grey area. I am not a lawyer and again do not know the local legislation but if it is like the legislation here much of this case will be about proving that allowing you to work from home would not negatively impact the employer and isn't past the point of undue hardship.

    I will say that I could argue a case on your employer's behalf meaning this is likely not an open and shut case and I would strongly recommend you get the opinion of the appropriate legal counsel before pursuing a battle with your employer.

    I do think it's important to note that HR is not in any way shape or form your friend. The OH adviser is also not in any way shape or form your friend. They are hired and paid for by the company and their legal role is to implement policies and procedures primarily for the benefit of the company. If the company discourages working from home they will also discourage working from.

    Do note that many HR representatives are caring and compassionate people and do try and help employees a much as possible but ultimately you need to be quite careful about how you approach things when dealing with HR.
    _______________
    As a side note if you are open to pursuing a new career there are websites dedicated to finding technical jobs where you have the opportunity to work from home full time. You may be able to find one based in the U.K.

    I wish you the best of luck in your recovery and hope things work out for you.
     
  6. Murph

    Murph :)

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    Is there a union where you work? Might be good to join it. Or otherwise, touch base with an employment lawyer. Some might do a free consultation. One thing I remember being told that really explained things to me: Hr don't work for you. They work for the company.

    But of course managers are human and they get tired of always being asked the same thing. So I rather suspect it's one of those things where extreme (and extremely painful) persistence pays off.

    Start putting things in writing, keeping a diary of each time you contact your manager, HR, etc. Let them know you're doing that. Eventually they will crack.

    If they do then fire you you then have evidence for a discrimination claim sitting right there.
     
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  7. arewenearlythereyet

    arewenearlythereyet

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    I would just like to add that it is worth checking your home insurance since there is often legal advice included. If you can't seek agreement with your employer on reasonable adaptations you can try and resolve the issue with them via the companies grievance procedures. This will also act as a permanent record for any future claim you may want to make.

    Good luck.
     
  8. KME

    KME

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    Mark, I’m glad Dr Shepherd has provided such good information for you. I was able to work for a few years at the beginning, and your experiences echo my own. I’m so sorry you’re going through this, it’s incredibly difficult.


    What I didn’t know at the time was that I should have been giving and getting everything in writing, and saving copies of everything in writing. I was shocked to find that all the conversations I had with my manager, HR, Occ Health might as well not have happened – any and all could be and were simply denied. So if you have a conversation, follow it up with an email referencing what was discussed, what was agreed and any concerns you have and blind cc it to your personal email account, i.e. the one you will still have access to if you are either unable to return to work due to CFS or if you are suddenly dismissed. If, for example, someone ignores your request for a meeting to discuss X, send an email so that you have a record that they had not yet met with you. Be completely professional and reasonable in all of your verbal and written communication.


    Consider seeing a very good ME specialist (someone the ME Association recommends rather than a psychiatrist) who is willing to write a detailed report specifying that you have a disability and what exact accommodations you need at this time, and that these may change. When your employer has been told, in writing, that you have a disability, they are in a very different situation.


    Download a copy of that information you mention on the website where they mention disability and working from home, and have it at home.


    Make detailed notes on each and every relevant conversation you have about this immediately after it/within a day, and keep these notes at home, not at work, again in case you are dismissed or unable to get to work due to illness. Note dates, times, who said what – be as exact as possible.


    When you go to a planned meeting, have a one-pager that you can give to them (keep a copy). State what you’ve tried, the result (e.g. relapse of CFS leaving you unable to work), and what you are physically able to try (e.g. working from home or reverting to your previous regime). (A lawyer will advise you better on this but this would be a simple version if you don’t want to go that route.)


    The other thing I wish I’d known is that sometimes, when you feel like you’re banging your head against a brick wall, you are. And sometimes one of the solutions you should consider is walking away. It's a bit like walking away from a relationship that you want to work, but have to admit is not working. You may reach a satisfactory outcome after it has been confirmed to them by a doctor and/or solicitor that you have a disability. But please, put your health first. They will not. They are not. They are worried about setting a precedent that they think could be abused by other employees – they are not worried about causing an irreversible deterioration in your health. Now, while that is not the only outcome, you might emerge from this intact, it is one outcome. It is the one I experienced. The physical, cognitive and emotional overexertion over time can have devastating consequences. I remember well all the figuring out of options, trying to communicate things differently – don’t underestimate the extra load this is placing on you. The full impact may not apparent until many months or even years down the line.


    Looking back now, I can see that I was simply never going to be in a situation in that job that was safe for my health. There was no good reason for this – just a lot of ignorance and incompetence and not grasping the reality of the situation. Again, in hindsight, I know that I should have walked away. This would have been incredibly difficult – it would have meant leaving a job that I loved, financial insecurity, likely lack of support from even family and friends who would have thought I was crazy to leave my job – but it is possible, just possible, that I would have remained at mild ME rather than deteriorating to severe, and that I could have got another job where they “got it”. Perhaps there are jobs in your field where they actually want people who work from home?


    I know it’s desperately difficult, but do be realistic about their concerns and yours. You are clearly a competent and conscientious worker, and you’re professional and reasonable in your dealings with them – these are good things, but they are also why they can get you to do things that you know are beyond you CFS-wise. I know how important this job must be to you, but remember that again, that gives them some leverage. Those good qualities are also what will get you another job.


    Put your health first and put everything in writing. And pull the plug if you need to.


    Wishing you the very best of luck.
     
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  9. KME

    KME

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    Also very important to keep every shred of evidence of your competence. Literally note down every positive comment you get about your work, from whom, with date and time, and send a copy of any positive email/performance review to your personal email account (a non-work account). If you get any negative feedback, deal with it really professionally and positively and completely and keep a note of it. If you're criticised unfairly, e.g. where your job competence is conflated with your physical competence due to CFS, address it directly, in writing, while making it clear that you're open to all fair feedback, keen to learn/grow/optimise your skillset, yada yada.
     
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  10. markielock

    markielock staying independent, one day at a time

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    Hi everyone, I am very sorry for the delay in thanking all of you for your input. It has been invaluable and I am grateful that you put in the time to offer advice :).

    Small update: Unfortunately, I have rapidly become housebound and have been signed off work for nearly a month now. Because my health is still continuing to decline, I have decided to resign from the position. Although it's been great having some part time work over the last year and a half, it has always been a struggle against my symptoms and, mainly due to the absence policy, it was never going to last (at least in the way my employer wanted it to).

    I feel this is best decision because it is an incompatible environment for me, it is not clear when I will reach my better base line of health again and going back to work would only continue this cycle that has caused such a severe relapse in the first place.

    However, I am feeling good about the future, I know what doesn't work now and I know I need a part time telecommuting job or start my own location independent business. As my health improves, I shall be chipping away at making this a reality. I feel motivated and like I am on the right path :).

    Thanks,

    Mark
     
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  11. NelliePledge

    NelliePledge plodder

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    If you resign because of their inflexibility you may have a case of constructive dismissal against them. In which case you might be able to get compensation if you go to tribunal. Worth getting legal advice. Also as an employer of over 5000 people they really ought to be operating legally if there is a union talk to them they should be supporting people in your situation.
     
  12. markielock

    markielock staying independent, one day at a time

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    @NelliePledge: You're right, perhaps it is best that I consult the Union and get some legal advice before I make it official. It's hard doing all this when you feel so ill. It's backwards that sick people have to work harder :(.
     
  13. arewenearlythereyet

    arewenearlythereyet

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    You should maybe suggest a compromise agreement before handing your notice in? Might be worth a try?
     
  14. arewenearlythereyet

    arewenearlythereyet

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    pM me if you want some advice .....I have a similar experience to you and will try and help if I can
     
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  15. NelliePledge

    NelliePledge plodder

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    Hi @markielock. I hope the union can help. I was going to just give up and put in for early reduced pension retirement last year friends persuaded me to carry on and talk to the union. I wasn't ready to retire so glad work have given me an interesting project ive been doing part time. Getting ready to retire in 12 months time and feel like I've made sure work have done what they should to keep me in work.
    I hope your employer can be made to understand that the flexibility you need is a reasonable adjustment they should and can easily put into practice. As a reasonable adjustment it is individual to your needs not changing their overall HR policy for employees in general.
    Hope it works out for you
     
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  16. markielock

    markielock staying independent, one day at a time

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    Hi guys,

    Thank you for your continued support and help. You have made me think seriously about talking it out with HR before I make any decisions. However, I'm honestly not sure how mentally, physically and emotionally able I am to deal with it. I've been primarily housebound and isolated the last month and a bit because I am too ill to exert myself. I also have developed a really stupid anxiety surrounding the amount of time I've been off work; that it looks 'clear' to my employer that I am obviously unfit to work at all and have legitimised their ignorant "you shouldn't be working from home if you're sick" argument, which just makes me feel distressed.

    As I said, I am hopeful for the future and I am excited about what I'm planning to work on when I'm a bit healthier. However, the financial uncertainty and general anxiety of resigning from a job and facing unemployment/financial insecurity is distressing all the same.

    However, thank you and I shall let you know how things go :)
     
  17. NelliePledge

    NelliePledge plodder

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    yes keep us posted M but please get help on this before resigning
     

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