Feel alone.

[Onlyme2812]

Hello everyone. I'm currently having a tough time with my employers. I recently got diagnosed with cfs (this year August) and been off work for nearly 6 months now. I feel pressured by work to return although i'm trying to still understand my condition. I have seen occupational health many times and they seem to reassure me and then I have a sickness meeting with my manager and union and they put me down in the dumps again. My employers are making no effort to understand my condition and lack empathy, they'd rather get rid of me than make adjustments in work. I'm holding on to my job with a thin thread. There are other people with cfs who work at this place but different sectors but my manager is not making any effort to look into anything herself (e.g. That some people with cfs can work but need adjustments). I feel so alone and don't feel like I have anywhere to turn to. I don't know what to do.

[Antony_M]

Hi Onlyme,

ME/CFS is tricky with employers especially given the spectrum to which it affects different individuals and the variety of misconceptions and stigma attached to it. There may well be other people in the organisation with the same diagnosis but materially different needs. I've been through the same process and HR represent the employer's interests and will try to push for what they want which maybe an individual who works full time with minimal adjustments.

Fortunately, it is very likely that you have a disability which is recognised as a protected characteristic under the Equality Act 2010 - they are required to make reasonable adjustments to enable you to work.

I recently changed line manager and to my amazement, one of the first things he did was to contact one of the two leading ME charities and discussed with them the nature of the condition, how it is likely to affect me and what employers can do to help. This was one of the best things that anyone has done and it could have saved a lot of pain had it happened sooner.

Typical adjustments include reduced or compressed hours (which may avoid the rush hour), flexibility to spread work over diferent days or to leave early and make the hours up later in the week, working from home, ground floor desk near the door, as well as any equipment e.g. I have trouble with eyesight and work better with a larger or double computer screen. You may find that there are other people who have similar adaptions but may not necessarily be disabled and it may be due to their influence or family circumstances - your employer is on rocky ground if they discriminate against you by not giving you what non disabled people have.

Getting to work may be a challenge. Public transport may or may not be an option and could leave you exhausted, all the more reason to work part-time if you can. If you are unable to use public transport or drive to get to work, you maybe able to get an Access to Work grant from the DWP which will pay towards taxi fares. You'll need to explain your situation though they do seem to understand that for someone with ME, they can often either manage the journey or the work itself but not necessarily both on the same day and you may need a taxi.

Your GP can provide a letter for your employer stating how your condition affects you and the adaptations that you need. Most surgeries would charge £25-30 for this and you'd need to go see your GP to discuss.

If you return to work you are likely to have a trial period and a phased return. The clearer you can be with your employer over your requirements and the more evidence that you can provide the better. If you stay off sick indefinitely, you will eventually run out of time and your employer can start disciplinary proceedings to dismiss you. Try and find a charity in your area that advises people with disabilities and reasonable adjustments, they may also be able to help with benefits that you may be entitled to.

I think you need to approach your employer with proposals on how you could return and the adjustments that you need to do you job. If you simply go back on the same terms as before you are likely to have a relapse as you find it unsustainable.

I hope this helps, longest reply ever. My first year of going back to work was hell and my condition hasn't gotten better but I now have adjustments and adaptations in place which mean I no longer dread going to work.

Antony

[Onlyme2812 in reply to Antony_M]

Hi Antony, thank you soooo much for replying and the information! You are right about HR and both my manager and HR keep making it obvious they would rather have me out than make adjustments. They have been quite aggressive towards me about this when I am keen to come back to work but i NEED adjustments for me to do that but they are very reluctant to do that. I do have various reports from occupational health saying I need adjustments and have advised my manager to treat it like a disability and still they are not taking this on board. They have been told by occi health and my union it is covered by the equality act and they seem to be ignoring that fact. They seem to be trying their own tactics to try oust me out the job rather than taking a supportive approach.

I am nurse on a busy ward so it will be hard to have adjustments to the degree I would like but I am considering reducing my hours considerably although financially I am unsure if I will cope. The occupational health doctor seems to have some knowledge about CFS and has told me he thinks I have a mild case of CFS which the prospects of me recovering and getting back to my normal routine is looking likely. I have yet to see the CFS specialist and i really hope he will say the same!

Your manager seems so lovely and wish mine would do her research on the condition too rather than in the meetings she keeps saying she knows nothing about the condition and keeps asking me about it. I cannot find the right words to explain it and I myself am no expert on CFS either as I am newly diagnosed.

[Antony_M in reply to Onlyme2812]

You're welcome. Like many on here I can be a bit slow to respond, I often spend my days off asleep. It's my birthday this weekend and I saw the new Blade Runner movie last night, it finished around midnight.

[Onlyme2812 in reply to Antony_M]

Happy birthday! I hope you had a fab one