I've only just joined AfME after being diagnosed with CFS (finally) in May of this year. I'm getting back on track having had it since 2004 (I have a history of Anaemia/Iron Deficiency since 1997 due to near-fatal Salmonella, it was assumed my fatigue was due to this until I had hospital tests during 05), but I hadn't bargained on the hurdles you have to jump as you start to recover. Work took me off down their Capability Procedure route at the same time as the diagnosis and I'm trying to get the CFS under control, so far so good, whilst trying to keep my job!
I'd love to hear about other people's experiences in the workplace and how they coped with employers thinking that reasonable adjustments will cure the condition? Also interested in hearing about 'creative and proactive' adjustments in the workplace, as per September's InterAction. So far I've asked them for a rest area, a footrest at my desk (for leg muscle fatigue) and reduced hours. They initially refused my rest area so I asked my GP to back me up and now have something in place, although they want to monitor it's use. It seems a bit of a shame that employers are not more helpful at times like these, and I work in the public sector where a greater level of so-called understanding is much publicised?
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COMMENTS
Re: Employers and reasonable adjustments
I'm not sure it will be too useful to you but I was in a similar situation to you about 12 years ago. If I quickly relate what happened to me it may or may not help you to weigh up your options more clearly.
I was diagnosed around 1992 and told my employers, an American oil company, that I would try to start working smart rather than working hard, as I had been doing, to see if that would alleviate the fatigue and the regular viral infections I contracted. The diagnosing doctor suggested that I should stop work altogether but I thought I could control the symptoms by easing back. As it turned out I wasn't smart enough to fully master the 'work smart' thing and I continued to work just as hard. I've learned that the conscientious and perfectionist traits are extremely common "failings" in ME people. Anyway I continued to work until I physically had to stop. I took 4 months off work and rested. In retrospect this turned out to be as useless as continuing to work. When I returned to work, the company, to their credit, organised a completely new job for me starting part time and building up to full time over a few months. This was so successful that they promoted me into an key managerial role after about a year. With hindsight I should have turned this down but with regular major redundancies I was afraid to. So I continued working at the higher more stressful level and within a year I ended up a good bit worse than I had been when I had to stop work the first time. During that time a lot of adjustments had been made. I had a bench that I could lie down on regularly and I stayed in digs close to work so that travelling was reduced. However eventually I became so bad that I was advised by the company doctor to stop work altogether, which I did. I have not worked since then and despite trying every therapy invented by man and beast over the last twelve years I have not recovered my health. Pacing and CBT are the only things that have helped.
I am not suggesting you stop work. My situation ie a private company, who responded really well to my illness and still helps me, is probably very different from the public sector. All I am saying is that in retrospect I wish I had taken the doctor's (a CFS consultant) advice in 1992. I would be skint now but hopefully with the 'pacing' would have been capable of recovering a lot more of my former health.
Hope this helps but somehow am not sure that it will.
I was diagnosed around 1992 and told my employers, an American oil company, that I would try to start working smart rather than working hard, as I had been doing, to see if that would alleviate the fatigue and the regular viral infections I contracted. The diagnosing doctor suggested that I should stop work altogether but I thought I could control the symptoms by easing back. As it turned out I wasn't smart enough to fully master the 'work smart' thing and I continued to work just as hard. I've learned that the conscientious and perfectionist traits are extremely common "failings" in ME people. Anyway I continued to work until I physically had to stop. I took 4 months off work and rested. In retrospect this turned out to be as useless as continuing to work. When I returned to work, the company, to their credit, organised a completely new job for me starting part time and building up to full time over a few months. This was so successful that they promoted me into an key managerial role after about a year. With hindsight I should have turned this down but with regular major redundancies I was afraid to. So I continued working at the higher more stressful level and within a year I ended up a good bit worse than I had been when I had to stop work the first time. During that time a lot of adjustments had been made. I had a bench that I could lie down on regularly and I stayed in digs close to work so that travelling was reduced. However eventually I became so bad that I was advised by the company doctor to stop work altogether, which I did. I have not worked since then and despite trying every therapy invented by man and beast over the last twelve years I have not recovered my health. Pacing and CBT are the only things that have helped.
I am not suggesting you stop work. My situation ie a private company, who responded really well to my illness and still helps me, is probably very different from the public sector. All I am saying is that in retrospect I wish I had taken the doctor's (a CFS consultant) advice in 1992. I would be skint now but hopefully with the 'pacing' would have been capable of recovering a lot more of my former health.
Hope this helps but somehow am not sure that it will.
