Published in InterAction 71, Spring 2010
Since M.E. is a hugely debilitating illness, many of us inevitably find ourselves having to give up work, says Diane Shortland. The majority of us do so begrudgingly and hope to return to employment when able. It can feel like a big step with such a fluctuating illness to contend with…
The level of support from employers can vary greatly, as reader experiences indicate. Angela says, “My employers were amazing, very supportive. Even now I’ve left I’m always invited to all events.” Deborah too: “My employers were very good. They kept in touch and after six months, although it was apparent I was not well enough to return to work, they still kept a position open for me for another year.”
On the other hand, however, Karen found: “Mine just wanted me to hurry up and leave so they could get someone else in my place.”
Laura says, “My manager has been supportive as much as she can but generally I’m just left to get on with it. Sadly all my colleagues think I no longer work there.”
On attempting to return to work Joanne felt: “There should have been an earlier referral to occupational health rather than them waiting for me to return to work and then referring me. Surely a member of staff suffering a disability – who wishes to return to work and try and resume their old role – should be supported as much as possible by their employer?”
Putting health first
Trying to hold down a job, as well as cope with an array of awful symptoms, can be very stressful. Often in the initial stages of illness, a point is reached where a decision has to be made to give up work and concentrate solely on getting better. Accepting the inevitable can be very hard. However, as Jackie says, “Once this decision was made I felt a great weight lifted as I wasn’t using up energy on trying to recover to return to my job.”
As well as coming to terms with our careers being put on hold, we often have to deal with the stigma associated with being ‘off sick’. Sally writes: “My personnel officer visited me at home after six months and, when I asked what would happen if I was still unable to return to work after six months of half pay, his attitude changed and he became quite shirty.
“My union rep asked him about this and he said he thought I was swinging the leg and just wanted some time off work as I looked so well and didn’t seem to be ill. I wish I had complained about this but I was too ill at the time.”
There are also the financial implications of giving up work, as Michelle discovered. “It was really hard, having to give up my career as a teacher, but in truth after two and a half years I was just plain relieved in the end when I had jumped through all the occupational health hoops and was medically retired.
“But this was a short-lived relief because I then found that I was excluded from an ‘enhanced’ pension because I could not prove that I was ‘permanently incapacitated.’ So now I only receive half the pension I should do, and would do, if I had been ill with any other illness.”
Kevin’s last three jobs have all led to the sack after periods of part- and fulltime illness. “In a sense I can’t blame them – the job wasn’t being done – but none appeared interested/ sympathetic. One was within a disability organisation!”
Rights and entitlements
So what can we expect from employers? How should we be treated?
In 1995 the Disability Discrimination Act (DDA) was introduced to end the discrimination many disabled people experienced in all areas of living, one of which was employment.
Since October 2004, apart from the armed forces, all employment, regardless of how large or small, comes under the scope of the DDA. This covers any disability which has a long-term, adverse effect upon the ability to carry out normal day-to-day activities.
The Government website has a wealth of information on the entitlements of disabled people in the workplace. It discusses at length the duty your employer has in making ‘reasonable adjustments’ to ensure you are not put at a disadvantage by employment arrangements or physical features of the workplace. An employer can only treat you less favourably if the ‘problem’ cannot be overcome by these ‘reasonable adjustments.’ You can also check out Focus on Disability and AdviceGuide.
Edwina worked for a large company as a human resources manager. She says: “I would try to amend a person’s work to enable a return, with things like shortening hours, changing days and even changing their positions if needed. The only way anyone would be dismissed would be if we had full doctor’s reports that there would be no return to work in the long term and after much consultation with the employee.”
Even within the realms of this Act, though, certain employers can be more supportive than others. The ‘two ticks’ disability symbol on job adverts should be a good indication of employers who are particularly positive towards employing and retaining disabled people. With them, you are guaranteed an interview if you meet the minimum requirements for the vacancy.
Benefits and work
Employment and Support Allowance (ESA) has replaced Incapacity Benefit for new claimants since 27 October 2008. In theory, it was introduced to give disabled people financial help and support so that they can do appropriate work if able. It involves a Work Capability Assessment that aims to look at what you can do, rather than what you cannot, and to identify any health-related support you may need.
Action for M.E. has a factsheet on ESA for anyone who is thinking of applying. Download it from our website or contact our Welfare Rights Adviser, Sarah Lawrence. Sarah’s contact details and the opening hours of the Welfare Rights helpline are given in the inside front cover of this magazine.
It is possible on both Incapacity Benefit and ESA to do what is called ‘Permitted Work’ (PW). This allows you to test your own capacity for doing some work, and perhaps see how your health holds up, before taking a giant step.
There are rules of what work you can do and for how many hours, so it is advisable to check.
Finding work again
With a history of bad health and a huge gap on your CV, finding work again can seem like a daunting task. The Jobcentre is a good place to start. If you have a disability that affects the kind of work that you can do, you are eligible to join a range of different schemes.
At the Jobcentre you will be allocated a Disability Employment Adviser (DEA) who will assess your abilities and the kind of work that will suit you. They can also help if you are already in work and experiencing difficulties that relate to your disability.
There are also independent organisations and charities that can provide opportunities. Shaw Trust provides pre-work training courses and financial and careers advice, and will also work closely with you and your employer when work has been found. You can complete a form on their website and be contacted for an informal chat.
Yes2work offers general benefit advice and help with CV preparation. The Disabled Workers Cooperative (www. disabledworkers.org.uk) has a disabled workers database and e-jobs portal. The website also has an online community for sharing disability and employment issues.
Think outside the box
Working from home is becoming an increasing trend with employers keen to cut down on travelling and office space; this can suit people with M.E. who may struggle to actually get to work.
Liz found that “the best possible solution was to work for myself, so I started my own business and 10 years on I am still finding it the best way to live with the illness.”
Sarah learned the hard way: “I was given the opportunity by a friend to office sit. No pay was involved and therefore no pressure to ‘perform’. Every effort was made to make the office sitting as M.E. friendly as possible. We thought we had organised it perfectly. Unfortunately I was enjoying ‘working’ so much that I ignored the increase in symptom severity.“
Sadly Sarah suffered a relapse and found it hard to deal with “the grief of being faced with my own limitations. No matter how understanding an employer is, and no matter how much I want to be employed, my body is just not capable of obeying my spirit.”
Bridging the gap
If employment is outside your reach, there are other ways of filling the gap that work would usually occupy. Distance learning has made a significant difference to my life. I am in the midst of my first year of a Masters degree. I am finding the workload and deadlines hard going and stressful, but for the first time in 11 years I feel I am doing something constructive for my well future. A good place to start, if you are thinking about studying, is Hotcourses.
Doing voluntary work is another possible avenue. It’s a great way of experiencing a working environment, mixing with people, building confidence and gradually moving back into work. As it’s voluntary, the pressure is lifted whilst you are finding your feet. See DirectGov or Do-It which offers over a million nationwide opportunities to volunteer.
About the author
Diane Shortland is 34, lives in Lincolnshire and has had M.E. for 11 years. She is studying for an MA in Journalism via distance learning. She is a beach bum at heart, and loves spending her free time doing Tai Chi and watching sunsets. She dreams of owning a VW campervan and travelling round Italy with her friends.
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