Myalgic Encephalomyelitis
in the Workplace

by Yvonne Pace




I have had M.E. since I was about 14, with varying degrees of severity. Due to ill health I have been a secretary (mostly on a temporary basis), a primary school teacher, and am now an Information Engineer (I work with computers supporting applications across Europe).

During the last 21 years I have met with scepticism and disbelief, but with my family's help have tried to live as normal a life as possible. I have never been one of the worst cases; maybe I never pushed too far at the beginning but I have had to give up work on several occasions, for 6-12 months, and simply rest until I felt I was well enough, and broke enough in one case, to try work again. I have also found that university life suited me and M.E. Most students don't have an eight-hour day schedule, so naps are allowed. Frequent stops for tea and biscuits also get you through the day, and if it gets too much no one minds too much if you miss some of the lectures, depending on the subject!

The details of your local support group can be found on the M.E. Organisations page. However, I personally have never used any support groups; I guess I was lucky with my family. But although I appear to my colleagues to be 'normal' I am all too aware of the days I am pushing that barrier too far and just hope that it doesn't break and I fall into the abyss again.

If there is any trick to working with M.E. it is this. Balance. If you want to work, to have some independence from family and a perceived 'life of your own' then you need to work out what you can do and what you will have to give up.

Often when I am feeling well, I start to forget the restrictions of Balance and start to overdo it. I go nightclubbing with friends or just go to a pub where I stand up most of the evening, or walk about the town from one pub to another at night. This usually means most of the next day in bed or resting in the house, semi-comatose, don't talk or I'm liable to snap! Then the next few days, even if they are workdays, are what I would term delicate days! No overt exertion is allowed! Take the car everywhere! Ring downstairs, don't walk at work, etc. This as you can imagine does curtail your social life a bit and can make working difficult at times. At worst the only recourse is to take time off sick to try and get the battery recharged again.

I find the worst symptoms of M.E. are the mental ones. The exhaustion and muscle aches, creepy crawly feelings and nausea I take for granted to a certain extent. Work is rarely sympathetic to these physical symptoms. Most of your colleagues will equally claim that they have the same ones, and if any of your colleagues have small children they will claim you must have them too, especially if you mention broken nights! But they don't get time off for bringing up small children, so why should you with the same perceived symptoms? Trying to explain when the symptoms of M.E. are so varied and common is almost self-defeating. If you then mention the mental symptoms, loss of concentration, not being able to find the right word and the bad short-term memory, you will get the same reaction and no more sympathy. If you collapsed at the desk, then you will get more sympathy and some understanding, but it is not advisable to push yourself until you get to that stage!

If you feel you need a week or two off work to rest again, and M.E. sufferers can usually tell when this is needed, sign yourself off with flu for the first week; it might be enough of a rest anyway. For more than one week you need a doctor’s note; he/she doesn't even have to lie as by this time you will probably have been so weakened that you will have caught a cold or flu bug anyway! If you haven’t got any secondary viruses, then being signed off with M.E. will at least show your colleagues that the medical profession recognises the condition even if they do not!

If you have got a job, it is best to find one that allows you to have breaks, both physical and mental breaks, but you shouldn't be doing a physically taxing job anyway. Some excuses to hide your breaks are chat to your colleagues, go and make the tea, go to the toilet or read your email. Constant mental activity can be as fatiguing as physical activity and the five-minute breaks these excuses allow help to give brief respites. If you're looking for work, ASTRiiD is s charity connecting businesses with professionals who have long term health problems but who still have many skills to offer employers.

I have found it best to work up slowly into the mental gymnastics of work. Going straight back into full-time work after a relapse is foolhardy. The likely result is another relapse. Temp work or part-time work is a much better option. Of course if you are a teacher or in another profession which needs a lot of work outside office hours, then maybe a change of profession is a more sensible approach, at least until you are feeling a lot better and can cope with those stresses.

My first job after the last bad relapse was as a temp receptionist. All I had to do was answer the phone for a small company, and the lines were not that busy either. Doing this and almost nothing else for a few weeks eased me back into the routine of work. I was exhausted every night though and getting up was not easy. Weekends were catch-up rest time and friends were put on hold! I remember walking around the local supermarket using the trolley not just to hold my food, but also to support most of my weight, especially at the checkouts. I was living on my own at this time so didn't have my family on tap to help out. Besides, I wanted to be independent. About six months later I was still tired, but I was working and earning money, less than teaching pay but better than nothing. I knew I couldn't go back to teaching though, at least not for year or so.

If you are working and have M.E., then it is best to know how much time off you can have without losing your job. A lot can depend on your employer and your contract should set out their specific terms related to absences due to ill health, but in general the following rules apply:

• Up to 1 week off – Self-certification of reasons for absence. Full pay or first 3 days off for statutory sick pay are unpaid, so your employer has usually picked up this cost.

• 1 week to 3 months – Doctor’s note and full pay.

• 3 to 6 months – Doctor’s note and half pay unless this is less than the amount given for Statutory Sick Pay. (Some companies may continue to pay you on full salary or on a sliding scale downwards over this time, depending on your contract.)

• After 6 months – If you are still ill and cannot give a time when you will be able to be back at work, the company may give you notice, or continue to pay you according to your contract at a percentage of your salary or retain you with no pay at all. You will also be eligible for Incapacity Benefit (if you have paid enough National Insurance whilst working, unless you went ill before the age of 20). For more information on incapacity benefit please contact your local Benefits Agency.

• 6 to 12 months – It is unlikely that any company will continue to support you over this length of time, certainly not on salary. However, exceptions do occur so it can be worth asking your manager for advice.

Should you feel that your company has dismissed you unfairly, then the first stop should be your local Citizens Advice office. They will be able to advise you on the legal ramifications of taking your company to court for lost wages etc. This could be a time consuming and frustrating exercise and will not help your M.E. at all, with all the extra stress it will cause. You should also contact them if you feel that you have been discriminated against in other ways because of your ill health. Maybe you have been passed over for promotion or sidelined into the less exciting aspects of your work despite your skills and experience. This may be due to the time you have had to have off because of the M.E.; your employers may not feel that they can give you that kind of responsibility any longer, as you are not always there. These accusations are valid from the employers’ perspective and depressing to the employee’s. Quite often the employee will leave this environment as they no longer feel valued and have lost all job satisfaction.

If you are registered disabled or can prove you meet the legal definition of disability then you have more legal backing, as under the Equality Act 2010 it is illegal to discriminate against disabled people in employment in firms of 15 or more employees. An employer must not unreasonably refuse you a job because you are disabled, and must make any reasonable changes to the workplace so that you can do your job. A good starting point to understand this Act is to be found on the Citizens Advice website.

In either case, you can take your grievance to an Employment Tribunal for a judgment on your situation. This must be done within three months of your dismissal from work. If you are dismissed because your employer says you are incapable of doing the work you were hired to do due to ill health such as M.E., then you may be covered under the Disability Discrimination Act but you will need to see a qualified legal representative as soon as possible. The Law Centres Network, Trade Union Congress or Disability Law Service should be able to help you or point you in the right direction for more specialised legal assistance, and to advise you on what steps to take next.

Lastly, the Business Disability Forum has produced a useful briefing paper titled Non-visible disabilities. This will be useful for anyone to consult who has to negotiate changes in their hours or in their contract with the employers. This paper can be downloaded or ordered (at a small charge) from their website.

Whatever you do, good luck and try to find that magic Balance! But at the end of the day, if you are not able to work DO NOT FEEL GUILTY! You know your limitations more than anyone else, so listen to your body. Please contact me at the address above if you need any other advice about working with M.E.

You know your limitations more than anyone else, so listen to your body. Please contact me at the address above if you need any other advice about working with M.E.


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