Myalgic Encephalomyelitis
in the Workplace





During my last couple of years of high school I was always unwell. I would be at the GP every six weeks or so with tonsillitis and was given antibiotics each time. It happened so often that it got to the stage I didn’t even have time off school for it once I had the antibiotics.

After high school I signed up at a local sixth form college to do A levels in Chemistry, Biology and Maths with the aim of doing medicine at university, but from very early on getting to college each day was a real battle. If I made it to college I would fall asleep as soon as I got home again, but I would regularly not be able to get out of bed, which wasn’t like me even as a teenager. I sometimes left the house to go and get the bus but didn’t even make it to the bus stop; I was that tired and in such pain I had to turn back.

I was again regularly at the doctor’s and was told many different things it could be. Migraines was their first diagnosis, but when the meds they gave me made no difference the GP told my mum (not me, despite me being in the room and being 17) I had depression and that all the physical symptoms I was experiencing were just down to that. Headaches, joint and muscle pain, regularly vomiting after eating, exhaustion that didn’t get better no matter how much I slept. So the GP put me on Prozac. This really didn’t help and made me feel really low and really sick for several hours after taking it. I was sick every day whilst taking it and in the end we went back to the GP, who told me to stop taking it (not to wean off it but to just stop, which was awful and turned me into an angry monster for several weeks, which is not like me at all).

A few months later I seemed to be getting worse: I hadn’t made it into college for a couple of weeks; every movement was agony; I had a constant debilitating headache that was worse if I was in a bright or loud room. I was walking around like a little old lady and my mum insisted we went back to the doctor’s. This time they were concerned I had meningitis and sent me to hospital. After a few days in hospital and lots of tests they decided I had a severe virus, possibly even viral meningitis, but had decided not to put me through the lumbar puncture as I was in so much pain and it wasn’t going to make any difference to the treatment they gave me.

When months later I was still no better and no longer left the house and rarely got out of bed at all, the GP diagnosed post-viral syndrome, and eventually referred me to a specialist who said it was Myalgic Encephalomyelitis and prescribed amitriptyline and a graded exercise programme which didn’t work; each time I would get to a certain point and then relapse. Persevering with this meant that I wasn’t well enough to work for a long time. I was housebound for several years and only saw any improvement when we agreed the specialist programme wasn’t working for me and that I should stop it.

Once I had taken control of it myself and used how I felt to decide how much I did on a given day I very slowly started to improve.

I had been diagnosed for around seven or eight years before I was finally well enough to consider doing something other than just getting washed, dressed and fed, and staying awake for the full day. I had spent a lot of time online and had gained some good IT skills so I decided to try to get a qualification: a local adult learning centre offered the European Computer Driving Licence and I could do it at my own pace. Once I had finished the course the manager of the adult learning centre asked if I fancied doing some volunteer work with them. I took them up on this and slowly worked up to doing two days a week at the centre. This often meant that I did very little on the other days but I was so proud of myself for achieving that, I didn’t mind.

A few months later a temporary part-time admin job with a linked centre which focused on getting NVQs for people who had recently left school became available. My manager encouraged me to apply and I was successful. I worked two and a half days a week and I had to work very hard at pacing myself so that I could manage it, but by this stage I had been ill for so long that I could do this quite well. I moved on from here to another temp job and then managed to get a permanent position for three days a week. I would sleep a lot on the days I wasn’t in work and you could guarantee that every time I was off work on annual leave I would be ill for the whole time I was off, almost as if once I stopped my body gave in.

I have continued to work in various jobs for this same organisation now for over twelve years, and my sickness record is very good. Eventually they took my tonsils out, as that seemed to be my point of weakness and would always be where I got the infection. For a while this helped but now I just get the infections lower down my throat and the GP can’t see them. However, I have pretty much given up on going to them anyway unless it’s something that I don’t think they will just pass off as being my M.E. None of the jobs I have done have challenged me too much and so even on a bad day I can get by and do what I need to do. It’s disappointing to know I am capable of so much more and I do often wonder what I would be doing now if I hadn’t got ill, but I don’t push it as I wouldn’t want to let people down by doing a job that I can’t do on a bad day. This has been even more important to me since recently moving into a new job supporting vulnerable families, as I really don’t want to let them down. When starting out in this team I worked for local government and this has now transferred over to the NHS, which gives me peace of mind knowing that they would be more understanding and have a better sickness policy if I did have a major relapse than a small company would. The only time I have worked more hours is when I was pregnant with my son. I was offered a secondment and it meant my maternity pay would be much better. During my pregnancy and whilst I was breastfeeding is the best I have ever felt in my adult life and so I did six months of full-time work, but when I went back after my maternity leave I returned to just doing three days a week, and to give me more chance to recover they now aren’t three consecutive days, as being a parent can make you tired enough without being the parent with M.E.

I always think it is really difficult to give people advice about M.E. as nobody with M.E. seems to have it exactly the same as anyone else and I am aware I have been extremely lucky to be able to get back to some form of “normality”, although whilst most definitely suffering more than most, but these are the things I would say about working with M.E.:

  • Be honest with your employer – This can be difficult as you feel like it will make you less likely to get the job, but if you feel you are in a position where you could struggle then they are more likely to be supportive of that if they have been made aware in advance. This is definitely true with big organisations like local government and the NHS.
    There are some useful organisations, such as ASTRiiD, which is a charity connecting businesses with professionals who have long term health problems but who still have many skills to offer employers. Citizens Advice has a wide range of information about work related rights, along with providing guidance on problem solving.
  • Go slowly – Don’t expect to be able to go into working full time from not working. I have always slowly increased hours on a temp basis before accepting a permanent contract as I need to know for myself that I can do it.
  • Be willing to forgo a social life for a while – Whenever I have changed roles or increased hours I have done it knowing I am going to suffer for a while and will go back to not being able to do as much outside work until I’m used to it. Again, I’m very lucky as I have always been able to either get used to the extra hours or slowly add extra things in or drop back down to my old hours.
  • Don’t aim too high – I’ve done lots of admin jobs and it wasn’t my dream at all but I’m good at it and it brings some money in. It has taken me twelve years to finally get to doing something that I feel happy to be doing as I always wanted to do something that makes a difference, but I am fully accepting of the fact that if this gets too much for me I can always go back to doing admin.
  • Working from home – During the current Covid-19 pandemic I have been working from home; this is not something I’ve ever been able to do before as my roles have always had a receptionist element as well as the admin. I have found this to be really good for my M.E. and I am hoping it is something I will be allowed to continue at least some of the time when things go back to being more normal. The actual working part isn’t the most difficult part for me, it’s the travelling, the traffic at the end of the day when you just want to be at home, the organising food in advance when I’m struggling and don’t want to get up early enough to sort it out. All those little bits that you don’t think of when you are considering getting a job that I find hard; also, the noise and social side of being in an office can be really hard when you are struggling and so if you can get a job where you are able to book in to work from home on days where you might be struggling, this could really help. Frances Pallett has written more about Working from Home with Myalgic Encephalomyelitis.
  • Annual leave – I learnt very early on not to think about my annual leave as everyone else in my office does as a time to fill with holidays, days out etc. I book it evenly spaced throughout the year to use as recovery. If you know you only have a few more weeks before you can have a week to recuperate, it seems easier somehow.
  • Get support – I’ve been lucky enough not to ever have any problems through my working life with discrimination or issues from being off sick, but I do think it is worth knowing about what to do if you do have those problems. Make sure you know your rights; join a union if you can so you have someone to fight your corner, as the chances are if you need it you won’t be well enough to do it yourself.
  • Listen to your body – Don’t wait for the relapse; if you are struggling, do something about it sooner rather than later.

I don’t know where I would have been in the early days of my M.E. journey without the M.E. Support website and some of the wonderful people on there, like Louise, who always had time to listen, support and offer advice. If I can do the same for any of you, then please feel free to get in touch; my e-mail address is at the top of this article. Lastly, if you are considering becoming self-employed, please take a moment to read Working with Chronic Illness by Beckie Melvin.