ME/CFS facts to help with employment

[Kitty]

Maybe my situation was different as it was so long ago but the whole fatigue thing was a big problem for me and a real barrier to being taken seriously. Comparing to MS or cancer when those aren't the diagnosis you have may not be helpful.

I just meant comparing the fatigue to that of cancer and MS. It was really helpful when speaking to those I didn't work with directly, as people often have friends, family, or neighbours who've been affected. It was unnecessary for those around me, of course, as they could see my face going grey as the day progressed!

My companies OT was all about the generics of fatigue clinics and sleep hygiene and do all those and that's you fixed.

I just told them I was applying for Access to Work funding for an independent assessment. The OT read up beforehand, and by the time we met, she had a really good grasp – she was already familiar with other fatiguing conditions, and acted as a really effective advocate.

She also encouraged me to use my colleagues' understanding of my condition, as she realised they could see better than I could when I was close to hitting the wall. As a result, my manager suggested a couple of times that I bring forward a break by a week (previously he'd spotted that I was desperate for a rest, but felt uncomfortable about saying so), and other people offered to run 'errands' for me (small things, such as asking whether I needed anything copying whilst they were going to the machine). I realised that people actually wanted to be more supportive, but didn't want to make me feel as I was being undermined or patronised.

The cognitive & all.other issues were then perceived as secondary to fatigue when, for me at least, it's the other way around.

Mine are quite tied up with fatigue, in truth – my brain functions much better and I have far fewer sensory issues when well rested!

 

[Invisible Woman]

That sounds like a totally different situation from mine @Kitty. World's apart.

I don't know if Access to Work was even available to.me when I had to quit. There was no help, no advice, no one to turn to. No real capacity to find out either as I was too busy struggling to stay in work. No internet to speak of to look things up.

My colleagues & I were rarely together - I spent most of my time on client sites, sometimes alone, sometimes slotting in and out of teams onsite. So not your typical environment I guess. Very fast paced environment & the last thing I could have done was ask them to keep an eye on me. Bear in mind, I didn't have support and also didn't want to face any disciplinary action or undermine people's faith in my ability to do my job. That would have been career ending right there & I was hoping this was a temporary thing.

After I was forced to.stop work and met other pwME I know some people who found the work situation easier also had co morbidities that were well understood. They got a lot more support than people who "just" had ME.

The other thing i noticed later on when I met some other patients was the big difference between the public and private sector. Public sector workers with ME didn't generally seem to have quite such a hard time of it.

 

[Trish]

Public sector workers with ME didn't generally seem to have quite such a hard time of it.

Interesting. My experience in teaching was not good. Partly my own fault as I didn't want to make a fuss, though I did try to explain my limitations and needs to those allocating my classrooms and timetable.

I was only offered an occupational health assessment after over a decade of struggling to make my case to have things like having my desk in a staffroom within a resonable distance of the classrooms I taught in. It happened occasionally when it was convenient to arrange, but otherwise I was expected to traipse all over a large campus from lesson to lesson and nobody ever offered to go to the photocopier on a different floor from me. And I couldn't exactly ask someone else to take the hike from the staffroom along a long corridor down some stairs and along another long corridor to go to the loo for me!

The OH assessor was horrified at the distances and stairs I was expected to deal with, and changes were made but resented very much by the lab technician who was booted out of his separate office, and expected to have his desk in the room with the other lab technicians.

By then it was too late anyway, and I was ill health retired a year or 2 later.

 

[Invisible Woman]

Interesting. My experience in teaching was not good. Partly my own fault as I didn't want to make a fuss, though I did try to explain my limitations and needs to those allocating my classrooms and timetable.

Maybe I should have qualified what I said as others who had to give up work at the same time as me.

I think that makes a difference to how you would have been treated too.

I met quite a few teachers who had to stop work around the same time I did who did struggle for several months and then after a couple of assessments were allowed to retire on medical grounds.

They also had some union support.

Please understand I'm not trying to say anyone has had it easy but some have had a lot harder time than others. I know there are plenty who would have had a harder time than me.

In my industry, my employers were pretty outstanding when it came to employee benefits and so on. Except when you get diagnosed with ME and it's just boiled down to fatigue and a sudden loss of motivation to do your job.

Although adjustments would have been pretty hard to make in my job because I needed to visit client sites and give presentations and have technical meetings. Impossible when you get lost on the way to your local supermarket on a road you drive on every day.

 

[Hutan]

From Emerge's 'Lessons Learned from the Health and Wellbeing Survey of Australians Living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 2019':

https://www.emerge.org.au/Handlers/Download.ashx?IDMF=609ff625-4eb0-4f5f-b1af-782d08e2b61f

The most common support provided was flexibility including reduced work hours, late starts and flexible hours, and rostering considerations such as not being rostered on for two consecutive days (to allow for PEM recovery). Other supports included the ability to sit rather than stand while at work, opportunities to work from home, and longer and more frequent breaks. Some workplaces provided support from a disability employment service provider and occupational rehabilitation. At university, supports included longer exam times and extensions. Understanding and care were also noted as important supports.

 

[Trish]

Maybe I should have qualified what I said as others who had to give up work at the same time as me.

I have no idea when you had to stop work. I retired on ill health grounds in 2004. The union were very good, and the College paid for me to have a medical that supported my application for ill health retirement, and I got it without further problem.

The problem was the years I was wanting to keep working. That could have been made much more manageable if anyone had actually asked me how my illness affected me in detail and arranged an OH assessment. I guess I didn't want to demand all this, as I was scared they would decide it was easier to boot me out via redundancy or retirement. I was only part time (O.6), and therefore regarded as less important and easier to replace.

 

[Invisible Woman]

I have no idea when you had to stop work. I retired on ill health grounds in 2004. The union were very good, and the College paid for me to have a medical that supported my application for ill health retirement, and I got it without further problem.

It was the end of the 90s.

Initially HR were okay but any report or assessment on behalf of my employer was hostile and very much of the BPS view.

No unions.

I think most people do want to keep working. I definitely did and struggled on post diagnosis. My boss knew there was an issue & I was seeing a consultant but not the full extent of it. In my industry things move quite quickly so there was constant study just to maintain professional certification. Also of course, like many other people here, the main breadwinner in my household.

There was zero support & nothing I could really ask for because of the attitude towards ME at the time. If it had been another illness, like MS or cancer or rheumatoid arthritis etc, then there would have been some support available and possible adjustments considered. Possibly even a different career oath within the same company.

Then again if it was MS or something classed as permanent my mortgage insurance woukd have paid off the balance of my mortgage completely. That would have taken a lot of the stress out if it too. But no, because most people recover from ME.

Thanks to the stigma and lack of knowledge about ME, I had 1 consultant's support (& I was really lucky to have that). As far as everyone else was concerned I was tired and if I just went to bed at the right time, ate better, exercised a bit more....... Or even just worked through it until my "motivation" returned.

There was also a suggestion that perhaps a couple of weeks as an inpatient at a psychiatric facility might be helpful? At my company's expense.

All of this despite an excellent record in personnel assessments, of meeting targets, mentoring junior colleagues and being routinely sent to problem sites with clients who were known to be difficult. Counted for nothing once that ME label got slapped on.

And my employer's would have been one of the best ones in my industry. They were known for how well they treated their staff.

I'm saying all this not to hijack @arewenearlythereyet 's thread but also because I know that people still face what I went through and worse in the private sector.

 

[Trish]

I'm sorry, I wasn't suggesting other people don't want to keep working. I am sorry you had such a hard time, it sounds really awful for you. A lot of what you describe was very similar for me, but I certainly wouldn't want to suggest my experience was any harder than yours.

 

[Kitty]

I don't know if Access to Work was even available to.me when I had to quit. There was no help, no advice, no one to turn to. No real capacity to find out either as I was too busy struggling to stay in work. No internet to speak of to look things up.

AtW began in 1994, so it was pretty well established by the time I first applied in 1999 (I've used it three times). I needed an advocate as much as anything, and that's why I decided to try it. I was lucky in managing to find an OT who understood that she could have a wider role than just recommending an office chair, and I encouraged her to involve my manager and colleagues. I've always had trouble expressing myself verbally due to autism, and being exhausted didn't help much.

The OT said all the things for which I didn't have the mental clarity or the neutral, unemotional vocabulary. The latter is critical in employment issues – the stress needs to be on the fact that your struggle with disability is not a sign of personal or professional failure, but the result of barriers. I absolutely knew that, but couldn't express it.

The other thing i noticed later on when I met some other patients was the big difference between the public and private sector. Public sector workers with ME didn't generally seem to have quite such a hard time of it.

I worked for a hard-up arts charity, so neither public nor private, really. But there were no pensions, ill-health retirement, personnel support, etc. You either worked, or you stopped work, claimed benefits, gave up your mortgage, and moved into the rented sector.

Although I've had ME since I started work in 1976, I eventually had to do the latter. Advancing age, plus an undiagnosed B12 deficiency so severe it was starting to cause dementia, forced my hand. Absolutely the best thing that could have happened, though – I loved my job, but probably stayed in it for 10 years too long. I'd no idea how much I'd lost from trying to stay on the treadmill and assuming that things like owning my own house were actually important.

I'm happier and so much more relaxed now, my ME's a lot more stable (a painfully slow but significant improvement), and although I grumble no end about not having a big enough garden, the house I rent would cost half as much again to buy as my previous one, and the build quality and local environment are reflected in that. And if something breaks or leaks or otherwise goes pear shaped, I just email the council instead of worrying it's going to cost a fortune...

 

[Invisible Woman]

AtW began in 1994, so it was pretty well established by the time I first applied in 1999 (I've used it three times). I needed an advocate as much as anything, and that's why I decided to try it.

I'm glad you got help and support.

I sought help and contacted Citizen's Advice, the DWP, and talked to my employer explaining that I was really struggling (I was having to give up work by then).

Not one of them explained there was any facility to help me at all. Even though I specifically asked if there was any possibility of advocacy.

In my job mental clarity, being able to absorb large amounts of inform quickly, be able to communicate effectively etc were fundamental. Having ME merely meant to them that I felt fatigued so maybe that's why none of them helped.

As I said I don't want to hijack the thread but I was actively blocked from help and support all round. It's probably harder to do that these days with the internet. Private sector companies with big HR departments can be very good at making an employees life difficult, if they so choose. All within the law.

What do you do when the people who are supposed to be there to help you don't? When the employer's OT decides to write to your GP to enquire if you could be eligible for GET? And chooses to ignore all the myriad difficulties ME brings?

The point I'm making here is - when you are struggling, especially cognitively, trying to stay in employment albeit with adjustments and have no knowledge of the "system", what you can claim and how and no spare capacity to find out then life is very difficult.

I'm glad it's worked out for you @Kitty, but it doesn't work out so well for many others.

Even with housing, I'm afraid you turned out to be lucky, maybe because of where you live or are happy to live and were on a relatively low income. A relative of mine desperately needs the kind of home you're describing but won't get it. There simply aren't enough of them where this person lives and if she moved then she'd have to uproot her child and still might not get one - this person doesn't have ME but a different & well recognized condition.

Worse still, some of this active blocking of health and support was, and possibly still is, deliberate thanks to the BPS framing. If you indulge them in their false illness beliefs you are acting as a facilitator. Nothing worse than being desperate for some help and support and being denied it by someone who mistakenly but firmly believes they are doing it for your own good.

 

[arewenearlythereyet]

Just thought I would pop in and thank everyone for their comments. I’m still digesting but having so many experiences already has been really useful. I particularly like:

• How long to carry on working and balancing work vs quality of life, I’ll health retirement etc
• What reasonable adjustments are important particularly worth considering the tapering off and spreading of hrs over the week. I like @NelliePledge had a Wednesday hump day break when I was returning to work but hadn’t considered using this for holidays/working from home etc.
• Different attitudes to ME from different employers. This is important and definitely doesn’t take the thread off track @Invisible Woman my experience from my first employer was similar to yours when I was diagnosed in 2014 so very relevant I think (the food industry is particularly lean and doesn’t carry “dead weight” and HR definitely performs the function of judge jury and executioner ably assisted by discriminating line managers who don’t really care for medical reports with or without BPS drivel in them). My current employer is no where near like this but after a few months of lower productivity due to a relapse I’m being put in the process of underperformance. Hopefully it won’t end up like the last time (redundancy and employment tribunal)
• Using OH and ‘access to work’ in particular was something I had never heard of @Kitty

I will try and start the summary of suggestions/things to consider ...I’m preparing for my OH nurse appointment next week so it will probably take me a couple of days

 

[Wits_End]

For fatigue, cancer and MS seemed to be the most comparable and familiar.

I'm reminded of my caree's home assessment for PIP (Personal "Independence" Payment): the assessor assured us that, as a former cancer nurse, he "understood fatigue". Yet the assessment report he wrote showed that he had no comprehension of her condition at all. So maybe be a bit careful with the "cancer" part.

 

[Invisible Woman]

That the problem with "fatigue". Everyone thinks they understand it and they do understand their own experience of it, they just don't always have the insight to realize that not all "fatigue" is the same.

There's normal fatigue, there's the fatigue that comes with some conditions but may not be identical and then there is something that might be referred to as fatigue due to want of a better name but might be very different.

That's before we discuss fatiguability.

The word is now used in such a way as to obfuscate rather than give clear meaning.

The chronic pain clinic land grab by BPS aside look at all the different words we have for pain and how important they are to aid diagnosis -headache stomach ache, backache, toothache, sharp, burning, cramping etc.

 

[arewenearlythereyet]

Maybe my situation was different as it was so long ago but the whole fatigue thing was a big problem for me and a real barrier to being taken seriously. Comparing to MS or cancer when those aren't the diagnosis you have may not be helpful.

I just meant comparing the fatigue to that of cancer and MS. It was really helpful when speaking to those I didn't work with directly, as people often have friends, family, or neighbours who've been affected.

Yet the assessment report he wrote showed that he had no comprehension of her condition at all. So maybe be a bit careful with the "cancer" part.

I think this is quite important. For me I really struggled to find any help on how to manage the fluctuating nature of ME at work. Having recently had my first proper relapse (as opposed to being run down for a week or two after a cold) I found there was no guidance. In particular I didn’t know how to manage sick days....I’m currently recording hrs worked and when it gets to two days not worked that I can’t make up, I’m taking as sick leave. This doesn’t really work since I have to have a “return to work” interview when I’ve been working throughout. It also will trigger Bradford monitoring appraisal once I have more than 4 episodes of “absence” in the year.

when I asked my employer for advice on this they said “they didn’t have any experience of fluctuating conditions”. I found this quite difficult to believe given that RA and MS have this and even cancer treatment would give you good and bad days. Cancer is so prevalent, it was useful to use this in my reply.

When I replied making this point in writing linking the advice on managing relapses from the MS society below they then admitted that they do have a process for chronic conditions

https://www.mssociety.org.uk/care-a...ving/working-and-ms/information-for-employers

I think treading with care is good advice. I’ve never really cared to explain my illness to people in detail and avoid talking about being tired or fatigued for the reasons mentioned (‘we all get tired’ etc). I occasionally correct them when being dismissive or when others downplay symptom severity and I’m always open and honest about it, particularly when people ask beyond the superficial “how are you”. I tend to normally say “as well as can be expected” or pick a symptom like pain or nausea or brain fog and say “the x symptom is particularly bad today”.

However I can see if you need to share duties with a colleague as opposed to your boss, I guess this is something that is better explained in more detail so that you can make sure your colleague doesn’t feel put upon when they pick up some of your work.

On the flip side, empathy depends on the personality and values of your colleague and I think it’s 50:50 at best whether their sympathy would extend beyond tolerating the situation. In which case it’s better to just ensure your boss is on side and any backstabbing from the colleague is reflected back at them as discrimination.

In my previous job I had 5 colleagues who thought my illness was unacceptable behaviour and worked with my stand-in boss to try and get me the sack (unsuccessfully because I could prove my illness/diagnosis and a lot of their ‘evidence’ was easy to disprove with emails etc). These were colleagues I had worked with for over 4 years and had a good working relationship with (or so I thought) prior to becoming ill. So you never can tell I suppose.

my boss at my new employer has been sympathetic in the main and I think understands to a reasonable degree. I haven’t got any shared responsibilities so my bosses only option is to pick some of the work up herself or manage deadlines with me. This is the main issue I have at the moment and is a result of them running a lean ship I suppose.

 

[NelliePledge]

I think you’re absolutely right to avoid tiredness as a description. I think having no energy or charge on battery is more likely to be perceived as something ‘not normal’

sick absence and triggers is a minefield especially if your manager is of the robotic type who hides behind rules rather than using any discretion that is there to be used for non routine cases. Luckily for me for 5 years I had a great human being as my manager who had my back with HR. Then she retired and I lost the support.

but yes I think there’s something in disability discrimination that can mean best employment practice would be to disregard some level of sick absence that was due to the disability as far as triggers for informal or formal attendance warnings

 

[NelliePledge]

One way of redesigning the role to reduce the impact on your boss might be if you have another maybe relatively new team member who has potential maybe to get them to work with you so they can learn from you and also get the opportunity to cover for you when you’re not able to work. So you would be mentoring them.