Careers (and job) advice for people with ME/CFS (maybe particularly young people) - a discussion

I would be wary of jobs that might interfere with a normal sleep pattern. I think people with the illness should be wary of losing sleep which often happens with such work. Also it might be hard to distinguish quickly that one is having a flare-up: it could be put down to lack of sleep.

I imagine nurses tend to have to do some night work. And many types of doctors have to do “on call” work especially soon after qualifying. But it can be part of other jobs too: we had a neighbour growing up who was an aeronautical engineer or similar and he did a lot of work in the middle of the night, the one time most airplanes weren’t being used.

 

(I'm partly posting this so I can find these discussions in the future. I think I will just direct people to this thread)

I've started simultaneous discussions on this topic on Twitter:

and
Facebook

Code:

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I think jobs/careers where the career path is or tends to be to work full-time and then also study at night (or whenever) should only be taken very cautiously if at all.

 

Thanks for starting this thread Tom and to others for contributions so far. I was having this conversation with my son Frank today. He is 18 has been fluctuating in the moderate & severe ranges for 5 years now and has missed virtually all of his high school/secondary education so has no qualifications. Most of his friends are now leaving town for university or working and he was contemplating what his future could be. He is not ready to study or work right now by any stretch of the imagination but wants to at least start exploring options and find inspiration. He is realistic about the uncertainty of his future health but is seeking meaning and purpose as well as income and independence.

He is very smart & witty. He is passionate about music but has not played guitar or trumpet since he became ill, although he has played around on the computer with garage band (or something similar). He loves football (soccer) and as a kid gave up the idea of being a doctor for dreams of going professional and playing for Chelsea. He tells me he is on the spectrum which I guess is possible. He is obsessive with facts on a wide array of subjects, geography, music & football in particular. Of course, I am biased, but he is exceptionally handsome, very tall & skinny and he would make a stunning model but his POTS would curtail that.

I know there are other young people out there like him who need inspiration so any ideas would be welcome as would anecdotes about other's journeys.
Thank you

 

A major issue is also generic - that few areas (and even people when you ask them directly) like to talk about the stuff like hours, flexibility, intensity vs how interesting and fulfilling the career itself might be. I found if you speak to friends very few will ever not think their own industry or job isn't fast-paced and so on because who does, and most think every other sector has it easier.

It's almost like a dirty topic if someone without an excuse like something specific due to caring for others was to ask about whether you can do late starts or how comfortable your work environment could be eg whether its possible to find a company who would let you work lying on the sofa. I understand the reasons why somewhat, but there are ways of doing this that are more understanding of disability information needs too.

Interestingly I know a few people who've worked in career advice type things so I might ask whether 'energy-limiting conditions' (I think it might be useful to combine up for this sort of things) having a 'project' (sounds like something that is perhaps a bit more long term/ongoing) somehow getting to understand how that area works, and inputting where things would be useful/aren't met or understood eg might have their own data-needs on whatever they use would work. I get the impression advice itself is individual (and therefore could also be variable if advisers have different understanding) but re: underlying information databases people might be hamstrung too?

I guess its an advocacy area as an in-between thing that might get less noticed, but could be a positive driver in itself? But goodness knows how the area works and whether it is something that what I envisage would be possible in

 

INdeed, and there is also the issue of eg with laws or policies the 'theoretically you are entitled to' (like the 'ask for flexible working') not what generally happens/how easy it is etc.

 

another issue that I'm hoping isn't taking this off-topic is that theoretically a job or area could be suitable but culture can mean that the 'career ladder' and earnings are actually limited for disabled people. One biggie is part-time work being available but that people having to reduce their grade and significant pro rata pay cuts or certain jobs or levels being seen as (or just implicitly written off) those with different hours either being unable or not wanting to do eg manage people if you start late or finish early.

so the information has to be a bit more detailed - because I assume anyone wants to know that if they are good at what they do they will have similar opportunities to progress (as is appropriate for them) etc

 

I did myself a lot of harm by trying to work full time. Self employment was much better, and meant I could work on a project for three to four months, then take time off to recover before I bid for another.

I had to give it up after a while, though. I live alone and couldn't support myself on one very part time income, and the structure of the benefits system meant that although I could claim during the recovery periods, I only received the lowest rate for the first 12 weeks. There were none of the severe disability top-ups that I get on longer term benefits.

The rate wasn't enough to pay my housing costs, bills and food, let alone keep up the professional subscriptions I needed to do my job, so I was effectively forced out of work. If the benefits system had been less inflexible, I might have been able to keep that paced model going for a few more years.

I now find other ways to contribute and keep my brain active. I do wheelchair wildlife surveys, including in my own garden; even if I was too unwell to go out and do them, I could still volunteer to check and upload other surveyors' records from home. I'm also re-learning the musical instrument I played as a youngster.

 

I think the best form of work depends what the symptom pattern of ME is for an individual person and combining this with their own interests and existing skills.

I worked standing up which took a heavy toll. But my ability to think clearly and learn new information or even recall stuff from my background stores of knowledge was more limited than my physical capacity. I was feeling weak in body but my cognitive capacity for applied tasks was even more limited.

I continued in person studies on an on off basis for weekly short classes during this period. Humans are curious creatures we all want to understand our world better and develop a skill set.

However even my very flexible much stepped down schedule for learning, with hindsight, caused me as much harm longer term as the physical paid work I did.

I like I think most if not all people who get develop long term sickness with unknown prognosis after being relatively healthy, kept going too trying to participate in the world.

We either underestimate the level of our illness convincing ourselves we can push through, or are unrealistically optimistic about the duration of illness. Additionally whilst of course we would choose our well lives over a life restricted by sickness, for the most part continued too long isn’t a choice. We are forced into it by societies economic policies and other care commitments or obligations. You have to be seen to drop before limited support systems can be accessed.


The perception of people with chronic illnesses, is that we are at risk of depression or unnecessary economic dependence and that this is all because we lose our confidence around what we are capable of doing. The idea is that we feel more limited by our illness than we are. That we can certainly be economically active if only the right patronising career coach gets hold of you in time before you irretrievably sink in the abyss of your own sense of defeat and ‘allow the illness to define you’. You’re meant to ‘refuse to allow the illness to define you’ by the way. As a model disabled person who doesn’t let being disabled disable them.

The above attitude of distrust of disabled people by non disabled people to the extent of genuinely believing their judgements up on us to the extent that claim they know our bodies better than we do ourselves, makes it very difficult for disabled people to have access needs met at work, or the transition in and out of work.

So I think it will always be a challenge to know how hard to study how much to work and whether or not you can do any of this.

I think there are many different occupations that would be suitable for a person with ME who is at a point of stability. But the difficulty as @Kitty mentions above is transitioning between being supported and supporting one’s self isn’t based on health it’s based on economic policies. If on the other hand you’re independently wealthy the world is your oyster.

I think which career works for which person is dependent on individuals but flexibility is the central nonnegotiable factor.

I think more people with ME will be able to engage in paid work, than they have in the last few decades, now and in the future due to increased remote access online, but perhaps more importantly because of the return of advice to rest when needed and pace according to your own body and not some arbitrary target. This will allow more people to maintain their health to some degree. Leaving increased capacity to go beyond basic survival and on to many life experiences including paid work.

Edit:missed sentences and a paragraph.

 

There are some professional careers that would be well suited to some pwME if they had the right skills. The trick is in picking a type of work where you can still maintain reasonable cognitive function even with brain fog, because you have a natural aptitude for it.

My friend's sister is severely disabled, and can only work part time because using her computer is very tiring. She still earns well as an accountant, though, and has no trouble getting clients. She's popular because she has a lovely way with people as well as being a good accountant.

As a youngster I had a cleaning job for a quantity surveyor with severe brittle asthma, who had to live in a rural area to keep it as stable as possible. He worked full time and clearly had a successful career, despite being unable even to attend meetings in built-up areas. This was decades before Zoom, etc; it would probably be much easier for him now.

For pwME, the thing about having to go into workplaces is that non-work can eat up most of your resources before you do anything job-related. You have travel there, arrive at a particular time, present yourself a particular way, put up with ringing phones, bright lights and busy workspaces, deliver things to deadlines, and apply the social oil that maintains the relationships with your managers, peers, and the people you manage. If you can escape all that, enough of the time, work might be much more feasible.

To be honest, I only got away with working with ME for three reasons:

• I took jobs well within my competence, and made sure I never got more senior than Number 2 in a department or organisation. Being in charge would have finished me off in weeks.
  
  
• I'm good at planning, streamlining and automating, and could often do the same work as other people on 40% of the time and energy.
  
  
• I managed my own workload. I have the maths skills of a kid, but I eventually had to manage large budgets; I did it by getting very good at spreadsheets, but I could still only work on it when my cognitive function was at its best. If I'd had to produce it at times stipulated by someone else, I'd have made mistakes.

 

I do rideshare (Uber and Lyft) and food delivery (Uber Eats and Doordash). It doesn't pay much hourly, but I can work as much as I want, and take as much time off as I want, and they are basically the least exertion jobs I could think of that pay enough to live on (I'm bad with physical and mental exertion, and most non-physical remote jobs require a lot of mental work.)

With food delivery, for about every 15-30 minutes that I'm actively working, it's a short walk into a store then a short walk up to a customer's door. While driving to these places, I'm not using much energy since I can rest my head back on the headrest and recline a little bit.

With rideshare, I don't have to get out of my car, but I have to hold my head up the whole time I have a passenger in the car (I think it would look unprofessional if I didn't) and my neck gets kind of tired. And I have to deal with social anxiety and conversation.

So they work different muscles in different amounts.

I've always been drawn to driving jobs. A big part of it is I can be alone in my car away from co-workers (social anxiety). That and I can do a lot of sitting. I've done pizza delivery twice before the above gig work, and I did a few months as a FedEx courier recently.

Driving a long-haul semi might be okay for my ME, but it sounds insanely boring. I like variety and having the day broken up into lots of stops.

 

I’m just listening to (a recording of) BBC radio (in the UK). Someone has just said they are about to do an eight-hour exam to become a chartered engineer. Even if they allowed someone breaks (once they stayed in a particular room), that’s unsuitable for most people with ME/CFS.

I remember hearing before some medical exams (e.g. boards) in the US are marathons like this.

I myself relapsed badly after an intense 3-hour exam (admittedly with no breaks or accommodations as I wasn’t diagnosed but was only mildly affected).