Wednesday, 28 August 2019

employment, work culture and MS

One of my favourite podcasts is Beyond Today from BBC Radio 4. The idea is that they talk about one topic from the news every weekday - as they put it, they ask one big question about one big subject.

A recent episode was called "Is the way we work bad for us?"

This was prompted by an office-space company called We Work which has a kind-of Utopian vision of the future of work. But some people say that it creates a culture of 'hustle porn' - people needing to be seen to be busy and competitive and be defined by the way that they work.

This episode also looked at how the quest for perfection has infected many aspects of modern work culture, leading to a crisis of burnout among young people.

I really enjoyed this episode of the podcast (to be honest, I enjoy them all) but I did spend a lot of time thinking "Tell me about it!"

my work history

I was diagnosed with MS 14 years ago. At the time I was working full time in arts marketing, something which I managed to keep doing until December 2016.

I don't want to go into how that played out again - my employer was basically pretty understanding about my health (up until the point when they weren't). But eventually it became unfeasible for me to continue.

Like most people with MS the main thing I deal with is fatigue. The act of leaving the house in the morning - making breakfast, washing, shaving, making lunch, travelling into the office - was one of the most exhausting things I'd do each day. Meaning that I could be wiped out even before I'd made it into work.

Even so, when I requested a day a week where I could work from home (something recommended by a Community Occupational Therapist), I was expected to tell my boss exactly what I was doing and what I had achieved on that day. My remote working was viewed with suspicion, despite the fact that I'd been in post for over eight years at this point.

Since leaving that job I've had a handful of short-term contracts but have struggled to maintain any consistent level of employment.

For a recent freelance contract I'd been open about my health during the recruitment process. Even so, I was expected to go into the office on most days, despite the fact that all of my role could've easily been done remotely.

Why is remote working still viewed with suspicion in the U.K.? Particularly as the primacy of an office-based work culture can effectively keep disabled people and those with a chronic illness out of the workforce? Never mind any macho hustling!

the way forward?

Interestingly, friends in America have shared news stories and links to organisations that seem to point to a more realistic path. See THIS LINK for a story about the value some US Businesses are placing on disabled workers and remote working.

It should be fairly standard practice - but in this country at least businesses might talk about social responsibility and reducing their carbon footprint (for example). And it doesn't seem to make a difference to working and recruitment practices.

The people I know who are either disabled or have chronic illnesses don't want to sit at home living off benefits (despite some media portrayals!). I want to support my family and I also want to keep my brain active. But work will have to fit around my illness and hospital appointments.

Kathy at is just about to launch her Patients Getting Paid course, which will help chronically ill people to find legitimate work opportunities that accommodate their health conditions, wherever they are in the world.

A recent FUMS podcast episode was about Chronically Capable, "a platform that strives to connect the chronically ill with meaningful remote work and flexible employers".

This sort of thing is amazing. Why don't we have anything like it in this country?

my (future) glittering career... hopefully

I've really enjoyed the work I've been doing editing the FUMS podcast. And y'know what? I'm really good at it.

Some of the interviews necessarily come with audio issues - dodgy sound quality, even moments where the audio has totally dropped out. I've been able to fix these to the extent that even I can't see where the edit is. I've also started creating additional bits of background music when it's needed.

With that in mind, and with the support of Kathy at FUMS and Jackie (Queen of GSD), I'm currently exploring the idea of working as a Podcast Editor (see the lovely website Jackie designed for me at

If I can make this work for a while it will be perfect for me. So if you know anyone who might need my (very reasonably-priced) help please get in touch!

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