This week, we’re joined by good friend of the Rest Room, Pippa Stacey, a writer, blogger and public speaker who works with the UK charity Astriid, which matches talented people with long-term health conditions with meaningful work. We’re also joined by Bruce Daisley, who’s a best-selling author and self-proclaimed workplace culture enthusiast.
We discuss the state of inclusive employment for chronically ill people, the challenges that people with long-term conditions face when trying to find (or stay in work), and some of the wider trends happening in the world of work, including the impact of the pandemic.
You’ll also hear from some of our listeners about their experiences of navigating accessible work with chronic illness, and a whole lot of excellent advice on how to to make sure a job is sustainable for your needs, and advocate for yourself in the workplace.
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Natasha: Hello and welcome back to The Rest Room, the podcast about living well with chronic illness. I’m your host, Natasha Lipman.
I spent most of my formative adult years having to leave every job and opportunity that I had because I was too unwell to keep up. I’d push myself until I’d crash for months on end, leave the job, recover, try again somewhere else, and so the cycle would continue. All I wanted to do was work, to “live up to my potential” but I couldn’t figure out how to do it in a sustainable way.
The average person spends about 35 hours a week at work, but what does that look like for people with chronic and energy limiting conditions?
For many people with chronic illness, those hours are just not feasible, and pushing to try and work in traditional ways often ends up making them even more unwell. Some people are not well enough to work at all, but there are those who may be able to work small amounts, if only they had an accessible role and the support to do it.
But as so many of you will know, there aren’t that many opportunities out there for disabled and chronically ill people to access flexible, meaningful employment. It’s 2022 and our society is still very much stuck in a Monday to Friday, 9-5 mentality.
Of course the pandemic has shifted things slightly (more on that later) but many disabled people and those with energy limiting conditions are still forced to give up on their career goals due to a lack of accessible employment.
Why is it that the system just can’t seem to find a place for us despite the undeniable fact that we have SO much to offer a workplace?
These are all questions we’re exploring in today’s episode, as we consider some of the barriers disabled and chronically ill people face when it comes to finding and securing employment, why employers seem so unwilling to create accessible roles, and how to advocate for yourself in the workplace.
My guests today are friend of The Rest Room, Pippa Stacey, a writer, blogger and public speaker who works with the UK charity Astriid, which matches talented people with long-term health conditions with meaningful work. And Bruce Daisley who’s a best-selling author and self-proclaimed workplace culture enthusiast. Plus, we’ll hear from some of my listeners about the barriers they’ve faced when it comes to employment.
First, let’s hear from Pippa about some of those obstacles…
Pippa: There are so many. I think a big one of course is finding inclusive roles to apply for in the first place. During the pandemic, obviously working from home became a lot more normalised. But even in that case, somebody might think, “I’m able to work in some capacity, but all of the opportunities I’m looking at are either too many hours, or the policies aren’t going to fit around my health needs, or the organisation isn’t actively promoting that they support disabled talent.” So even just finding those opportunities to apply for in the first place is a big barrier. We have seen some movement recently, not only with work-from-home flexibility, but we are finding that a lot of employers seem to be interpreting part-time hours as like 16 to 18 hours a week, which is still a lot for somebody with a chronic illness.
So what we’re also trying to normalise is that somebody might need 16, 18 hours a month or even less. And those people should still be able to engage with work as well if they want to. That’s definitely one of the big things at the minute.
And the application process in itself can be quite a challenging thing when you’re dealing with limited time and energy. It’s something that candidates find really beneficial, is when somebody is advertising a role, they really like it when they see positive discrimination. So there’s sometimes just a line on the job description saying, “We welcome applications from disabled or people from other marginalised groups.” And that’s how they know that this organisation may be more likely to implement the adjustments they need and to view them on a more level playing field. And then during applications themselves, it can be really valuable to offer different formats, different approaches, because different people work best in different ways.
A lot of graduate roles require very intensive training days. And a lot of people, again, feel afraid to ask for adjustments because they don’t want to be counted out by default. But even the training days … And, again, it differs. So some people might find it more accessible to divide those training days into separate days so that they can rest and recover in between. Other people will prefer to just get it all done in one go and then have time set aside to rest afterwards. People should just know that it’s not impossible to ask for adjustments, even at that very early stage. Employers have a duty to accommodate these things. And at the end of the day, it’s beneficial for them. Because by providing these adjustments, you’re going to be able to put your best foot forward and they’re going to be able to better recognise all of the asset to their organisation.
Natasha: I asked some of our listeners what their biggest barriers to work have been and Ellie told me for her, it’s been getting a flexible role that suits her health needs…
Ellie: My main barrier for getting a job with chronic illness was initially my physical symptoms, namely the fatigue and extreme brain fog. Now that my conditions are managed better, my primary challenge finding work is looking for a flexible enough job that I can do from home, and having understanding employers who work with my health to get the best results and not against it by giving me strict working hours or an excessive workload.
Natasha: It’s a similar story for Grace who has EDS. She used to work for an international bank before her job made her so ill she was forced to go on long-term sick leave…
Grace: When it was really bad, and I was in a lot of pain, I was literally waking up in the morning, crawling to my desk, sitting on Zoom meetings from dawn until dusk, and crawling back into bed, trying to use hot water bottles and different pain medications to keep me going through the day. And it’s really hard because you’re almost having to take on this persona while you’re doing the Zoom meetings that everything’s okay. I ended up having to go on sick leave for around eight or nine months because it just became completely unattainable, and even though I was very transparent with them, in reality they weren’t going to change the ways of working or provide extra support.
It took a really long time to get back, and even the confidence to go back to work. But actually while I was unwell, and I was still pretty much bedbound, I was approached by a company who have offices about 15 minutes drive away from where I live, who are more of a startup, and very much into flexible working. They have policies where it’s around work where it works for you, and so I knew already that it was going to be the kind of place that would allow for my disability, but also mean that I could get some sort of life back. Because I was finding I was losing myself, and what I really enjoyed in working and having a purpose every day. I had other hobbies, I had different passions, but actually I really missed the face to face interaction and working on a problem with lots of different people.
I went through the application process and I was transparent from the beginning about my illness, and I would really implore other people to do the same. I managed to get the job, and my takeaway from all of this is make sure you find an organisation that accepts you and your skills and yourself, your whole self, for who you are.
Natasha: It’s really reassuring to hear Grace was able to find a job that suited her and an employer that was willing to be flexible. But as Pippa explains, once a candidate manages to land a role and get their foot through the door, the challenges may not stop there…
Pippa: People are still having difficulty securing workplace adjustments, which should be such a simple thing, but we’re finding that people either don’t know that they’re allowed to ask for them, or they don’t know what kind of things they’re allowed to ask for, or they’re worried about being a burden or causing trouble. They don’t want their colleagues to gossip about them, or to think that they’re getting some kind of special privileges. So often, people don’t have access to the adjustments and the equipment and the support that would enable them to do the role to the best of their ability. Again, that’s a big topic, and purely in a personal capacity, I’ve been navigating Access to Work recently, which is a program that is there to tackle this issue and to provide support for disabled people in their role, whatever that role might be.
And even that is a big undertaking. It takes a lot of time and energy, and there have been times where I’ve thought, is the end product worth all of this grief it’s causing me here and now? And I’ve no doubt I’m not the only one in that position. And I think that’s reflective of the burden that’s often placed on disabled and chronically ill people themselves. So often, all of the additional challenges, we have to take personal responsibility for, which means… As well as adapting to a new role, we’re also having to tackle all of these other adjustments as well. And I’m not surprised that many people find that transition really, really difficult.
Natasha: So how open are employers to offering different ways of working and supporting employees with long-term or energy limiting conditions? Bruce says unfortunately we still have a long way to go…
Bruce:
Yeah, I think it’s still pretty low on the agenda. When I turn up at a conference, the amount of times there is someone signing, for example, is, I have to say even now at big conferences, is one in a hundred. And so just the little things that are showing you the way of how much there’s been a consideration of these needs are still pretty small. The only places I’ve really seen it is in government events, actually. So it’s pretty evident from the little things that you can glimpse, and they stand out. I think the fact that they are so exceptional gives you a clue.
I remember the restaurant critic, Egon Ronay, was famous, who did The Good Food Guide, he was famous for the first thing he did when he went to restaurants was go into the toilets, because if the toilets were dirty, it was normally a sign that the kitchen was dirty. And you can normally, you’ve got to judge things that are on display because the things that are on display give you a clue to the things that aren’t on display. And so using those things is probably a pretty good guide to working out how other things are being considered along the way.
Natasha: Of course when we’re talking about access to employment this can cover a whole range of disabilities and health conditions. For example, someone who uses a wheelchair may well have the energy to work a full time job, but perhaps they need a ramp or lift access to enter the building.
Whereas someone with an energy limiting condition may be able to get physically in a building, but there’s no way they can sit up at a desk, surrounded by people, and concentrate whilst staring at a screen for 6 or 7 hours a day. Let alone managing the commute.
Pippa says that when it comes to accommodating people with energy limiting illnesses specifically, there’s so little conversation around how roles can be adapted…
Pippa: In the past, I’ve taken accessible employment to mean find something that’s going to vaguely work and then push yourself to make it doable. I’ll be honest, sometimes that is the only way in, and that was definitely the only way in a few years ago. But that’s definitely not sustainable over the longer term so I would never want to advocate for somebody doing that now.
And I suppose one of the big things that I’ve discovered through my own experiences that I’ve also seen reflected in a lot of other people’s experiences as well is that even though the conversation around disability and employment is beginning to progress, and that’s a really positive thing, and that’s definitely something that I’m championing, the unique challenges of chronic illnesses aren’t always reflected in that conversation.
So I tell this story so many times, but when I had recently graduated, I really struggled to find work that was inclusive for me. And eventually I found this program for disabled graduates, this internship program, and I got so excited and I did my application and they replied straight away with a really curt email saying, “We won’t be forwarding your application because you’re not well enough to work full-time.” And at the time, that was the big inclusive employment scheme. That was definitely a slap in the face. And it just goes to show sometimes that even though there is this progress happening with disability more broadly, it’s really important that we consider the very unique and very individual challenges of chronic and energy limiting conditions and make sure they’re reflected in that movement as well.
Natasha: Now, we can’t have a conversation about flexibility in the workplace without talking about the impact the pandemic has had on the way we work. When the pandemic started, I saw a lot of frustration from chronically ill and disabled people on social media, and if I’m being honest felt some of it myself. Flexible and adaptable working became the norm almost overnight, when people had been told for years that this stuff simply wasn’t possible. Turns out, it was.
For me, the pandemic was a game changer. Even though I had been predominantly working from home for years, when all our meetings went on Zoom, I felt really part of a team for the first time in my working life, not just a disembodied voice on a crappy loudspeaker in an echoey conference room. Other opportunities to speak and attend events were actually possible, because I could do them from home.
That expectation to be there in person, even if it was an expectation I put on myself sometimes, was gone. I was suddenly the expert in working from home, advising managers and helping friends make the transition. I’d been preparing for this for years.
Bruce says there’s no doubt the pandemic has changed the way we think about work…
Bruce: Any manager who had an absence of trust has probably found the last 30 months really difficult.
When we first went into the pandemic, I think most people thought, we’ve got no way of knowing how to do this and we’re making it up as we go along, and that improvisatory spirit was actually quite motivating. People reported that because we were working it out, because we were trying to solve things as we went along, they were quite inspired by the freedom that gave them to make decisions.
As time has gone on, I think we’ve gone through several stages. We’ve learned how to do things differently. I would broadly say that the biggest trend has been some degree of removing the attachment that we’ve got with our jobs. For a lot of people, our jobs represented our identity. Now you might call that enmeshment, that our job and our real selves were very heavily overlapping. But I think the question now has become, because a lot of people have reduced that, their work is no longer this defining, dominating force in their life. But the question might be, is that at the expense of work not feeling the same? And I guess there’s big questions to be answered there.
Natasha: That being said, some of the positive shifts we’ve seen over the last two and a bit years when it comes to making the workplace more accessible are being reversed in the name of “going back to normal” – at least that’s what I’m seeing and hearing within my own friendship circles. Bruce says navigating work in a post-pandemic world is tricky for employers and employees…
Bruce: There’s a court case going through at the moment that I’ve seen talked about in HR circles, of two employees who asked their boss if they could work remotely. And the white employee was given permission to work remotely and the Black employee was denied it. And so there’s clearly some barely-concealed subtext going on, where bosses instincts are to recognise a situation when something looks like them and feels like them, but be questioning of it when it’s of a broader and different use case. I think holding the mirror up to that right now is really vital because the amount of people who I’ve heard … exactly to your point, the amount of people who I’ve heard who’ve said, “This has been liberating because for the first time I’m no longer justifying the way I work, I’m now able to focus on getting my work done and feeling like I’m recognised in an equal way.”
So it’s a really vital moment, I think. As I say, this feels like there’s more to go on this. There’s more debate happening here. I think what we are going to see is a long-term change, even if there are generational elements and there are hierarchical elements going on at the moment.
There’s a professor who teaches at Stanford University and focuses on these things, looks at these themes. And he’s convinced … A professor called Professor Raj Choudhury. I chatted to him a couple of months ago and he said, “It’s really interesting to look how the job market evolves over time.” And so there are some things that we take for granted in the work market now that were really revolutionary a decade, two decades ago. It wasn’t a given 15 years ago that people had their work email on their phone. And, actually, it really came around at the Blackberry era, just before the iPhone explosion, but it’s a blink away because it represents one generation of the workforce away.
And what happened in that stage very quickly, it became something that the best workers demanded email on their phone because they were convinced they could do their work more easily and there’d be less work to be done when they got home. Little did we know. As a result of that, top talent set the standards. The best workers set the standards. Now he’s saying, “If you look at that now, the best workers, the most in demand graduates, are demanding work from anywhere.” Now, whether that comes to pass or not, it gives you a very strong indication that employers who believe that they are calling the shots are going to find that if they want to attract those highly-desired elite workers that go to the best universities and have the best degrees, they’re going to have to compromise to some extent.
And that’s the fundamental question of this, isn’t that as soon as anyone sees the market effect, as soon as anyone recognises that it’s not that they are the BBC, or it’s not that they are Google, or these elite employers that everyone would dream to work for, it’s not just a question that they can call the shots, but also the candidates they’re trying to attract have got a say in this debate. It will help to shift things. So if you end up with a scenario where the best employees get to choose where they work, then second-tier employers will either be faced with, “Do we go along with that? Or do we stick and hold firm that we want people in the office every day?” Look, we’ve always had a segmented job market, but you can imagine it’s going to be very difficult for those people to attract talent unless they pay a lot more. So it’s a really interesting reckoning that’s going to take place in the job market from here out, I think.
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Natasha: I really hope what we just heard from Bruce is true and that we see a shift in the way we “value” employees. One of my biggest downfalls when I first went into the world of work was this feeling that I just needed to keep pushing, to keep doing, no matter what. For many years, I barely mentioned my health issues, and just ended up leaving when I became too unwell. Eventually when I was open about my health, I wanted to prove that just because I had to work differently, I still had value as an employee, and ended up pushing myself.
But how else would I keep my foot in the door and build a career?
It’s something I know so many people in this community struggle with, and it’s something Pippa says she’s experienced too…
Pippa: I often feel, I say this a lot, but often it’s though we have to work twice as hard to achieve half as much as anybody else, and even then I still feel like I have to go out of my way to “prove my worth,” I feel like we have to go that extra mile. Well, we don’t, but I feel like there’s often internal pressure to go that extra mile to show that we do deserve to be here, and I don’t think that’s something that a non-disabled person could necessarily relate to. I think there is that desire to do your job to your best of your ability, but often people with chronic illnesses have internalised so many negative beliefs about themselves and their worth that we often feel this compulsion to almost over-give and over-perform just to show that we warrant the same as everybody else, which is actually quite harrowing to think about really.
I remember in my first job after I graduated, I was very lucky to get the job. It was slightly above my capability level but at that point I realised that that was probably the only way I was going to be able to get my foot in the door, so I was just doing it as best as I could. And I was working from home, and we had an online chat service, like Teams, and I remember I would always make sure I was logged on at 8:59 so I could send my first message at 9:00 on the dot, and even if I finished my work slightly early that day I would be there at 4:59 ready to send my good goodbye at 5:00 exactly to prove that I’d been there the entire time.
And it’s just little things like that, which I’m sure other people might not necessarily give a second thought to, but I felt this compulsion to do it because I felt so compulsed to show that that was my worth and I was doing the best that I could, and I’m sure I won’t be alone in that experience.
Natasha: One of the things you said was we want to be showing what we can do, we want to be showing things to the best of our abilities, and I think one of the hardest things about chronic illness is that our health can directly impact our ability to do what we know that we are capable of doing. And for me, that has always been the hardest thing, is that I know I could do more. I know what I’m capable of if my health didn’t get in the way, and that’s an incredibly frustrating thing because you don’t then feel that you are able to represent your skills and your abilities to the best of your abilities, because your health is getting in the way of that.
Pippa: For sure. I mean, this is something we’ve talked about before, isn’t it? Having all of these ideas in your head, and all of these things you want to do, and just knowing that you don’t have the body that could just… I’m at a point in my life where I just wish more than anything else I could just put my all into my work, there’s so many things I want to do, and often the hardest part isn’t motivating myself to do it, because all the motivation is there, the hardest part is thinking I need to stop right now and rest. I want to keep going, I want to do another half an hour, 10 minutes, five minutes, one minute, but knowing if I don’t stop and rest now I’m going to be ill for days afterwards, and that means I’m going to be able to do less in the longer term.
So I completely agree, and I’m sure that’s the same for many, many people, it’s not that… This should be such an outdated belief, and sadly it’s not, there is still this misconception that chronic illness somehow equates to laziness or a lack of motivation, and oh my goodness, that couldn’t be further from the truth. Often it’s the case that people are so raring to go, and when somebody does secure work they so badly want to put their all into it that often the biggest challenge is not overexerting and going through that boom and bust process, it’s not that they don’t want to do it, it’s just finding ways of making sure it’s sustainable over the longer term, and that can be very difficult emotionally, as well as physically, I would say.
Natasha: We seem to be stuck in this old fashioned mindset that employees need to be visible in an office to be “good” or “valued”. It’s something Pippa says she sees in the work she does with Astriid candidates…
Pippa: In the past, we’ve had such a set idea of what a working day looks like. It’s somebody going into an office at 9:00 and coming out at 5:00, and probably sitting on a computer all day. I know that something that I’ve experienced in the past is having older relatives from a different generation just not understanding the fact that I have a job, but I don’t leave my front door to do it, and that we have very fixed ways of viewing, not just work, but productivity and contributing to society. It’s not just disabled people who sometimes fall outside of these norms now. It’s people who have children, people who have caring responsibilities.
But because we are so set in the way that we’ve done things for so many years, I do think as human beings, we can be very resistant to change. As for how we tackle that, I’m not entirely sure at this point.
I think there are certain success stories, and if we begin to normalise those, we might be able to help more people to address their stereotypical beliefs and perhaps become more open to doing things in a slightly different way. I do wonder whether the fact we’ve not seen that yet is because we don’t actually have many disabled people in leadership roles in the UK, so we’re not as familiar with those success stories that might not have followed the traditional trajectory of how we view these success stories. It sounds so stereotypical. We just need to centre disabled people’s voices. And then the big thing, from my point of view, is that we need to get non-disabled people to listen and engage. I think that’s one of the biggest battles we’re facing at the minute.
Natasha: Pippa says there’s a real sense of reluctance from many employers to hire disabled and chronically ill talent and that needs to change…
Pippa: They think that it’s going to require a lot of time and energy and expense on their part, when in reality, people often aren’t always aware that there are all these avenues of support that are there to help employers, whether that’s a large corporation or a small independent business. There is a pot of money there, that is specifically designed to help more disabled people to get into work and to do that job to the best of their ability. I think we need, to an extent, reverse this idea that taking on a disabled person is a good deed and you are taking it upon yourself to give a great opportunity to this poor little disadvantaged disabled person, because that’s just not the case. It’s often the case that yes, disabled people might have additional adjustments they require, but once those things are implemented and they’re happy and they’re working sustainably, they can bring huge value to your organisation.
And I’d even go so far as to say they could go above and beyond their non-disabled colleagues, because with disability, oh don’t even get me started on this, there are so many additional skills that disabled people bring to a workplace. We have a different level of empathy. We know how to communicate and self-advocate on a different level. Our time management is off the scale. I really wish that it was easier for more employers and line managers to recognise that and to get rid of some of this fear, which still seems to be instilled in a lot of people, about what a disability and chronic illness actually is. If we can get rid of that fear and get people recognising all of the positive traits that somebody living with these long-term conditions can bring to the workplace, I think that’s how we can begin to reverse some of these things.
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Natasha: We know there are some huge problems that need addressing, both societally and culturally. Bruce is optimistic and believes change is coming…
Bruce: I think we’re just at the start of this, but I think there’s going to be a revolution here. If you think about this, when we used to look at jobs before, so my fascination is workplace culture. My fascination is the dynamics because if you’ve ever… I’ve done a lot of bar work, and the first night you work in a bar, the first night you work in a restaurant, you’re like, “It’s going to be a bad time here,” because there’s just some bad mojo, bad energy which actually normally translates through to the customer service that you provide.
So, I’ve always been fixated with workplace culture. The interesting thing is if you took an office job, till three years ago, it didn’t need to be said. You took an office job, you were accepted somewhere. You knew that you needed to start some time around nine o’clock. You finished some time around six o’clock if you were full-time, and you did that five days a week, and it was kind of, you can imagine that people might have accepted jobs without necessarily needing to ask those terms. Now, we’re entering into an era where that’s not a given. Firstly, the number of days of week, then how many days that people need to be in a different place, and as yet, we’ve still not built the mechanics of demonstrating that because there may well be a whole load of people who say, “I can work 40 hours a week for you, but they’re going to be a slightly different time.” Where do we advertise those jobs? By some reckoning, a third of all the jobs on LinkedIn say now you can be fully remote.
So, actually for the first time, we’re going to need to articulate to people, “Here’s what our culture is.” You can imagine that, okay, if I’m struggling to buy a flat or rent a flat, rental crisis going on in big cities at the moment. If you’re struggling to rent a flat, well, it might be appealing to go back to where you’re from, in Yorkshire, in Scotland, in Northumberland. Okay, I’m going to go back to where I’m from because I can rent somewhere there and be near my friends. Actually knowing that you could choose to do that without needing to spend 200 quid a month on a train fare down is a really important thing, and we’ve not yet found the opportunity to demonstrate those things.
So, I’m convinced that these things are structural. They’re not short-term, and we just probably need to find a way to articulate them.
But there most definitely will be I think accessibility jobs and job boards. There will be ways for people to say, “Okay, I’m going to work in these ways,” and throughout all of these, the people who’ve really helped redefine the market have always been those who’ve been downtrodden and oppressed, whether that is women who’ve said, “I can work, but I need to work flexibly,” or people who have got accessibility needs have said, “Okay, well look, here’s what I can do. Here’s the way that I can do technology.” They’ve had to overcompensate, but I’m pretty convinced that we are going to reach a stage where in five years time the job market for accessible jobs, the job market for fully remote jobs will look transformed from even where we are today.
Natasha: And Pippa says there is so much that businesses and employers can do from the top down to enact change…
Pippa: I think it’s really valuable when employers take the initiative to reach out to disability specific organisations and chronic illness specific organisations. It’s really encouraging to see people in leadership positions taking that upon themselves. And one of the things we’re doing at the minute is developing some training programs about disability awareness, disability employment. And as part of that, we’re weaving into it the unique challenges of long term conditions as well and we’re trying to roll that out to various employers in the hope that that’s going to offer an appealing and accessible way to learn more.
We like to encourage people to have in diverse speakers, so I often get sent out to talk to these people directly. And often having somebody share their lived experience is a really powerful way for people to understand that hiring people with chronic illnesses isn’t just this act of charity or a tick box. It’s actually a really cool way to get more talent into your workplace, because as we both know, there’s this huge talent pool that isn’t tapped into at the minute.
As well as employers taking that initiative, I think we also need to see change on a much broader scale. There’s been some really positive movement with an organisation called the Disability Employment Charter. They’ve laid out lots of different specifications for how they would like to see things change. We know that there’s going to be mandatory disability reporting for bigger organisations to reflect how much disabled talent is in their workforce. And again, I think stuff like that is definitely something we should be championing. Not just in my Astriid capacity, but in a personal capacity as well, I really want to make sure that people with chronic and energy limiting conditions are reflected in that movement as well.
Natasha: Whilst change is slow, amazing organisations such as Astriid and Patchwork Hub are doing tireless work to make a difference and make employment accessible for everyone.
With that in mind, what actions can YOU take if you’re either disabled or chronically ill and are looking for employment? Perhaps you’ve been ill since you were a child or teenager and never had the chance to do work experience.
It’s something Pippa helps people with in her role at Astriid…
Pippa: It’s something that we are trying to unpick at the minute and making sure that in the conversations we have about inclusivity, one of the things we are really trying to recognise at the minute is that there are some people with chronic illnesses who are like us, they have ambitions that are bigger than their daily energy expenditure. They want to do all of the things all of the time, and they want to have a career and make that incrementally build up.
For other people, having a job to them means doing something that pays the bills and still being well enough to enjoy their free time. They just want something in that respect and they don’t relate to that feeling of wanting to have a career, that isn’t one of their core values. And both of those things are completely fine and I don’t always think they’re reflected in these conversations.
So it’s an interesting one. And if somebody doesn’t have work experience, I suppose it depends what their intentions are and what their personal goals are. But even having internships and experience where people can just explore what kind of skills they might have and what kind of work they enjoy, I think that’s a really important first step before we go on to thinking about paid employment. And again, that’s a whole other conversation because I would never want to advocate for copious amounts of unpaid work, which we know that many disabled people are subjected to. But something that I’ve actually learned from our Astriid candidates that I didn’t necessarily relate to myself is that a lot of them liked having unpaid and voluntary work because they felt like it took some of the pressure off while they were still figuring things out. So that’s a really interesting perspective.
And I suppose like anything, we just have to consider that people with chronic illnesses, everybody is so unique, not just in their conditions and their condition management, but in their personal wants and their aspirations too. So it’s such a complex area and there’s so much work to be done, but I suppose it’s a case of chipping away a bit at a time and just taking the lead from the individual.
I think a really useful exercise is to not just sit down and think about what your ideal career would be, but sit down and have a think about the skills which come most naturally to you. There are going to be certain skills that are less energy consuming for you specifically, because they’re something that you are more naturally able to do. For me, it was always things like writing and communicating. For other people, it’s going to be things like problem solving, working with technology. And often making a list of those core skills can be a good way of considering what other careers might be out there that you might not have considered before.
A big thing that we’ve found through Astriid is that there’s going to be, I mean this obviously isn’t breaking news, but technology is going to be the future. And there’s a lot of ways that people can adapt their skills and adapt the things they want to do and look at them through the technology lens and doing that. And then Astriid facilitating training in that sphere is going to make them a lot more employable with more of the jobs that are going to start cropping up on the future. So on the one hand, I like to encourage people to be ambitious. I’d hate for somebody to think that their chronic illness means that their career world has to get smaller, but at the same time, I do think being able to be adaptable and flexible in what you want out of a career can sometimes lead you to something that you might not have thought of before, but could be more fulfilling in the long term.
And that’s definitely something that I’ve experienced personally.
I don’t know how the heck I stumbled into the job I’m doing now, and I would never have set out to do it. But I know with absolute certainty that this is what I was made to do and this makes me happier than anything I envisioned for myself before. So even if it feels tough at the moment, and even if you think, “Oh my goodness, what am I going to do now?” I just want to encourage you to have confidence and to trust the process because you never know where you’re going to end up. And I just want people to know that you can have all of the things that you want to have. It sometimes takes a little bit longer to get there, a little bit more advocacy, but I wouldn’t want somebody to give up purely based on their chronic illness.
Natasha: And how do you go about making sure the job you end up going for is sustainable for YOUR needs…
Pippa: This is going to make me sound like an absolute hypocrite because I didn’t do this and I should have done this. But my best advice to somebody who’s starting out would be, when you are going into your first role, take on slightly less than you think you’re capable of. So when you’re trying to make a good impression on somebody, it can be tempting to say, “Yes, I can do this, this and this. I can even do this if you want me to.” Because you want to show that you’re good and show that you’re going to be great in this role. But I think it’s really important, especially when you’re starting out, going into regular work is a big transition, especially if you are new to chronic illness or you’ve recently graduated. Building up that stamina, it’s a different kind of stamina to anything else I’ve experienced before.
So wherever possible, I would say take on slightly less than you think you’re capable of. See how that sits with you over the longer term. And then if you feel able to build it up, that’s great because it’s a lot easier to add stuff on rather than try and take it away when it’s too late. So as tempting as it can be to go in with all guns blazing, and again, I hold my hand up and say that is definitely something I have done and still do, and I’m still working on. It’s much, much better to show yourself that compassion right at the beginning to figure out what your boundaries are going to be. Not just professionally, but personally as well. And just build it up from there. And again, I am no good at this, but I think having patience is such a crucial skill for a chronically ill person seeking work. It’s so important to be patient with yourself. And even if you are not where you want to be right at the beginning, that doesn’t mean that you’re not going to get there one day.
I think a good way to think about issues like these is to think about something called post exertional malaise, which is a term that’s specific to ME, which is my chronic illness, but I know is relatable for people with lots of different chronic conditions. And by that I’m essentially meaning to the ‘payback’ that you would get at a later point in time from doing something at one point in time. So it might be that you are working away at your desk and in that moment you feel okay and you feel like you could do more and you log off feeling really good about what you’ve done that day, but then you go to bed and you wake up the next day or the day after, and you feel like you’ve been hit by a truck. And then when you’re in that state working just isn’t possible at all.
So I think it’s a case of figuring out how much work is sensible for you on one given day, before you get to that state where you’re going to have the awful, awful post-exertional malaise the next day. And trust me, I know that is so much easier said than done. And often it’s the case that we can do a lot less than we think we’re capable of. But I do think that if you are looking at a career over the longer term and looking at how you’re managing your health day by day, it’s so important to do things a little and often, rather than just booming and busting. And I’m laughing at myself because I feel like such a hypocrite for saying it, because this is still… I’ve been doing this for years now. And this is still something that I fall victim to sometimes.
But like you’ve mentioned before, you’ve only got a certain amount of usable hours in the day. It’s not a case of thinking, “Oh, I’ve got all of this free time. And all of that can be dedicated to work.” Because when you are managing a condition, you’ve got to think about rest. You’ve got to think about all of the other medical admin, and learning how to balance that can be really tricky. And as for somebody who is starting out with that and learning how to do it, I think it’s just a case of trial and error. Again, I wish I had a better answer, but I think it’s just a case of testing how things go and how they are afterwards. And again, taking on less than you think you’re capable of, I think is a sure fire way to start building up that stamina because you can always take on more afterwards.
Natasha: Pippa says careful consideration about your own skills and talents can help too…
Pippa: Ever since I was diagnosed with my chronic illness, I had a very set idea that I wanted to be a freelance writer. That was the goal. That was what I was single-mindedly aiming for. And it quickly transpired after I was lucky enough to start doing that work, that it is very, very difficult to sustainably work as a freelance writer in the capacity that I wanted to. It’s very difficult to earn an income, because the fee that you are paid doesn’t always equate well to the time and energy that you’ve put into the role. So it took me a while to get here, but I began to look at the writing skills I had, and with that, the research skills, the communication skills, the understanding I had of disability and chronic illness and think about what other roles could I use those same skills, and enjoy using those skills, but in a different capacity?
And I had never heard of a communication consultant before. I didn’t even know that was a thing that existed. But when I started looking at job descriptions and how communication consultants were utilised in other organisations, I began to realise that this actually perfectly matches all of the skills that I’ve been trying to utilise in the work I was trying to do before. But the energy envelope you need for specific tasks on specific days is a lot lower. So I think it’s a case of looking at the things you like to do and figuring out, within those tasks, what is the specific skill that you like and what other roles might that be more suitable for. And again, I think it’s just having that flexibility of mind to consider that even though this isn’t what you set out to do, there are other things that might be more sustainable for you in your unique situation.
Natasha: I can relate to what Pippa says here, and I also feel like a massive hypocrite. I guess all of this ties back to the conversations I’ve had with my Occupational Therapist Jo Southall around pacing and avoiding the dreaded boom and bust cycle. We have a couple of episodes on those things that I’ll link in the show notes.
We need to apply those principles to our work lives too. It’s something I’m focusing on at the moment as I’m struggling, as a self-employed person, to get the balance right. If I don’t work, I don’t get paid. There’s an interesting conversation to be had about self-employment and freelance vs employed, but I’ll save that for another episode.
To help try and find that balance, I’ve started physically blocking in rest time in my calendar throughout my work day and that’s helping a bit – when I do it. I use very aggressive red with capital letters and emojis telling me to rest. But there are still days when I push myself too hard and end up crashing.
The thing that’s hard when your health fluctuates is that it’s so easy to want to make the most of your good days, and push yourself on your bad ones. I got really overwhelmed by it a few weeks ago, but I’ve made an appointment with Jo to have a chat about making adjustments to my work life that I hope will help.
If you work for an employer, don’t forget, you’re entitled to what are known as “reasonable adjustments” to help you be able to do your job to the best of your ability. One of the things that can be hard is even knowing what kind of support could be out there and helpful for you, so I put Pippa on the spot and asked her to list as many adjustments as she could in 60 seconds…
Pippa: Ergonomic equipment, like comfy seats and especially adapted mouse.
Assistive technology, so voice to text software, text to speech software. You can get plugins like Grammarly to help your writing easier if you’ve got brain fog.
Switching webpages to reader mode. There are different household schemes, if you work from home.
Things like Warm Home Benefit to help with additional costs.
If you’re working out of the house, taxis to and from the office, subsidised public transport, disabled parking spaces.
Oh gosh. Oh gosh. Oh gosh. What else?
Support workers or job coaches. A lot of people don’t realise they’re entitled to them.
Learning how to advocate for yourself.
Engaging with training where you can.
Software to help you manage your day better.
Things that make it easier to book in meetings with other people a little bit easier.
Heating pads, all of the things that help you to manage pain on a daily basis.
Having a quiet space in the office if you’re working around other people.
Changing the ways that you communicate with other people, so whether you prefer a phone call or an email conversation, or a text conversation.
Changing your working patterns so that you have meetings at different times in the day, and you do your solo work at different times in the day.
What other things do I do? Oh my goodness. Oh my goodness. I think I got most of them in there.
Natasha: Yeah!
That was a very impressive brain dump and there were so many helpful tips from Pippa, there!
Ellie, who has multiple chronic, physical and mental illnesses, says having a supportive employer has made a huge difference to her life and she’s now able to work full time…
Ellie: A few years ago I had to quit a job which I was working three days a week because it was inaccessible, it was making me sicker and sicker, and I was told any reasonable adjustments would be preferential treatment.
I then started working at my current workplace, which is a Disabled Person’s Organisation where I manage our communications. I started on one day a week, but due to the adjustments and support I received, I’m now able to work full-time.
As well as supporting me with applying to Access to Work, mentoring me through the process, and then helping me access the Access to Work provisions themselves, and things like flexible working hours and structures, the main difference has been attitudinal. There’s a recognition that everyone works best in different ways, and conversations about access needs happen way before the legal reasonable adjustments are even discussed. That includes everything from how I access my work desk, to having a fan provided for me, to providing me with workplace strategy coaching to transform the way I feel in the workplace.
Honestly, the whole thing has reduced the fatigue I experience in many different ways, not least because I no longer have to go through the tiring process of self-advocating at every step. It’s transformed my ability to work and also transformed how I feel about my illnesses and my disability.
Natasha: It’s amazing to hear from Ellie about how much of a difference a supportive workplace can make and it sounds like the impacts filter through to her life outside of work too.
Unfortunately, not everyone is supported in this way, so before we say goodbye, let’s get some final thoughts from Pippa about what people can do when they’re made to feel bad about asking for reasonable adjustments…
Pippa: If somebody is comfortable with it, one of the best things you can do is think about how you can succinctly explain your condition to your employer or line manager. I know that not everybody identifies with the spoon theory, but something like that, that can basically conceptualise your lived experience in a way that makes sense to non-disabled people. If it was me, for example, I would say, “Here’s what I can do on a given day. I’m very happy to do that, but if I do more than this, it’s going to mean that I can’t work the next day. And in order for me to give my best to this role, I think it’s more important for me to be working a little bit every day, seeing how that goes. And then maybe we can have a conversation in a few months time about building that up.”
Just having an open mind. And this is going on the assumption that the employer has an open mind as well, which I appreciate isn’t the case for everybody, but just figuring out between you. I think, where possible, having a collaborative process, where you can have those open discussions and think about working in mutually-beneficial ways. Those are the best situations because both parties feel like they’re getting the best out of it.
Natasha: As I mentioned at the start of this episode, there are some people who are too ill to work (and they obviously deserve care and support) but there are also many people living with long-term illnesses, like me and like Pippa, who with the right support may be able to find ways to work, if we think about things differently.
Having spent most of my adult life starting and leaving jobs because of my health, it has been extremely challenging and disheartening over the years to want so much to work, but not knowing how to do it.
As time has gone on, I have seen things change. Although things are nowhere near ideal, there does seem to be more recognition and support available and more organisations popping up to support chronically ill people and people with energy-limiting conditions. I remember back in the day having a similar experience to Pippa with disability organisations that were in theory helping people find “accessible” work…but not for someone who struggled to show up in person.
So there’s that side of things, the widening of recognition (which has definitely been charged by the pandemic), but also a big part of it was learning to be upfront about my access needs and to recognise how much I have to bring to a role, even if I can’t work in traditional ways.
I want to say a huge thank you to Pippa Stacey and Bruce Daisley for joining me for this episode – and to everyone who took the time to share their experiences with me, I’m sorry I couldn’t include all of your stories.
In our next episode, which will be out in 2 weeks, I’m joined by the brilliant Faye Savory, founder of BearHugs, to discuss how she’s built a business that aims to be as inclusive and chronic illness friendly as possible. It was a fascinating conversation about how work can be done differently, and the structural and social impacts it can have on its employees.
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Aaand that’s all from me. Thanks so much for joining me in The Rest Room. Ta ta for now!
Links
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You can learn more about Astriid by visiting their website.
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- Produced by Philly Guillou at OG Podcasts.
- Episode art by Lucy Dove.
- Introductory music by Amit Rai.