We just launched the first episode of The Ampersand Podcast, entitled “I Am Not A Human Resource: Living With Chronic Illness and Disability.” Listen to the full episode here or read the full transcript below.
Welcome to The Ampersand Podcast, where we discuss themes of mental health, wellbeing, and self-care with people who inspire us, from creatives to campaigners and more.
In this episode, Josie Deacon interviews writers Julie Farrell and Ever Dundas about their experiences living with chronic illness and disability.
Julie writes creative essays on mental and chronic illness, which have featured in the likes of Ampersand and Counterpoint magazine. She is an author of fiction for young adults and has just completed her debut novel, Fractal, which explores themes of mental illness, identity and self-discovery. She can be found on Twitter most days, shouting about disability and/or writing. Julie has fibromyalgia, Ehlers-Danlos Syndrome, and generalised anxiety disorder.
Ever Dundas writes literary fiction, horror, fantasy and sci-fi. Her novel Goblin won the Saltire First Book of the Year Award 2017. Ever is currently working on her second novel, HellSans, a sci-fi thriller, which has disability as a central theme. Ever has M.E. and fibromyalgia.
For more information about M.E., fibromyalgia, and Ehlers-Danlos Syndrome, see our episode description for links.
Josie: Okay, thanks for joining me today. Could you tell us about a good day and a bad day? How do you navigate your daily responsibilities and tasks with chronic pain and chronic illness?
Ever: Well, it’s basically for me, it’s about planning management and pacing. It takes a lot of figuring out. And it’s not just the chronic pain – I mean for me, it’s the exhaustion that really disrupts my day the most. The exhaustion is not just about being tired; it’s more like flu-like exhaustion. So if you had the flu but basically permanently, it is a good way to describe it. A lot of people just think “You’re just a bit tired.” I have both M.E. and fibromyalgia, and the exhaustion is quite a big part of both of those as well as the chronic pain.
And also, another thing that we don’t really talk about it is the cognitive difficulty, which people with M.E. call “brain fog”, and people with fibro call “fibro fog”. That affects your work as well. Trying to manage through a day is about planning, making sure you have lots of rest before you do stuff, and lots of rest afterwards.
Julie: Pacing is something that makes all the difference for me, as well. I was doing that before I was even diagnosed, I’ve been pretty much pacing since my teenage years. I was very easily exhausted as a child. For example, I could never compete in sports at school and stuff like that, and the other kids would be tearing ahead of me, and if I had to participate in sports for a day I would go home and crash out on the couch. Tiredness has been part and parcel of my life for a long time. I can have a full day but then the next day there’s going to be no plans. It’s about allowing downtime and sort of managing for that and planning for that.
Josie: Another misconception I saw – I think you were tweeting about it, Ever – was an article by this horrible man (I can’t even remember his name) saying that people with chronic illness don’t even want to get better.
Ever: I have a few notes about that…That article really bothered me. I don’t want this to be a pile-on of this author so I’m not going to mention his name. I also don’t want to target an individual because I actually think his article is an indication of a general problem in terms of the romanticisation of illness and particularly the romanticisation of illness in terms of artists and writers. A lot of it happens particularly in terms of mental health but I think general illness, and it really bothers me. There was this awful quote from it where he’s talking about writers throughout history who have been ill. And he says, “Their sickness added to their authenticity as writers.” Don’t get me started on that. “They were too cerebral or too sensitive for the demands of the world. Their suffering brought to their work depth and insight that were unavailable to others.” And I honestly cannot stand this romanticisation of illness. I really can’t. And also the idea that artists and writers have a talent and we hone our craft, but we’re not any more special than someone who is, say, a window cleaner. Or even anyone else in their field who hones their craft or has a talent. I really hate this almost deification of writers and artists.
Josie: It’s “the suffering artist” isn’t it? You can’t create “true” art unless you’re suffering.
Ever: Yeah, exactly. It’s horrible…
Josie: Like, Van Gogh should have been helped. Even though he created amazing art he was not well and it led to his death, and we shouldn’t romanticise that at all. It’s tragic. Just because through his pain he created good art doesn’t mean that he should’ve accepted his pain or that they go hand in hand. They don’t have to go hand in hand.
Ever: And also the way in the article, he talks about illness as opportunity. Which I find really bizarre. I think that smacks of privilege. Most people if they are unable to work and don’t have any support systems in place would end up in poverty.
Josie: Opportunity…what? It’s not an opportunity.
Ever: I’ve never felt this illness as an opportunity. If anything, it’s been the opposite. My thinking – I don’t know anything about this man or his background – but if you’re going to write something like that then he clearly has an income or some sort of money to fall back on. I’m sure he didn’t have to sign up to the Tory benefit system which is utterly horrendous and, again, sucks out all your energy and time and takes away from the opportunity to write. So it’s not an opportunity at all.
Julie: No! No, far from it! And we’re going to be talking about diversity – disability diversity particularly – in publishing, the opportunities are very few and far between. There’s next to no opportunities out there for disabled writers.
Josie: It’s a sense of that…they deserve that. That they deserve the suffering so they can create art and it’s part of their inspiration or their muse. When actually, why can’t joy be a muse and inspiration? Why does it have to be suffering? Maybe that’s what he’s talking about by opportunity – which I fundamentally don’t agree with because he obviously doesn’t understand what living with a disability is. It does reek of privilege.
Julie: I’ve definitely had interactions with friends, people I know, whoever, who…they’re not creatives exactly, who are very much living a life that’s pounding a 9-5 drum. And, yeah, I mean people do look at you if you’re a creative and you’re not working – particularly in my situation at the moment, I’m not currently earning or able to do other work apart from writing. These people have actually said to me, “I wish I could be at home making brunch, and y’know, sitting at my computer for a few hours, that looks great.”
Ever: I think that isn’t just ignorance of illness and the effects of illness, but also a general attitude towards artists ( “artists” encapsulating writers and everybody) I think there is this attitude that we sit at home and just potter about and maybe write a sentence or something. I had someone say to me once, “It would be so good if I could just sit at home, daydream, and just bash out a novel.”
Julie: Just write a novel! ‘Cause it’s so easy to do. Only takes two years!
Ever: It’s honestly the hardest work I’ve ever done. It is so hard.
Josie: It’s so gruelling. It’s juggling loads of things. Actually, a 9-5 job is quite cushy – or maybe that’s just being a bit mean – but it is quite easy compared to working freelance or working for yourself. Because you can’t just go on holiday, you’re not going to get a paid holiday. I’m not saying 9-5 jobs are easy, it’s just that you could sit in the office and not do work for an hour and it’s fine because you’re still getting paid (as long as the boss doesn’t notice) but you can’t do that at home because…
Julie: Every hour counts. And that can lead you into that awful territory of burn out. I was freelancing when I had my breakdown and my burnout that led to my diagnosis of Generalised Anxiety Disorder and EDS since then.
Josie: Talking about disability and publishing, a lot of publishing houses and writing hubs have been bringing out mentorships and awards and writing retreats – do you feel these that are accessible to people with disabilities?… Judging by your faces, no!
Ever: We both just gave each other the side-eye!
Julie: It hasn’t been that long that I have really been looking at the opportunities that are available from the point of view of a disabled writer but… There have been things that I have seen and applied to, so for example, the Jericho-Marjacq Bursary for Underrepresented Voices. That’s run annually and is a fully-funded bursary, including travel costs, to go down to their festival of writing. Which is a fantastic opportunity to meet agents face-to-face and hear from publishers and editors and various industry professionals. And I was very lucky that when I applied last year I was one of the runners-up for that, and you know, that led on to an agent getting in touch with me which was great (who I still haven’t followed up on because I’m nervous!) So that is something – but that is only one opportunity, once a year, 5 people in total get pulled out of a hat so to speak, and that is a relatively small amount really when you think of how many writers are out there that are gonna be marginalised in some way.
I think the lack of support is really in the writer development. So, you might find things like… I write contemporary young adult, so all the stuff I’m aware of is stuff to do with that genre, but for example, online you’ll have sort of… tweet sessions where you can actually pitch to agents for a day using a certain hashtag and hope that someone likes it enough to say “Send me your manuscript.” So … DVPit, PitMad, PitchWars, Write Mentor do it as well. And quite often when you’re researching the publishers or the agents that are interested, they will often say that they want to hear from diverse and marginalised voices, they are interested in that, they want to have representation in their books. So that’s great – but when it comes to actual writing opportunities and how you can develop your craft, that’s where I’ve found that there’s a lot less access.
Josie: And also, you’re saying that there is a fund for diverse voices – but that is so big! ‘Cause that means anyone who is not a middle-class, white man – possibly female as well, straight…
Ever: Me and Julie have had this discussion before – I’m hoping it’s not lip service but it is good that they are trying to encourage diversity. But whenever there is a list of, say, LGBT, people of colour, it’s generally the fact that disability is just left off the list, it’s not even thought about. So it’s not easy in general for writers to earn a living – everyone knows that … well, writers know that, I’m not sure the general public do! But when you’re chronically ill it’s extremely difficult because we might not be able to do the freelance work to make ends meet, and we might not even be able to work part-time never mind full-time to supplement our writing career. And another thing is travel with writing retreats and fellowships – I personally deselect myself from these and I think it’s a mixture of access but also my actual impairment, because I do find travel really stressful.
Julie: Same. We talked about this – we both rely on our spouses to help us.
Ever: To help us when we’re travelling!
Julie: I don’t think I do any travelling apart from the train into town on my own – I can do that.
Ever: I have managed some travelling but I can be a bit anxious about it. And again, for disabled and chronically ill writers – I’m sure other people feel this, but I rely on my phone a lot. It’s a real comfort that I can easily get in touch with people or I can use it to distract me if I’m anxious about travelling alone. Travelling can be really difficult when you have a chronic illness. You feel vulnerable.
Josie: Do you find your mental health suffers because of your disability?
Julie: My chronic illness and my mental health issues do go hand in hand and they feed on each other and feed back into each other. But, yeah, I think there have been times where I have gone to the GP in an emergency situation and sat down with someone and said “I need help right now. I am struggling to cope. I am not coping well. I am spiralling regularly.” And… those are the days when they say, “It’s going to take at least 6 months to get you someone.”
The NHS doesn’t serve you on an immediacy kind of level. If you’re disabled and don’t earn, you don’t have access to private therapy, so you’re kind of on your own. And again, that isn’t great.
But, those moments of my life I have been able to overcome eventually myself, and that is down to support from friends – and the same as Ever, my husband works full-time, and I’m really lucky, but again I could be in a way worse off situation and I know that is a protection against my own mental health getting worse… That I have that kind of security and stability with him. And that he is so used to it now and so understanding of the condition – he doesn’t even have to think about it, he can on any given day come home and get how I am. And if he needs to do everything in the house, for example, for 3 days straight, it’s fine. So that kind of helps. I think there could have been times where, you know, my ability to look after myself isn’t always there, and if you’re completely on your own I can’t imagine how that would be. And I know how much I rely on him, and again, friends and family, people who you can talk to who can actually understand what you’re going through. That is so important, especially when you’re feeling isolated. The NHS can’t help you or get you someone to see ‘cause you’re on a really long waiting list. My first appointment took 18 months actually, when I was saying “I know I need mental illness help.” So yeah, I think that’s something people don’t see and they don’t realise – how much you do kind of have to put on other people. And they are great and it’s not necessarily burdening them, but at the same time you would be much, much worse off without it.
Ever: Through this whole journey I’ve been extremely aware of how fortunate I am, especially when I went through the benefits system. I really kind of, understood how fortunate I was having the support that I did when I went through that. I was thinking of all the people who didn’t have that support, who maybe are on their own, and how utterly gruelling it would be to go through that as well as dealing with whatever their chronic illness is putting them through. And I just find that really shocking, that the benefits system which is supposed to be a support net, makes people suffer and ruins their mental health. I just find that utterly absurd. And the fact that I felt that in a slightly more fortunate position than most people, is just really worrying and really scary. The system is broken. The Tory government have destroyed the benefits system completely.
Julie: It’s so punitive. If you see these assessment forms… I tried, I started an application for Personal Independent Payment and the questions are…
Ever: They’re not relevant.
Julie: They’re not relevant, they are hugely specific whilst not being relevant about the activities you can do. So if you can dress yourself and make yourself some beans on toast you’re not going to get anything.
Ever: It’s a point system. I remember when I went to try and do it, I had an appointment with the advice office who were absolute lifesavers – Edinburgh Council’s advice service. I remember trying to do the form myself – and here I am with a, you know, a degree, and an MA, and my mental health is fine, and I couldn’t fill out this form. I tried to fill it out, I thought I had done it in the way that I should, and the advice person that I went to, she was like, “Oh no, no, you’re not telling them what they need to know.” And I basically just described my life and how my illness affects me and why I had to give up my job, and you’re saying they don’t need to know that? Surely that’s the relevant information? And she said, “No, you need to hit these points that they are looking for.” And I’m like, “But most of those aren’t relevant to me, how does this make sense? Why do I have to contort myself to fit in with this?” I don’t understand.
Josie: I wonder if it’s automation, where they have those computers doing it and if you get a certain amount of points then they put you through to an advisor.
Ever: I don’t know. I’ve no idea, but it just… Illnesses like ours don’t fit in with it.
Ever: And you even hear horror stories in the media where illnesses like, I don’t know, cancer…or, you know, other things where they don’t even get points needed. It’s utterly absurd.
Josie: The rollout of Universal Credit has been detrimental to so many communities as well. It’s been absolutely devastating.
Julie: Can I swear?
Julie: Fuck it. Fuck you for making me have to go through this and have to fit these boxes that are just stupid and… making me feel, like we were saying, like I’m not a human, I am not deserving.
Josie: With PIP and stuff,, the expectation should be that this is something that you’re going to be on for certainly a long time if not forever. Which shouldn’t be a bad thing. This is why we pay National Insurance, this why we pay taxes.
Ever: You shouldn’t feel guilty about needing this.
Josie: You’ve paid money for it.
Ever: It should be a positive thing, it should be there for you if you need it.
Josie: You’ve paid money for it. Your parents have paid money for it. Your friends have paid money for it. People have paid money so that, when – if it’s ourselves or someone else – falls into a situation where they can’t actually earn money…they have, it’s…That is what National Insurance is. It’s insurance. It makes me so mad.
Julie: Well you know, capitalist world and all that!
Josie: It’s the notions of productivity isn’t it?
Julie: Yeah, I think it’s that. Your worth is: can you earn money? You’re not going to get any support.
Ever: People aren’t worth anything if they can’t work.
Julie: Yeah, and I think that so much of the dialogue around support for disability is always bookended with-
Ever: Getting them back into employment.
Julie: Getting them back into employment. And that is a great thing and a lot of us want to work…
Ever: But you hear lots of stories as well with people not being adequately supported back into work, they just shove them into work…Or even if it’s low paid or whatever. It’s just…It’s not good enough. It really isn’t. I absolutely despise the terms “earning a living” and “human resources”. I am not a human resource. I shouldn’t have to earn a living to find worth in myself.
Josie: I’m sure I’ve seen people talk about that notion of…if you work a certain amount of hours then you don’t get benefits, and a lot of people don’t work because otherwise if they worked a little bit, they’d have less money than if they worked. People wonder why a single mum is not working, and it’s because if she worked the number of hours she could work whilst still being a mum, she would actually have less money than if she didn’t work and was on benefits.
Ever: And then you get scapegoated and stigmatised when it’s not their fault.
Josie: Exactly. If they can’t work full-time because they have 3 children to look after, but if they could work part-time, but they can’t because if they did, they wouldn’t have enough money, they’d get penalised.
Julie: You can’t win. That’s why models like Universal Basic Income are something very much of interest when it comes to providing a security blanket or a safety net for disabled people. And I think that… That’s certainly something I support and I know that there have been feasibility studies that were run that kind of tested that. And actually, last year at the [Edinburgh] Book Festival we attended an event that was talking about the subject. It had a few people on the panel: two people who had written books that were pro-UBI, talking about feasibility studies and looking into that. And actually, there has been a paper just published, I think, two months ago by Stewart Lansley on one of those feasibility studies which I still have to read. There was another guy on the panel who was against it…do I need to mention his name? We don’t want to give him any attention.
Ever: I was there with Julie, and I was genuinely interested in the argument against UBI – I still am, I would like to know more about the pros and cons… But this guy was just so utterly arrogant.
Josie: They always are, aren’t they? I love the Book Festival, but there are so many arrogant white men on panels who just talk and you’re like, “what are you saying?”
Ever: I genuinely wanted to know a proper argument, but he just ruined it for himself. That was so frustrating.
Josie: “People wouldn’t be motivated to work.” You think… People like having a sense of purpose, people like working. And people like being able to buy nice things. People like… That’s why people do difficult jobs that earn more money.
Julie: Also…Travelling! Exercising! Yoga! All the things that cost money that nurture a person as well. People are…
Josie: You can’t afford that on UBI, that’s the point. UBI is enough for you to live and to boost you over the poverty line, but if you want to become someone who buys designer clothes and buys lots of stuff…
Julie: You can still do that.
Josie: You can go get a job and do that. I think if there was UBI, I would probably still have a job because I like…I actually quite like having that routine of a job, and I also like buying nice things. It wouldn’t suddenly make me go, “Well I’m not going to work anymore.”
Julie: Well yeah, I mean, he immediately fell into the old narrative, didn’t he, of, “Okay, so you rolled out UBI and 30% of the population is just sitting in front of their TV.” And at the end of the discussion, we actually – the panel did ask, “Okay, so say a UBI model was rolled out and you were asked to immediately be paying 50% tax to support a UBI… ? Come on, like nobody’s up for that.” And I think it was 70% put their hands up. Most of the people in the room put their hand up, and he just sort of said, “Oh, all you lovely Edinburgh people with your dinner parties.”
Josie: Each fill in a sentence. I’m going to start a sentence and you’ll fill it in, with whatever first comes to your head. It’s nothing weird. It’s just: My mental health is…
Julie: Challenging, is the only thing that popped into my head!
Josie: Self-care is…
Ever: Important. Especially when you have a chronic illness.
Thank you so much for tuning in to the Ampersand Podcast.
If you want to learn more about what The Ampersand Project does, go to www.theampersandproject.com. You can also follow us on social, by following the tag, @theampersandpro.
This episode was produced by Josie Deacon, with additional aid from Cia Jackson and music from Purple Planet Music, which can be found at www.purple-planet.com.
Have a wonderful day.