YOU LOOK OKAY TO ME: CHANGING THE WAY WE SEE CHRONIC ILLNESS AND DISABILITY

 A SERIES ON CREATIVITY AND MENTAL HEALTH WITH ORLANDA JAMES, FEATURING JAMEISHA PRESCOD

You Look Okay To Me is a platform talking about all things chronic illness, it covers everything from gentle reminders to take your meds, the breakdown of various conditions and terminology, alongside personal accounts of navigating life with a chronic illness. Founded and run by Jameisha who, in response to a lupus diagnosis just as they started University, was faced with the reality that the industry and career they were training for, wasn’t built with folks with a chronic illness in mind. We talked about managing the platform around a job, detangling from a problematic hussle culture, the aftermath of that hussle’s effect on our mental health and how shaking up the film industry benefits everyone, not just those currently excluded. Below is an excerpt from our conversation, one in a series of talks with different creatives, as we discuss the role of mental health within our creative disciplines.

YOU LOOK OK TO ME YUGEN

Orlanda:How are you? How are you feeling today?

Jameisha: You know, any other day if you had asked me that question I would just give you the British answer - 'oh yer you know, not so bad' - but I've been trashed, can't lie. I think I'm just resurfacing from a depression period for the last couple of weeks. Well, when you take a step back you realise a lot's been going on since January, so I don't know if I've been alright really since then, actually. But you know, because you're surviving you think it's just this little blip but no, it's probably an overarching thing that you're ignoring. But that's a long way of saying I'm doing better than yesterday, which I'm grateful for.

Orlanda: I hear that. And it's not always every day is up, it's not always a linear trajectory, is it?

Jameisha: No, no, no

Orlanda: I always find that hard when you're beginning to climb out of something, and then you have that first day that dips back down, and it feels like oh my god I'm regressing, but look where I was two weeks ago, or a month ago, actually, I'm still making progress.

Jameisha: That was literally what was happening. I mean, I know what triggered this period, it was this really crazy, well, I need to stop saying that, it’s been a really wild, busy time at work. I had a deadline which was very intense and I’d thought okay, when the deadline is gone I'm going to feel better because this pressure is going to be off. But I find a lot of people say that and I think sometimes it doesn't happen and actually when the pressure is off, you can go even lower than that, which is what happened. I wouldn't even say it got lower, I kind of just went numb; I couldn't feel anything, I couldn't sleep, couldn't eat. It was just numbness, which is quite scary because you want to feel something. And then I would have periods where I'm like 'oh, wow, I feel great' and then it's on again and off again which is irritating because you think you got a taste of better, whatever that looks like, and then it went backwards. But just as you said healing isn't linear. That is life, so I try not to be too hard on myself about it as well.

 

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Orlanda:
Which is something that both of us struggled to do while organising this interview, lots of 'I'm so sorry for getting back to you late' and rescheduling on my part too but I really appreciated that even though we both said sorry too much probably, there was that safe space to take as long as we needed for our respective stresses and jobs and mental health - it’s quite a rare thing. So what is it that you do? Because I do this but to pay my bills I have, like a regular-person job. Are you the same? Are you also trying to balance between the two?

Jameisha: Yeah. So, in my day job I work for BBC Africa. I actually have a new role where I'm trying to run their YouTube channel properly. They needed someone that can curate and create content focused stuff that's still news but reaches our audiences better and especially our audiences on the continent. So that's what I do to pay the bills and then on the outside, like you, I run a platform called You Look Okay To Me where I make content about chronic illness. Just trying to do that as much as I can, I would love for that to be the day job at one point in my life but we're not there yet.

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Orlanda: It's an incredible platform, I have benefited personally so much engaging with the stuff that you post and also, you have a website, you have Instagram, you have YouTube, like there's a lot of content to be doing outside of an already pretty cool and also very demanding day job, and you also film stuff and things like that as well, right?

Jameisha: I tried to I mean, I've had less time to do film these days which is sad. I'm trying to find this triad middle ground to try get film in all of these areas in life but I've had less time. I mean, I made a film last year with my partner just because he applied for some random funding but it was more like he did the music and I did it on my nan. But I do want to get to a point where they're a little bit larger than that, more like documentary type stuff... at one point. I don't know where, when, and in what time I'll be doing that but yeah, that's the aim.

Orlanda: You were saying about hitting that numbness and plateauing after having a really busy period, which I definitely resonate with. I feel like what we're capable of and what we can actually handle are two different things; we push ourselves to the extreme, because we have to, because we have this, this and this job. And I feel like generally as young creatives especially, you're told that the grind and the hustle is part of it, like you best be hustling all the time, that's required for you to have this amazing story about how you didn't sleep or eat for 10 days but then you produced this amazing piece of art. Which just feels like a standard narrative but actually then when all of that stops, your body's like 'hey, by the way, that was unsustainable and now you're going to pay for it' and I'd imagine that's made so much worse with the lupus and with everything else that you also have to go through.

Jameisha: Yeah I mean I think, as you well know, there's this romanticization of suffering for your art, suffering for creating, as if it makes the backstory more interesting when we're all hopefully accepting some kind of recognition for that work. And besides just that it's a bit of Capitalism, isn't it? Like that's what's rewarded or even what seems to be rewarded and it's not healthy for anyone, let alone if you have a chronic illness, let alone if you have a mental health condition or whatever, it's not good for anyone. I was having a conversation about this the other day. I don't want to romanticise it but it almost feels like to survive in London - this representation of Capitalism - I feed into it despite the fact that I don't want to and know it's not healthy. I'm a big hypocrite really, I'm a self admitted hypocrite as I like to say as much as I can to others and to myself too that actually, rest is productive - and fuck productivity in general - but rest actually is good for you and you need to take time for yourself and I do try to live by that but there are many instances that I don't because... I don't know, because of the indoctrination of this Capitalist concept that we're all buying into.


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Orlanda: Agree, I think that process of decapitalising our minds is a fucking huge ask and actually, getting to a place where you can identify where this is problematic, or this bit I shouldn't do and all of that is great, but you also have to accept that we live in a society that is driven and sustained by Capitalism and trying to exist completely without it is a huge ask - I don't know that anyone truly, genuinely can, we all end up having to be hypocritical when we're engaging with the concept of anti-capitalism and still existing in this world, this system.

Jameisha: Precisely. It's so hard and just to touch on where you were mentioning chronic illness, in a weird, backwards way because of my chronic illness and before I started to learn a bit more about how to be nicer to myself, I was often working harder than everybody else. There's already a perception that people with chronic illnesses, disabled people, that we are not worth as much as other people, that we can't do as much as other people and a lot of that is down to actual societal barriers, not because of our lack of ability - they say lack of ability but you know what I mean - and so a lot of the time we push ourselves even harder to prove ourselves, to be visible; 'look see, I can do it'. And actually, it's to the detriment of our own health and I was doing that a lot. But then, we often have to reinvent what we're doing because of the fact that we're blocked from the traditional route and you end up working harder because of that as well. So for example, I went to uni for film, I wanted to be a cinematographer which if anyone reading this doesn't know, is probably one of the most physical parts of film, the stuff you're carrying is really heavy and it's for long periods of time, you have to be a fairly strong person for that role. And then I got diagnosed with the disease the same year I thought I was going to be doing that and I realised, oh shit, first of all I can't really hold a camera let alone be a runner and stand on set for 16 hours in a day. So I did make You Look Okay To Me as a response to that but what that means is that, and not to say I'm working harder, but that's a whole beast in itself to have to create your own lane just because the industry won't let you in - because you're disabled.

YOU LOOK OK TO ME YUGEN


Orlanda:
Mmhmm it's then having to find a way of showing up in a parallel position so that you're still counted in that field, you're still part of that discussion. But finding that parallel is a whole set of retraining as well. Like so much of everything you do with this platform, there's a huge range of skills within that one job that, again as we've said, you're doing outside of the job that pays the bills and takes up most of your time.

Jameisha: May I ask what's your job that pays the bills, outside of the things that you do, just out of interest?

Orlanda: So I started during the second half of the pandemic to do freelance work in film production, in a team within set decoration. My background is fashion, so anything with a sewing machine is my specialist skill set but I do upholstery, drapes, car interiors, I mean it's quite a range it depends on the film.

Jameisha: That's so sick!

Orlanda: Before that I was unemployed for maybe a year and a half and on benefits so it's very nice to make money again and that has provided a lot of opportunities, but it also means that the work that I really value and that I would really like to continue to do gets pushed to the sideline. I'm definitely working at the moment to figure out how to successfully find that balance and to get enough time to protect my energy and my health physically whilst working 14 hour days, five days a week.

Jameisha: Those same days I was talking about, d'you know what I mean, like just as you said that now like, that's hard.

Orlanda: Mmhmm, unsustainable as well. I'm at the point I need to figure out how to, yeah, work part time is what I would like to do really.

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Jameisha: I wish there was a way we could upset the fucking film industry, because I just don't think that that's okay. Like, that's what's accepted as the standard. That is standard, you're living it so you know more than anyone. I just don't think that's acceptable for human beings to be doing, I'm sorry I don't, like I just... and oftentimes, it's the people behind the scenes that are really the ones that feel it. Like, you know, I'm not saying nobody else works hard, everyone on that set works hard but there are some roles that can dip in and dip out and then some that you are just there the whole time. And you don't have to be disabled for that to not be beneficial for your health. I just don't think it's okay. I know it's a tangent, sorry, but it just bothers me.

YUGEN ORLANDA

Orlanda: No I think it’s an important conversation, it comes back to Capitalism again, it's that hustle culture, that grind where you're expected to work 14 hour days. Like you said, it's obviously worse for certain people, but as a general rule it's not beneficial to anyone, no one's mental health is doing well from it.

You can learn more about Jameisha at You Look Okay To Me or across all major social media platforms @youlookokaytome on Instagram, Facebook and YouTube or @JamPrescod on Twitter. I’d also recommend supporting Jameisha on www.patreon.com/youlookokaytome for that really exclusive access.


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