Disability with Ste Clark, Fi Rooney and Maddy Gunn

Ste Clark - Uncle duties yesterday so I'm a bit achy today but um other than that I'm pretty good

Angus Baigrie - Um what sorry

Ste - Uncle duties but I had my niece, we went to a play barn so it was yeah it's always fun but I always hurt the day after, bless her, she's only two so...

Angus - Hello everybody cracking conversation coming up for you today I've got three brilliant Searchers here to tell me all about what it's like to be disabled.

I'll introduce them in a second but the place that I wanted to start was with words. I feel like a lot of the fear that people have at the moment is to do with not quite knowing what the right thing to say is, so with that in mind can you tell me what terms you prefer and what terms you really hate?

Fi Rooney - I call myself chronically divine.

Maddy Gunn - that's a great great description

Fi - Yeah

Angus - The chortling chronically divine voice is Fi Rooney her pronouns are she/her and she's been part of LifeSearch's client support team since 2019.

Ste - I go for things like less mobile or mobility challenged or if people ask me to describe it I suppose but I don't really there's nothing really I mind.

Angus - That's Ste Clark a tele interviewer or TI he's been here at LifeSearch since 2016.

Ste - Or so far anyway

Fi - Um it's really funny because when you're like what is your disability I think I still have a lot of internalized ableism that I'm still unpacking even after 11 years because I'm like I don't consider myself disabled but it is still a disability you know so that's like I don't have any issues with it any issues that I have with it are issues that I have to unpack myself.

I'm open to anything at the moment and if there's anything that makes me uncomfortable I'll let you know in a positive way.

Angus - Would you talk more about that what was the phrase you used, internalized ableism, yeah, can you I think I understand what that means but can you can you talk about it a bit more?

Fi - Um so we're all kind of ableist in our own ways because we've all been brought up to live in a world that's a very able-bodied space.

It's just when you catch yourself out from like getting frustrated at not being able to do things that other people can do that you should be able to do but in reality you've got this disability that prevents you from doing it.

So for me when I saw a disability and I was just like um i don't like that word but it's my word it's something that I use to describe myself — that would be internalised ableism where I have like this like I saw that instantly and I had a negative association with it where I shouldn't have that negative association with it.

And that's where the internalized ableism is because there's nothing wrong with a disability it's just you're differently able from other people.

Ste - The problem I have with the word disability isn't so much offensive but I always feel a little bit like not, faking's not the right word but that I don't quite qualify to call myself that because I can get up and walk around and I feel like I'm sort of saying I'm as badly off as someone who maybe doesn't have the use of their legs at all or you know something like that.

When I struggle to I know that that is the correct term and because I get disability benefits so it's literally defined um but at the same time I feel like I'm giving an excuse or making like playing of something more than I am if that makes sense.

Maddy - Completely I can relate to that completely I've got a like an invisible illness so you just you wouldn't know unless I told you that that's something that I have and it does affect my life in lots of different ways but only ways that probably I would really know about.

Angus - and finally Maddy Gunn head of Compliance she's worked at LifeSearch since 2005.

Maddy - But I wouldn't look as though I'm disabled or I wouldn't feel as though I could sort of go out and go oh yeah you know me over here I'm disabled although I fit the criteria for and qualifying as a disabled person and my condition is a recognized one.

Not saying that I don't want to be recognised as disabled because I have no issue with that at all but just not feeling like I'm disabled enough to say oh yeah over here that's me.

Angus - So from that do you think that the way, getting quite quite deep quite early here, do you think the way that our culture, our society views disabled people enables those potentially negative thoughts or does the opposite?

Fi - 100%

Ste - I think the sort of stigma around people who claim to be disabled that probably aren't that you read about a lot in the news like oh this person was caught in a weightlifting competition after they claimed they're in a wheelchair and all that sort of thing um which I wish I was joking but that was one I read.

And yeah just the fact that you're very conscious you don't want to be pushed into that band like if I suddenly jump up on my seat one day and somebody comes and says "I thought you thought you went to struggle with that" and it's like yeah I did it one sec it's not that I can't do it all the time it's just ninety percent of the time I can't do it so that that in their head "well he could move quickly that one time.

Therefore the rest of it's, he must be exaggerating" or but even if the person's not thinking that that's what I've convinced myself of just because of their comment if you know what I mean so it's yeah worrying that you're going to be pushed into that category of the people that literally do take advantage of the system that um that shouldn't be.

Maddy - I've certainly got a certain amount of paranoia about it and I know that in myself that I don't want to feel judged by that label if you like and I'm not that I don't think I've ever got an example of people doing that to me at all and I think that's all in in my own mind and I'm very aware that that's me and I'm in my head about it.

But um I do have a certain level of paranoia of not wanting people to judge me on something that I don't think really should be something you could judge people on.

Fi - I think I had um my very first experience of being treated differently by somebody was when I was like eight years old I think it was and I would only come back from speech therapy and went back into class but I had a substitute teacher in who obviously wasn't aware and I came into class he gave out to me for being late and then I was just like I had speech therapy and as soon as I said that word therapy his like attitude completely switched and he treated me like I was a dumb child and I was just like this was like my first shock.

And then I come from like our Irish background when I had TB when I was a kid like we have such a hush hush about being sick and everything you're not sick you're never sick you're only sick if you can't get out of the bed and my granny found out that I had TB from our pharmacist rather than for my own mother so I was just like we don't talk about it.

Which I think also kind of brings in the guilt and the fear of being seen as being lazy and what not just from days like Saturday I was working and because I had to work on a Saturday I just spent the rest of the day in bed which just happens every Saturday unfortunately kind of takes too much after a full week.

Ste - Yeah I know what you mean you hide the bit where you're resting and yeah so people see the bit where you're up and about and this that and the other and yeah it's I think it's well it's like I noticed it when someone mentioned that because when I started with mobility issues when I was about I just look at many a bunch of times um and then this did surgery and made a complete hash of it and that's why I've got nerve damage.

And I noticed people weren't asking me to come and help them move house and you know just things like that which I always being 18 by the time it got to the point where it was having a real effect and it was that was weird because I was so used to being the person that you know "Oh Ste'll help sort of thing and blah blah" and then just noticing that oh you did that without me and didn't even mention it oh all right okay it's nice to be asked and say no I think sometimes rather than just not to be asked yeah.

Angus - Okay so we've already touched on the subject a bit but can you tell me exactly what your disability is? Maddy are you up for going first?

Maddy - Uh yeah so I have a long-term chronic illness and in the probably the easiest way to describe it is my body over produces spinal fluid so it puts too much pressure in my brain and as a result that causes um damage to my sort of my sight.

So I it's like a degenerative thing I'll gradually lose like my previous my peripheral vision but it affects my balance it affects my um spatial awareness and eventually it will start to affect things like my memory and stuff like that um touchwood at the minute it doesn't but I mean sometimes I can pull that one out the bag.

If I've forgotten a birthday maybe and the medication that comes with it uh the things that give you the worst side effects unfortunately and that's a list as long as you're on which is the difficult thing to juggle.

So I get a lot of sort of nausea things like travel are really challenging for me and because the the meds I have you can't control your own and you can't regulate your body temperature very well it makes my skin really photosensitive so I just I burn instantly and at the site of the sun which is really not very um ideal.

It does mean things like I can't have a driving licence because my vision will just black out from time to time and sometimes it'll last a few seconds sometimes it can last a couple of hours and luckily I haven't had it last for a couple of hours for quite some time now but just a few seconds that's a regular thing and I just have permanent um headaches I've always got a headache and but sometimes they range from just what I would call a normal headache to you know severe migraine level.

So it affects lots of different things you find coping mechanisms and you adapt things like fatigue chronic fatigue is a big part of this illness because it just exhausts you and getting through the work week by the time you get to the end of the week you just you you're done you've kind of given all you've got so weekends are very much um repair and recovery time sort of thing it is about relaxing rather than going out and partying like I used to enjoy.

Angus - Uh Ste do you want to go next

Ste - uh yeah and so I well I have chronic pain which basically I had about sort of briefly mentioned there before I kept dislocating my knee and I did it I think 11 times and so they decided to operate and unfortunately when they did they put a screw through my sciatic nerve.

Both times once on the left and once on the right something to do with the placement not being normal for where it would normally be and that sort of thing and so it didn't get picked up for a while they just thought I was complaining about post-op pain until they've realized referred me through to a pain specialist and so who I've been seen since I was 17 and I'm now 39 so I've been going a little while.

So it's something I've always had more or less as an adult so it's always been a factor in play in terms of and what I can do where I can go what that sort of thing is obviously as you get older you get less resilient and obviously over a long period of time it can weigh you down as well plus the meds again are not fantastic in terms of side effects and stuff so I can't drive because I'm basically on strong opiates every day so they tend to frown on that when you're behind the wheel of a car.

So every few years they offer you some like uh psychiatrist to speak to because I had a spinal cord stimulator put in about 2008 which is an implant in your back which regulates the pain through your nerve with the old one I used to get the sensation of like your phone going off in your pocket but like everywhere on my legs all at the same time and then last year I had a new one put in.

And which is a much better one it's the difference between putting loud music on to drown out a baby crying and putting noise cancelling headphones on and it's a lot better it's not by any means perfect but it makes things a lot easier.

As I was saying so when when you go for that they send you through to a psychologist because it's an implant in your body and there's a certain amount of you know they have to make sure you're not going to freak out and want it taken out in a week or whatever and and she just from conversations with me then and went through some tests and said that I probably have Asperger's as well.

And which answered a lot of questions um in terms of uh personality and things like that and which I'd put down to pain being on pain relief and all that sort of thing so that's been a more recent adaptation but again it's the combination of the two that makes things a little bit more challenging day-to-day.

Angus - Fi?

Fi - Yes um so like I said earlier I like to call myself chronically divine I experience chronic pain and chronic fatigue I've done it for about 11 years or so at the moment what we think it is Crohn's which is fun because I've got a lot of digestive issues I get ulcers everywhere which is great I've also got CPTSD which is essentially a stress disorder and stress and stomach issues don't go well together.

I've also got arteritis in my hips and then I got arteritis in my knee after I fell off a climbing wall so sometimes I have to use crutches and and that's kind of it off the top of my head there's there's quite a few other concoctions going on there but without going into them because sometimes they're a bit gross.

Angus - Fair enough fair enough yeah oh wow um being very honest my reaction is just oh my god that's that's such a between the three of you it's such a a massive list of stuff and I imagine that's a quite a typical reaction from non-disabled people is that helpful?

Ste - It's understandable it's a lot to process especially when if you'd know the person and didn't know this sort of thing yeah so it's not uncommon.

Fi - Yeah I'm a bit indifferent from it sometimes I remember I had a friend stay over about two years ago and it was a weekend that I was flaring really badly and because it's like an invisible illness is what I have essentially it was the very first time they've ever experienced me being sick and they were like wow like how are you even alive right now and it was a bit more validating for myself.

Because sometimes I have that imposter syndrome that we were talking about beforehand that I was like yeah actually like I need to stop being stupid about it and cut myself some slack and actually rest up right now because I'm not doing that because of my internalized ableism.

Angus - Yeah okay so so we've already had a bit of an example of this but what are the major things that non-disabled people do that really don't improve your day.

Fi - Um for myself a big one particularly when I'm going through a flare I'll try to be as tolerant as possible but when I'm a bit more on edge and just uncomfortable I know that my kind of temper is a bit shorter I hate being told that like I hope you get well or I hope you get better because it's a chronic illness like it's chronic um and I've had to grieve myself and my past life and accept that it's always going to be this way.

And so I'm like it's not it's just my normal so I don't need that sympathy but I understand that like you probably don't feel you're probably that uncomfortable that you don't know what to say and it's the only thing you think that you can say yeah.

Ste - I find that like parties and weddings and things where you see people you don't see very often it's the first thing they ask how the legs or how's the back it's like well as I told you the last four times that it's going to be like this forever it's it's not a great deal different so and but I think that that is definitely an annoyance.

Because I don't mind being asked if I'm alright because it's nice to know that someone's considerate just don't make it the first thing you ask me every time you see me and maybe ask me something different another time or you know like there's 900 other things going in my life just maybe mention them first or you know some change the subject.

Fi - Yeah because our disabilities are part of our identity but they are not our identity they are not who we are.

Angus - Absolutely.

Maddy - I think exactly that I would agree and I think sometimes people they don't know what to say so they say something rather than just thinking about I don't know how did that gig go you went to last week it's just oh how are you feeling how's your condition how's this and because they know it's something about you and they think well I better check in on that and they just sort of panic mode into it rather than thinking actually you know what they probably don't want to talk about that it is every day is you know it's not going to change it isn't going away let's let's talk about some good stuff.

But I I've been I also don't need people to fix me either I've been told have you tried eye drops have you have you tried this what about if you do that no you're not my neurologist it's really not gonna it's not gonna work.

Ste - It's like you'd have just given up you know like oh three things didn't work so at least generally speaking if there's something that everybody knows about you've probably tried it.

Maddy - It's all done with the best intentions.

Ste - yeah exactly

Angus - I'm the expert.

Fi - My favourite one was I was told to try apple cider vinegar after seven years of chronic UTIs and I was like I think I'm going to listen to the healthcare professional right now, thanks though.

Ste - Everybody's a doctor of some kind especially in this job.

Fi - Oh i think a big one as well is when people tell you that you don't look sick oh yeah that's that's a really big one which just doesn't need to be said um because i think they're trying to like make you feel better about it because oh you don't look sick you don't look that bad so like it's okay.

But again that's an internalized ableism thing and right there you're kind of telling them that not looking sick is the better option when reality you're kind of sick all the time and it's part of it being an invisible illness is that you're not going to see it.

Ste - Definitely i find it's weird with things like that like saying a bus if you get on and me stood there unless you saw me trying to get up the stairs and you wouldn't really notice that I was walking any different or anything because I've made a concerted effort to make that the case so it sort of backfires though because quite often you'll see lots of very able-bodied people sitting down and I don't feel like i can say do you mind if I take your seat I'm really struggling to stand up here because they'll look at me and think well he's like 30 odd years old and he looks fine sort of thing.

So I tend to just hang on to the thing and stand there for the rest of the journey sort of thing so it kind of works two ways one that like you say you get people asking you saying I'm telling you all the time you look okay but at the same time looking okay means that sometimes some considerations which might be nice don't get don't get offered out which can again it's not really blaming anyone because it's not their fault uh it's just frustrating.

Maddy - Sometimes it's my fault because I'm quite private about some stuff so I don't always share it and i don't always offer it up about myself either because I don't particularly want to. It's not the first thing people should should or need to know about me so yeah sometimes I probably don't do myself favours with...

Ste - Yeah I'd feel I feel like developed a stubbornness which you kind of need when you're dealing with some sort of something on this line you need to be able to just grit your teeth and crack on but at the same time it can sort of count against you because you'd stubborn in the fact that you could probably do something to help yourself but no one else is needing to do that so why should i do that and it's like yeah what am i proving who am i proving to?

Angus - So your experience within within LifeSearch and how LifeSearch handles this as a company what what's being done well and what isn't being done so well?

Ste - Um I've always had generally positive experience in terms of i was upfront in my because I knew when I interviewed like five years ago that I was going to need surgery again in the next few years so I mentioned that and I from going through a lot of interviews i feel like that was probably off-putting to a lot of companies because the reasons I was given for not getting jobs were a bit odd um but then they were fine and they were just like yeah but we know we appreciate that up front um and I don't think it paid any part in their decision towards taking me on.

The only thing that makes me very nervous um when you start I believe it's um 10 days sick pay you get oh and then it goes up to 15 after a certain number of years and then obviously obviously that 15 days taking you up to three working weeks and i believe the income protection starts at 12 weeks I've never actually been off that long touchwood so it's never kicked in but there's the whatever it is two and a two in a week month gap between yeah getting yeah last six weeks sick pay and the start of your um income protection.

I have absolutely no plans for it for me to end up the surgery going wrong and end up having to be off for three months four months or whatever else but I can't say it definitely won't so it it can make me a little but at the same time i get why you can't just have indefinite sick for everybody because life doesn't work like that and companies wouldn't survive if that was the case sort of thing so that's the the slightly nerve-wracking bit and again it's like I think I probably had a lot less sick than a lot of like say healthy people you know I mean generally speaking for just colds and coughs and things.

Maddy - Sure I think a lot of people would find themselves in that position being honest a lot of people don't have savings to fall back on anymore or you're only two paychecks away from homelessness or something like that isn't it the tagline that they use.

So if if you were to lose your income because of your sick paid running out and waiting for that income protection policy to kick in which is great policy that we've got you know once it does kick in there is a gap to cover and if you haven't got enough savings to bridge it or family that can help out for that period of time it is a genuine concern for people like us that do have those long-term chronic sort of illnesses or conditions that you it does factor into your thinking.

It's something that's always in the back of my mind okay well the benefits that i get through my job how can I use those if something was ever to go lucky I've never had to rely on them touchwood but that's not to say that won't ever be the case.

Fi - I think um if you've worked in a job before LifeSearch as well there is a bit of a culture shock that comes with it and because I do think LifeSearch have this amazing attitude towards it.

I remember in my interview I said that I needed a standing desk and without any questions i was given a standing desk on my first day where in my last job I do actually have quite a bit of trauma surrounding my last job and what to do with all my medical stuff they stopped me from going to the toilet and it made me very very sick and I had to take two months off work because of it despite the fact that I told him that if you stop me going to the toilet I'm going to get sick.

So it was that kind of pressure where sometimes you might be too sick or have too much of a flare to work that one day and it's better to have that one day off and then have a good week of actual productive activity then having a whole week off and then your team is left picking up and whatnot but there's so much stress that comes in from other companies because you don't want to be too sick to work and x y and z that you know myself when I've got like a stress condition that actually triggers my chronic condition and it becomes into a vicious circle.

Having that kind of relief here i think i was having a flare or something one day when i was working in Leeds and my TC was amazing and she was like no you need to go home because it's better for you to go back tomorrow and have a good day of work and just having that kind of understanding was a huge thing that I was just like uh I've taken like the least amount of sick days of my life working in this company just because i don't have that pressure um and it has a huge build up effect.

Maddy - I was diagnosed whilst working at life search so I've only ever experienced disability at this company um and was fully supported from the moment that it happened and um you know was given um the support I needed to um just sort of find my way with it find my own sort of coping mechanisms once we discovered what was going on and what i needed to do.

Just sitting in the right places in the office so that I wasn't under too much electric light and i had enough you know daylight and things like that and being able to sort of spend a day a week at home just to get away from the noise and the bustle of it all to give my head some sort of time to catch up and relax when my headaches were bad and things like that but still be able to be productive and effective with my work and all of that kind of thing.

So I've not luckily thankfully for me I've not had a negative experience with with it in the workplace and for me that's you know all credit to LifeSearch.

Ste - Yeah i think the first time I realized it when I started I tend to it's not the same but a similar thing like a cycle the more tired i get the more pain i am the more pain and the less I can sleep and it goes and it triggers spells of insomnia and and it was when I just first started so I was like right I do not want to be off so and then my manager at the time.

Stef just after a few days you look knackered and it's like are you all right and I explained and she said well just take right we'll book you in two days holiday you're not off sick as far as you know you're on holiday and we can manage with that because we weren't full calendars yet or anything like that and I took a couple of days off slept like a dog and then came back and sashed it for the next you know I wasn't off again I think for another three or four years.

So yeah it was just nice because at my old place which I was it was a very big company they see it as oh so you've got insomnia then I thought it was chronic pain it's like it's they've got a box to take and it's like well I can't you know it's one or the other it's always no it doesn't work like that. it's that one day and so this causes that and this was that but whereas here it was a much more like sort of rational approach to it if that makes sense um which was nice to see.

Fi - I also like the fact that it was the the no questions asked approach as well when i asked for my standing deaths because like when you have spent the majority of your life or these adult lives living with a chronic condition it's so tiring having to go to like a new GP or something like that and explaining like you go in with like a four-page essay as to what you've got and you teach them about the condition that you thought in your history don't you.

Like one of the reasons i actually moved over to the UK was the year that i the last year in Ireland I think I spent about three grand on my health care because we don't have like the NHS and going to just a GP visit is 60 euro and and so i moved over here for the NHS I'm one of those immigrants who's abusing the system um but it was it was really really exhausting having to go through three GPs which is also like really lucky that was only three GPs just explaining the whole system and then starting it from route 1 all over again.

Ste - I keep offering appointment letters to show I'm really going to and they're like no it's okay we believe you!

Fi - I think I asked if I needed to give a doctor's note once and my tc at the time was like why just nice to be trusted there's a lot of conversation on at the moment about working from home and how with the pandemic touchwood coming to an end how that working for home not for LifeSearch but for other places might cease can you talk about how what that lack of flexibility and and making you guys come into the office how that would affect your life.

Maddy - For me I think um i enjoy having um a mix of being in the office environment and at home as i mentioned before just to give me um that quiet space to get my head down and focus or if I'm I'm feeling like I'm you know I've had a heavy week and you know i need some time out from the noise and the bustle.

Because the Milton Keynes office is very open plan it's very loud and it can get quite noisy in there and when you're trying to concentrate or if you're getting towards the end of the week and like me your headaches have got worse and worse as the week goes on it's sometimes you need that quiet space sure.

And for me the the biggest difference is the travel because i used to you know go up and down to the different offices or in and out of London for conferences and things like that that were happening and since I've stopped doing that level of travel it's always something that's challenged me since my condition because of the the way my sort of condition and my medication interact with travel and things like that I've been able to decrease the amount of medication i was taking because the effects of the travel haven't been so bad so I'm nervous about increasing that again.

So that's something for me to really think about and think actually how how much do I need to do going forward and how much can I continue doing virtually because what i really would like to not have to do is whack all those meds back up again if i don't have to but there's a balance and you know i appreciate that there's certain things I need to do for you know for the job for myself and you know and things that I also want to keep a balance on.

Angus - Yeah so just just to be clear you getting on the train and going down to London and doing a day's work in London and then getting on the train and going back will cause your condition to worsen.

Maddy - yeah i couldn't use the tubes before I've had several instances where I've been close to just passing out where I've just been too hot i can't regulate my body temperature I've been too claustrophobic because my um spatial awareness is a real issue I've got and like i get palpitations everything it just it goes crazy I can't do it.

And then the opposite end of the scale for example heading up to Leeds which I really enjoy doing because i get to see people that i don't see very often I'm fine if i can do it in a car I get travel sickness but I've got meds I can take for that and it's if I have to do it on a train it's such a long journey and the the train that goes from Milton Keynes to get you up to uh Manchester where you have to change over is one of those pendolinos and it just makes me so sick where I've got the nausea anyway from my medication that balanced with the the motion of the train it just makes me poorly.

So I spent the first few hours just trying to recompose myself so the way my coping mechanism for that before was to travel up in the evening or the afternoon before the day i needed to actually be there to do work and stop over the night before so that i would wake up fresh and have a full day of feeling okay and to do the work.

Fi - It's the using of the spoons isn't it?

Maddy - yeah exactly

Ste: I knew someone would bring the spoons up because I love that one. You only have so many spoons to spend in a day, in your tank sort of thing, and if you have to do this you have to spend a couple of extra spoons. So then that takes away the energy you'd have for the evening and that sort of thing. It’s just like using the fuel in different places.

Angus: Just to add one tiny detail into Steve's explanation — if you live with chronic pain, say you wake up with fewer spoons or energy than if you were to live without chronic pain. It is an excellent analogy used throughout disabled communities and it’s well worth a Google if you want to learn more.

Ste: That transfer in Manchester is horrible as well because you have to get from one train to another in like four minutes and it’s terrifying.

Maddy: Three and a half minutes, and then they change the platform when there’s one minute to go! You have to go to the other side of the station — especially when I can’t run. It’s just something I can’t do; I can’t move very quickly. My friends affectionately call it my Quasimodo walk — you know, the film where he shuffles along — which they mean in good spirits, but yeah, if I need to move quickly I have to move like that, and I don’t like doing that in the middle of a train station.

Luckily though, in terms of working, I was in the office full time prior to this. Because I lived on my own, it was kind of boring, and I almost didn’t trust myself to work at home because all my stuff’s here — but I was pleasantly surprised that it actually had no effect whatsoever. I was able to just shut off.

I’m definitely going to keep doing it at least half the week, especially in winter — it affects my pain a lot. It’s weird, because they say that inside your body the temperature stays the same, so it shouldn’t make a difference, but it does. Standing in the cold waiting for the bus makes a big difference. So being able to work from home more in the winter now — I’ll definitely still go into the office because I miss seeing people and having conversations that aren’t recorded, but at the same time I’ll take advantage of working from home.

Fi: I kind of want to say working from home, if I’m completely honest with you. I think the last year has taken away the excuse a lot of companies used for not hiring people or not being accessible — not letting people who needed to work from home actually do so.

I’ve got quite a lot of friends who have chronic illnesses and they were under so much stress and pressure, just worrying about calling in sick or not being allowed to work from home. But then in the last year, because we’ve had this new kind of way of living and working, it’s made things accessible — it’s made so many more people able to do jobs they’re completely capable of doing.

It infuriates me that it took until it was only impacting able-bodied people for this to become normalised, because it should have been before. LifeSearch definitely had it normalised — I was working from home the week before lockdown because I was in the middle of a flare.

But now, coming back in, I work so much better on my own because I like my own company. I think that ‘witch in the middle of the woods’ storyline becomes ever more appealing as I get older! But also, I’ve got anxiety, so sometimes going into an office full of people I don’t know well is exhausting — I’m just “on” all the time.

I burn out more, and when I burn out more, I get more tired, which triggers my chronic fatigue, which triggers my chronic pain. When I get run down, I’m more open to picking things up — I was sick so often. Now I’ve had the last year of just not getting sick and it’s been beautiful. I’ve been given a quality of life back — loads of energy — just having that extra two hours in bed, oh my god.

Ste: I find it, especially like you’re saying with the conversation thing — learning it was Asperger’s was good because, not everyday conversation, but quite often I’m thinking “what would someone say now?” not “what am I thinking?”.

It’s absolutely exhausting to try and second-guess what you’re about to say all the time just in case it’s taken the wrong way. So just like you say, being able to choose when I have a conversation or when I interact has been great. I’m still going to push myself to go to the office and have those conversations, because you’ve got to push yourself out of your comfort zone a bit, but it’s nice to have the fallback. It’s good to know I can just get on with my work, finish the day, and sit on the sofa or whatever else.

One of the positives of working from home is that I’ve had days where I’ve literally had to have a nap — which you wouldn’t be able to do in the office — but I can use my whole lunch break to sleep, come back, and it’s like a new day. It might sound unprofessional, but it’s not — it’s on your lunch break, and you come back giving the same 110% effort.

Maddy: It’s an efficient use of your own time — a great way of using what you’ve got available.

Fi: Sometimes I’ll have a shower to reset myself because I get so tired — it’s one of those little things, it’s when fork theory meets spoon theory!

Maddy: I’ve done that a lot, just to refresh myself — wipe away that horrible feeling and start again. Sometimes it’s really good in the middle of the day just to have a freshen and get going again.

Ste: Yeah completely — I find you take more of a break at lunch when you’re at home. You might sit and watch something on TV or actually switch off, whereas in the office you never really do — you’re always thinking “I’ve got to go back.” It’s just different when you’re at home.

Angus: Okay, so coming to an end now — moving forward, for everyone listening, what’s the single thing you’d like them to remember?

Ste: I’d say be aware of it, but don’t pity it. What we were saying before — you don’t have to ask them how they are every day, but if they want to tell you something, listen. It’s not that you’re down a level from everyone else — it’s just that you’re on a different set of stairs.

Maddy: For me, it’s continuing that “be kind” message. Everyone is just as important, valuable, and equal as each other — so remember that. When you see someone struggling, help them. Treat people as you’d want to be treated, and look out for each other. I don’t think that’s just disability-related — it’s life-related.

Fi: Following on from the year we’ve had, a big one for me is: don’t be afraid to educate yourself. Just because it doesn’t happen to you doesn’t mean it doesn’t happen. By educating yourself, you can treat people the way they should be treated — not pity them. Don’t be like my second-class substitute teacher who treated me differently that one day I came in late because I had speech therapy. We’re all exactly the same in that nobody is exactly the same.

Angus: And that seems like a very good place to end it. Thanks so much to Ste, Fi, and Maddy. If you have any questions or didn’t understand something, they’re only an email away and happy to take your questions.