EDI Chronicles at Brain Sciences- EP 3: Becoming Disabled Later in Life

Beverley Isibor  0:09 

Beverley, hello and welcome to the EDI Chronicles at brain sciences podcast. I'm your host. Beverley sibor, the equality, diversity and inclusion coordinator at the Faculty of brain sciences. In this podcast, we sit down with an expert to learn about all the wonderful and impactful things happening in brain sciences, as well as higher education, more widely, in the equality, diversity and inclusion space, or you can say it as EDI space, so whether it's learning, working or researching. This podcast is dedicated for academics, professional staff, researchers and any curious people willing to learn about embedding EDI in their practice.

Today, we're talking about the impact of long COVID in a learning and working environment, a condition that affects 3.3% of the UK population, with 71% of those people having had it for more than one year. So joining me today is Rakesh vajani, a senior research fellow at the UK dementia Research Institute who has been living with long COVID Since March 2020. Rakesh is also a member of the disability Equity Committee at the Faculty of brain sciences, where I've heard him passionately advocate for raising awareness about the impact of long COVID at UCL, his personal experience offers a unique insight into what it's like to navigate life with this condition. So welcome, Rakesh. Hi. How are you doing today?

Rikesh Rajani  1:44 

I'm okay today. Thanks.

Beverley Isibor  1:45 

So just a disclaimer, Rakesh has a mask on in the studio, so if you hear a bit of high and lows, that's the reason, but you should be able to hear Rakesh. Wrote Kelly, so we're gonna get straight into it. What would you consider as long COVID If you were to put in your own words? So

Rikesh Rajani  2:04 

there are a few different definitions, but the most common one is any ongoing symptoms that keep happening 12 weeks after a COVID infection. And these can be either continuation of symptoms that you had at the acute stage of the disease or completely new symptoms. Okay,

Beverley Isibor  2:19 

that makes sense. So, for example, people that contacted COVID, including myself, but I had no symptoms, actually. But people who had symptoms if, for example, they had a persistent cough during COVID, and they had it 12 weeks after COVID, that will be considered as long COVID. That's right, okay. So there were obviously various symptoms, including brain fog and fatigue. Those are symptoms that I'm guessing people will suffer from COVID. So

Rikesh Rajani  2:50 

there's quite a wide range of symptoms with long COVID, and different people have different clusters of these, but the most common are persistent shortness of breath,

fatigue and brain fog. And I think some of the problems with understanding long COVID Is that a lot of these terms are quite vague in a definition. So I mean, people hear fatigue and confuse that with tiredness or sleeplessness. But actually, I've said that myself, yeah, I don't know the way I think of it, as if you've ever had a migraine, the difference between fatigue and tiredness is like the difference between a migraine and a migraine and a headache. It's something, it's almost a bone deep weariness that can kind of make it hard to sometimes move your limbs at its most extreme. So the some of the people at the most extreme, and with long COVID, just struggle to get out of bed.

And the same. I think with brain fog, we don't it's just kind of a vague term, but brain fog can range from a difficulty concentrating right the way through to what we as neuroscientists would classify as mild cognitive impairment. Yes,

Beverley Isibor  3:52 

okay, that makes sense, so I'm guessing these symptoms obviously have an impact on daily life, so it would be considered as a disability?

Rikesh Rajani  4:02 

Yes, so because certainly for anyone who's had them for more than a year, it automatically counts as a disability for someone who's not had it for a year. Yet there's some debate about whether you can be expected to necessarily have it to last a year or more, and therefore whether it would be considered a disability under the Equality Act. Okay, so, I mean, I think the fact that you know, 70% of the people currently suffering with long COVID in the UK have had it for more than a year, means I think you can reasonably expect to treat as something that will last a year or more, and therefore it should be covered under the Equality Act.

Beverley Isibor  4:37 

Okay, that's good. So I want to actually highlight your kind of if you, if you're comfortable in stating like your symptoms of persistent COVID, so long COVID,

Rikesh Rajani  4:50 

so I have fatigue, brain fog I did at the in the kind of earlier stage of my long COVID. Have very bad brain fog and short. Of breath, but those over the first year got better. They're not back to normal, but they're better than they were, and

Beverley Isibor  5:07 

since March 2020, yeah. Oh, wow.

Rikesh Rajani  5:09 

So, so, I mean, the biggest thing that's very common is what's known as post exertional malaise, sometimes also called post exertional symptom exacerbation. So this means that anytime you do any physical, mental or emotional activity afterwards, your symptoms get much worse. So people who suffer from non COVID and other conditions like me would describe that as a crash. Sometimes, sometimes you'll hear people talking about spoons, which is their way of quantifying the energy limits they have. So part of managing the condition is keeping within your own personal energy limits, because if you go above that, you will crash, and then for a kind of hours or days, depending on your the person and the extent of that, all your symptoms will be much worse.

Beverley Isibor  6:01 

Okay, so when did you actually realize, I know we give a time period to long COVID, which is 12 weeks, right? And then after a year, you said a year. Up until that point, when did you actually realize that, oh, I have long COVID? What was one of the things that made you go and seek help for it.

Rikesh Rajani  6:23 

So it was quite difficult, because early on in the pandemic, it wasn't defined, and most doctors, I mean, even now, many doctors don't fully recognize and understand that, but certainly at the time, many were dismissive of it. So for me, the earlier symptom was persistent shortness of breath. So for a couple of months after my COVID infection, I just had real problems breathing. And at the time, because not more, not much was known about COVID, this was thought to be kind of a just a persistent part of that. And actually there are some things which, in retrospect, I can see were actually also early symptoms, but because at that same time, transitioned to working from home and not being able to leave the house much with lockdowns. So actually there was fatigue and brain fog right, quite early on, probably a month out from that. But I just don't think I necessarily noticed it when working from home and not doing physical activity, you don't necessarily

Beverley Isibor  7:23 

notice that. Yeah. Okay, that's interesting. So at what point did you go to the doctors, or did you read up about it first?

Rikesh Rajani  7:31 

Yeah, so, so, you know, with the breathlessness every kind of month after my initial infection, I was kind of contacting the GP, and eventually, after three or four months, they were like, Okay, maybe we'll send you for investigations. But most of what I learned was reading up online on other people suffering with the condition, and that's certainly for the first couple of years, was far more informative than anything even the long COVID clinics at the hospital,

Beverley Isibor  8:00 

because they were also new to the condition themselves. So at UCL, you are a senior research fellow at the dementia Research Institute. So in that case, how has it had an impact on your work life at UCL?

Rikesh Rajani  8:14 

So I think there are the two. The two biggest factors that impact me are the this post exertion malaise I mentioned, and also the clinical vulnerability that comes with the disease. So the Rees the actual research on this still isn't very strong, but everyone with long COVID knows from experience that if you get another COVID infection, it makes your long COVID Much worse, okay, and depending on the person and the situation. Sometimes that can be for a couple of months, it's significantly worse. Sometimes just permanently, it's much worse. And when you're kind of, you've already had to compromise your lifestyle in so many ways, you don't want to take that risk at all. So that means that, you know, as you said at the beginning, I'm wearing a mask right now, and anytime I'm indoors with people, I will be wearing a mask, yeah. So that means, you know, I can't if I want to go to a restaurant or a pub. I can only be in good weather so I can sit outside. It means that at work, I need an isolated office space, at the very least, for me to be able to have lunch or have a drink of water, even. So that's Yeah, and that can be quite limiting, because not every department has space to provide you with that. I was gonna

Beverley Isibor  9:28 

say sometimes we're always fighting for space at UCL,

Rikesh Rajani  9:33 

yeah. And the other side of it is the post exertional malaise, so it basically involves a lot of planning. So I'm, you know, I'm a lab based researcher, and I know that if I've got a couple of busy days in the lab, I need to plan that the weekend before that and doing nothing and resting the day after that. I'm working from home, because then I avoid the extra exertion of. To commute and being at home, I can take longer rest breaks during the day. Yeah, kind of because in order for me to keep working full time, it means having to cut out everything else. So no, obviously, no physical exercise at all. But even socializing is bare minimum, because kind of doing anything else other than my work takes me beyond that energy envelope that I have.

Beverley Isibor  10:24 

Oh, wow. So it's actually had a very massive impact on your life then and your work life in general. How have you found it in navigating that with other people?

Rikesh Rajani  10:35 

I guess it's been difficult because, because there's so little recognition of it. So, for example, the kind of, in many ways, it was easier during the kind of semi lockdown period, because people would be doing things online anyway, and they are much more accessible to me, both in terms of the clinical vulnerability and the reduced exertion. And there are various levels of understanding that people have. So, you know, it's, I guess, in many ways, it's the same as any other invisible disability, beyond the fact that I'm wearing a mask, you wouldn't know there was anything different about me. So, for example, when I use the lift to get up one story, you can see people judging, or sometimes even actively making comments and almost as a backlash to the initial lockdowns. There are still, you know, people who will comment on you for wearing a mask. So let

Beverley Isibor  11:26 

me just button that politicization of the mask wearing. Yeah, I guess, would you consider that as an impact as well?

Rikesh Rajani  11:34 

Yes. I mean, I guess you know, within UCL, not so much, but yeah. I mean, occasionally still, but and certainly wider, wider and in life, that's that's had a big impact, because people judge you for it, and people don't necessarily want to give you the accommodations. And I think, I think some of the kind of rush to return to normality has also led to kind of, both by wide society and the government and everything to downplay the impact of long COVID, because even post vaccines, yeah, there is still that the risk is reduced, but there's still a risk that with every COVID infection you face, between a one and 5% risk of getting long COVID. Oh, wow. And obviously, if you if everyone realized, I think the full impact of long COVID And that chance is still there, people would be maybe, maybe people wouldn't, but I think if people truly understood what it was like, they would be a lot more cautious about returning to normal, and obviously that would have downstream impact on the economy and things like that. So I think there's been a wider desire to downplay the effects, and that then kind of impacts society, like people's wider understanding, but also the provision of services, research and things like

Beverley Isibor  12:50 

that. Yeah, I agree. And I guess it is that, including when COVID happened, you can look at it in a way of the government and like organizations and institutions had to balance the majority versus the minority in a lot of decisions that were made, and that is unfortunate. I understand it from the business point of view, and, you know, returning to normal, but at the same time, it does give some form of isolation to those who do suffer from long COVID. Even though it is recorded that 1.8% of the UK population suffer from COVID, I can imagine that there are a few more people. Yeah,

Rikesh Rajani  13:30 

I think, I think, you know, understand me, there is that desire, you know, there's a traumatic period in many people's lives, and there's obviously that desire to move past that and kind of imagine that we're beyond that, and we don't have to worry about it anymore. But that, in some ways, makes the problem worse, because it means there are no mitigations, no, you know, even the data collection on how much COVID There is currently around. So you know, if I There are occasions when you have to risk being indoors without a mask, whether that's hospital appointments or dentists or whatever, and if I'm trying to kind of, you know, take personal responsibility as the as the phrase is, it helps me to know what the current level of COVID cases are, but a lot of that data has been is a lot less stringent than it was being collected before. So like, it's hard to even kind of try and make my best decisions, because it's largely not being considered.

Beverley Isibor  14:27 

I think when we speak about disability in general, we speak about the how society can help those with disability, as opposed to the individuals themselves feeling like they have to take on the work. Do you think that at your work, for example, they have done enough, or at UCL, more widely, they've done enough for people like you?

Rikesh Rajani  14:55 

I think me, personally, I've been lucky, and I think for me, I. Managed to get all the accommodations I need, yeah, but it has, I guess, you know, coming to being disabled later in life, it's kind of quite a kind of eye opening for me to to realize that that mental load that is placed on you to try and get all this so I've been very lucky that I have a very supportive line manager, and that's good helps with kind of the advocacy needed to get the accommodations from other other people in the department. But I'm not sure that that everyone would be able to get that as easily. So I think it's been very dependent on having a good relationship with an understanding line manager. But even beyond that, there is only so much my line manager can do, because they don't control deep up until funding or resources. Yes, they, if they're, for example, the provision of separate, isolated office for myself, I've been lucky that there has been one available, but it is on the understanding that if someone, you know, a more senior person is recruited to who would have an automatic right to that office, potentially that could be withdrawn, okay? And you know, because that's kind of what the general policy is, and they don't have the resources. And while UCL is, you know, much better than many other universities, and in talking about disability and equality and trying to provide these things, the resources aren't necessarily available from Central University to filter down to actually provide the accommodations needed in every case. So you can have a, you know, a very understanding line manager, a very understanding Department report from occupational health. But ultimately, if the funding and resources aren't provided centrally, that doesn't always translate into the accommodations being able to be provided. Okay?

Beverley Isibor  16:53 

So resourcing is very important when we're speaking about helping those with long COVID. And as you said, it depends on department to department or faculty to faculty. And I'm guessing, like UCL already is very restricted with space. So I can just imagine how, even though your experience has been good, there may be people who have been not as successful with such accommodations. But I guess overall, would you say the free TR HR policy around flexible working, so the 20 to 80% work from home versus like coming into the office? Would you say those policies are helpful to people like yourself, I

Rikesh Rajani  17:41 

think so because it normalizes hybrid working, yes, and that is very important, I think because you need that, that flexibility and how you so even, you know, I'm a even though, if you're a lab based researcher, you inevitably have to be in a certain amount of the time, but kind of having that normalized flexibility is that when you don't have to be in doing lab work, you can be working from home, yeah, allows you to plan your day better, plan your week better, your energy levels better.

Beverley Isibor  18:09 

That's really important, because I want to kind of go back to the importance of your line manager, as much as you've said that, you know, resourcing and you know other factors may play a role as to what lengths your line manager can support you, but if your line manager is advocating on your behalf, that is is super important for those that suffer with long COVID or any other condition that requires some form of reasonable adjustment. Would you agree?

Rikesh Rajani  18:43 

I think that's the most important thing. Is, is a line manager who advocates for you, and because a lot of the things like flexible working arrangements, is entirely within their gift to provide anyway, a lot of the time. So I think that's the most important thing,

Beverley Isibor  18:57 

and a lot of it boils down to awareness as well. There may be some line managers that probably don't know how to deal with, you know, reasonable adjustments. Hopefully they do by this point, because UCL do offer reasonable adjustments training for line managers. So if you're a line manager and you don't know about it, I think the discussions such as this should kind of prompt you to go for such trainers, because it gives you an idea as to how to deal with disability from a line management perspective, okay, I'm very happy that we've discussed that, because we've covered resourcing, we've covered line management, we've covered policies that exist to support long COVID but by end of the Day, there needs to be some form of institutional advocation and kind of look between the fine lines as well, and the gaps that you know may exist for individuals that have long COVID. So this is my magic one question I ask this in every episode. If you could change one thing to help. People with long COVID, what would it be?

Rikesh Rajani  20:01 

Well, there's a few few different things if we have time, ranging from kind of the most optimistic to maybe some which are more feasible. But I guess if we could do anything, it'd be trying to find a treatment or a cure for long COVID. So right now, we don't really know what causes the condition. So I am a neuroscientist. I have my ideas, but the research isn't really there yet. So under understanding the biological mechanisms better, so that we can either cure it, or at the very least treat it, would obviously be great, but, you know, that's that's a while away. But the key there is kind of more funding for research. I guess next down on the realistic list would be clean air everywhere. So, you know, after the kind of cholera outbreak in the 1850s we realized that we need clean water everywhere to prevent the spread of diseases. I'd kind of like to see this, see that the COVID pandemic trigger something similar for respiratory diseases. So kind of putting proper air filtration and ventilation in all public buildings. So universities, schools, hospitals would just make life much not, not only would it make life much easier for people with long COVID, but also for other clinically vulnerable or immunocompromised people and and more widely, it would have other benefits to society. So for example, you would have children missing fewer days of school because of sickness. You would have employees missing fewer days of work the economic benefits that would bring. You'd have less stress on the NHS during winter. And then, I guess the most realistic end of that it would be just greater awareness and understanding of long COVID more widely, and for people to to understand the condition, realize how severe its impact can be on people, and ultimately, know how best to support people.

Beverley Isibor  21:57 

Yeah, I think there needs to be more stories, because, like, your story will be very different to someone else who has long COVID. And I think

Rikesh Rajani  22:05 

part of the problem with that is you almost, almost by definition, you never see the worst impact. Because, of course, the times when I am at my worst, because I've I'm going through a fatigue crash or something similar. People won't see me. I'll be at home, resting, right? So it's almost, it's, you know, it's a it's another form of masking. And when I'm, when I'm out in the lab or out seeing friends, I'm I have people don't see the kind of the rest and preparation that's gone into that, and the rest that's required after that to make me be able to kind of appear almost as if I wasn't suffering from this. Yeah,

Beverley Isibor  22:46 

and I guess that that goes on to someone like myself and others not to pre judge before you kind of understand, or even even if you do not know, even if the person does not disclose to you that they have long COVID. Anything could happen, and I guess that's just a grand principle that I hope everyone follows at UCL, so it'll be really good for you Rakesh to provide practical advice on people who might have long COVID Or probably don't know that they have long COVID What would be your advice to them?

Rikesh Rajani  23:23 

I mean, if you're if you've kind of got any ongoing symptoms after a COVID infection, I'd go see your GP and see if you can get referred to a long COVID clinic. So, I mean, here at UCL, we're lucky that uch is one of the biggest and best long COVID clinics in the country,

Beverley Isibor  23:39 

and we're just close by, yeah, just across the road. And

Rikesh Rajani  23:44 

I guess you know within, within the workplace, that the first place to go to is talk to your line manager. And if, if you don't necessarily have the best relationship with your line manager, I guess maybe a departmental head or an HR person within your department who might be able to help you with getting the best accommodations that can help you. I think the key is actually it's because you know, one of the one of the symptoms of this condition can be problems with cognition, and in a university, one of the things you're most employed for is the way and ability to think. Yeah, so it can, I know, be quite sometimes difficult to own up to and admit to having long COVID And to having problems with thinking. But I think, you know, if you as long as you have an understanding line manager or HR person that you can go to to kind of discuss this openly, that's the best way to actually get the accommodations you need to be able to kind of carry on working to whatever capacity you're able. Yeah,

Beverley Isibor  24:50 

that's Oh, thank you. That's really good advice. And when you mentioned the HR representative, specifically, I'm more. Aware of workplace health. Yeah.

Rikesh Rajani  25:02 

So workplace health are very supportive, yeah. But ultimately, all they do is make recommendations to your line manager, which your line manager then has to implement. So if you I mean, ultimately, sometimes, depending on your line manager, you won't even need that if they're understanding enough, often having that recommendation from Workplace Health helps for them and for you to advocate for accommodations, especially if more resources are needed. Yeah, so that that is definitely something worth doing. But I was thinking more in the case of because I think, like, as we discussed earlier, that the supportive line manager is the most important thing, I think, to getting the accommodation so that if you don't necessarily have the best relationship with your line manager, or you don't, you're not, you're concerned they won't be fully supportive. I don't know if an HR representative within your department might be a good place to start. Yeah,

Beverley Isibor  25:56 

local, yeah, yeah. Thank you Rikesh, for sharing your journey and insights with us today. For our listeners who may be experiencing long COVID, it's important to reach out for support. Probably start with your GP and contact them for medical advice. At work, I would advise you to inform your line manager, and Rakesh has also mentioned that as well inform your line manager or local HR representative, and don't hesitate to seek advice or information from Workplace Health at UCL. Additionally, if you're suffering from long COVID And would lack further support in terms of just someone who's experienced it firsthand, Rakesh has kindly offered to be contacted, and you can contact Rakesh through fbs.edi@ucl.ac.uk, we hope this episode has provided some valuable information and a reminder that you're not alone on this journey. Thank you for joining the EDI Chronicles at brain sciences podcast. I'm your host, Beverley, Sibel, and I hope you join us next time bye.