Shaista

Age at interview: 45

Brief Outline:

Gender: Female
Ethnicity: Pakistani
Background: Shaista is in her 40s and is Pakistani. She works full time as a journalist and a city councilor. Shaista developed Covid symptoms in March, before Covid testing was available. When she did get tested, she came back negative for Covid. Shaista’s GP diagnosed her with long Covid in January, but she has been unable to attend a long Covid clinic. 

More about me...

Shaista became aware of Covid in early 2020 by following articles in the news. While travelling with her mum to perform pilgrimage in February, she remembers seeing lots of people in the airport travelling to countries which may have been “entry points” for Covid. Shaista started to feel unwell at the time, and her symptoms developed into coughing and fatigue by March 2020. Later, Shaista’s symptoms included an eye infection and a fever, which came and went every few days.
 
As testing for Covid wasn’t publically available, Shaista phoned the NHS hotline where she felt “dismissed and not listened to”. Shaista explained that people of colour have historically been failed by the medical profession but was only told “that’s the best [the hotline] can offer at the moment”. When testing became available, Shaista tested negative but still suspected that she was unwell. She says the experience “felt like gaslighting”.
 
Shaista found that her GP was “very compassionate and very caring”, and in January 2021 they diagnosed Shaista with long Covid. Despite being referred to a long Covid clinic at the time, Shaista hadn’t received a referral from the clinic by June. 
 
Shaista decided to “go public” with her diagnosis to raise awareness that “everyone’s Covid experience is unique”, and found a number of friends had received the same diagnosis. She felt that the “rhetoric from the Government was disgraceful” and may explain some of the stigma surrounding long Covid. She also points out the narrative in the media about Covid is “laced in racism and bigotry”, as the people most likely to be hurt by Covid are “blamed for spreading the disease”.
 
Shaista found that her physical and mental health were both affected when ten people she were connected to passed away due to Covid over the course of three days. Shaista feels that her mental health is now something she’s “really aware of more than any other time” and her “life has changed a lot”. She plans to “take each day as it comes” and thinks that addressing structural racism as well as building trust with healthcare professionals should be prioritised as part of recovering from the pandemic.

 

Shaista got information from news and personal connections. She has also learnt a lot through listening to people talk about their experiences.

So I read a lot, I read lots of different publications but I have to say that overwhelmingly, what’s enabled me to understand how horrific this pandemic is actually the connections I have with people who’ve lost people and in my community, I mean other than ones in my community as far as I’m concerned but, you know, people often specific from working class South Asian communities who’ve been hit very badly, lost loved ones, we’ve lost loved ones. Have a lots of friends who are doctors who are just devastated. Nurses, I have friends who are nurses. One of my friends is a senior consultant, he, he is a migrant doctor and he contacted me quite early on to say he was absolutely terrified of dying of Covid and his family being deported back to Pakistan and he was really scared of this and he was just giving me chapter and verse and what’s happening at work and then he kept telling me, “You can’t tell anyone, you can’t tell anyone.” I said, “Well I would never betray your confidence so I never tell anyone, but you can’t just keep this to yourself,” and then month by month more and more people were telling me the same stories over and over again and so the information I’ve been getting is from people I know personally who are frontline medical workers.

Shaista became ill in March 2020. She isolated in her room to help protect her mother.

I started feeling a little bit unwell when I was there, but I put this down mostly to being fatigued because of travelling and lots of long days. It’s quite gruelling to be on pilgrimage and it’s very, it’s very beautiful but very gruelling so I put it down to that, but I was starting to feel a little bit unwell. So, I came back In February and then the information about Covid was swirling. There was much more information, a bit more public awareness as well. And so that was February and then we headed into the lockdown in March I believe and so like a lot of people my working reality, my day-to-day reality changed so I was working from home. I was inside, I was abiding by all the rules that we were told to abide by, so I wasn’t going out anywhere apart from going on my daily walk. But what I noticed was from March onwards I started to cough quite a lot and I started feeling very, very tired so I was isolating in my room. I’m lucky enough to have, have a home where there’s more than one room, where there’s some space where you can isolate. My, I live with my mum. She has diabetes, she’s an asthmatic. She is a woman of a certain age as well, so I was very aware of the fact that, you know, my mum was very vulnerable, so all of these factors were very much on my mind.

So, I, at the time, there was no access to testing, there was no access to any, anything that would enable me to know if I had Covid or not. The rules were very straightforward which was stay at home, don’t, you know, wear a mask, don’t go out unless it’s absolutely necessary so I followed all those rules. So, I carried on working in part because it’s the kind of person I am, I kind of push on through but what I remember in terms of symptoms were just exhaustion was increasing. I started developing an eye infection.

Shaista wondered ‘if you don’t have a car, how do you get there?’ about travelling to test centres.

So, I applied for my Covid test on the website like most people did and I was told to go just outside [city] near [town] for my Covid test, so that’s where I had to go. I mean I would ask, like the early days of this pandemic if you don’t have a car, how do you get there? You’re not gonna get there on public transport because you’re not supposed to be on public transport. If you feel, if you think you’ve got Covid you shouldn’t be near anyone should you? So, the entire set up is just absurd.

Shaista recognised that some people didn’t want to test because they couldn’t afford to take time off work.

We’re seeing you know, we’re seeing key workers and others all scared to take Covid tests because it means they’ll be out of work for ten days. They can’t afford it. I have a friend who is a keyworker who works actually in Emergency Services, and he said to me that amongst his colleagues nobody wants to take, nobody wants to use Track and Trace, nobody wants to take a Covid test because it means they can’t work for ten days. They’d rather just risk you know, the potential that they’re carrying Covid so they can carry on providing food for their families. I mean what a shocking state of affairs but this is, this is what’s going on because unless you have a system, a welfare system that works for everyone, unless you have a proper system in place that will make sure that everybody gets sick pay, everybody regardless of what they do can, you know, pay their rent, pay their mortgage and everything during a pandemic, you know, people are gonna carry on working aren’t they?

Shaista said it was shocking that the government wanted to absolve its responsibility for the pandemic and blame people individually for their behaviour.

I also feel that it’s shocking that a government is trying to absolve responsibility for taking control of a pandemic and busy telling people that actually your behaviours are on you. If you want to do something, you should do something. If you don’t want to do something, don’t do it. Beyond wearing a mask and washing your hands and social distancing which nobody understands what social distancing means. This is the concept that makes no sense to anyone. These were the three key messages that kept being pumped out but then there were things like, “well if you want to go somewhere, you can go somewhere but if you don’t want to go somewhere, don’t go somewhere." Just absolutely ridiculous and very dangerous and the whole ethos of that messaging is to blame people individually for a pandemic rather than taking responsibility for a well-messaged clearly defined public health strategy that is going to save lives. It’s just damning, and I feel that for those people who are sceptical of the medical profession anyway or who are scared quite frankly you know, they that’s very confusing and very damaging.

Shaista liked to use a mix of ‘conventional’ medicine and herbal remedies.

You can’t, you can’t wish away illnesses away through vitamins and things like that. You just can’t, I don’t believe you can but at the time I believe that we have to have more holistic approach to medicine so I’m someone who’s always gone down the route of taking conventional medicine, also looking at other options as well, so, for example, acupuncture you know, some herbal medication. Supplementary things you can take to boost, you know, your immune system and things like that but that won’t, I don’t believe won’t make up for anything if you’re not also looking at conventional medicine as well and I believe in that very strongly.

Shaista experienced different effects from her first and second doses of vaccine on her Long Covid symptoms.

There’s been a lot of information out there about the vaccine and how those with long Covid do feel some of their symptoms alleviate and get better after the vaccination and I felt that as well. The first one in particular, I did feel that I was bumped up the queue because of my long Covid diagnosis so I’ve got the vaccine far quicker than I should have done which I’m pleased about because I was suffering, so I did feel less exhaustion. The second time, the second vaccination, I was completely wiped out. I was quite surprised by how much it really knocked me out but again I was told that’s not unusual for those who don’t have side effects from the first vaccination sometimes they have more the second and vice versa. But I also think with Covid and with the vaccination, I think you can go down a rabbit hole in terms of researching and finding out what things happen, what happen and what don’t happen.

Shaista described how images connected particular groups with disease spread.

The narrative, the dominant narrative around Covid is laced in racism and bigotry. I defy anyone to tell me otherwise, the evidence is all there. As a journalist, I’m someone that analyses a lot of information and there has been many a time in the past fifteen months when I’ve watched news, when I’ve picked up a newspaper and when there is a particular focus on very racial diversity, like Leicester for example, or Birmingham for example. Frequently what we see is images of a mosque, a masjid in the background and women from a South Asian background. You can identify them from their clothing, a traditional shalwar kameez of a certain age walking along the street and these are the images that are pasted over the voice over of a journalist and the same goes for newspapers. They use this image over and over again. There was also some images on the BBC website of women in hijabs and then references to Covid and they were taken to task by a media pressure group about that. So, these images and this terminology and the connection between Covid is not happening accidently.