Faatimah

Age at interview: 20

Brief Outline:

Faatimah is a university student. She describes her ethnicity as black. 
 
Faatimah caught Covid in March 2020 but didn’t have what were then seen as typical Covid symptoms. Initially she thought her fatigue, difficulty falling asleep, changes to her periods, and gastrointestinal issues could be because of the challenges of lockdown. After having a test for antibodies, she learned she’d had Covid. She is completing her studies and seeking work that will fit around her ongoing symptoms. Faatimah was interviewed in June 2022.

 

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Faatimah caught Covid in March 2020 when she was in her first year at university. She didn’t have ‘typical’ Covid symptoms – no cough or cold symptoms. She didn’t think too much of it to start with because she didn’t know it was Covid. She felt very fatigued and demotivated and spent a lot of time in bed. She thought some of how she felt was because of the strangeness of lockdown. She just didn’t feel well.

Her fatigue, difficulty sleeping, and gastrointestinal issues continued and when she was back at university in 2021 she had brain fog and extreme tiredness after using cognitive or physical energy. Sometimes sitting up would make her feel unwell and she needed to turn off bright lights and noises and lie down to recover. 
 
She had a lot of tests, and then was offered a test for Covid antibodies. She was surprised when she found out that she had had Covid. Her doctors suggested she now had Long Covid because of her symptoms and the positive antibody test. It was a relief to have a diagnosis that explained how she was feeling.
 
Faaitmah informed the university about her diagnosis but found that the university couldn’t fully accommodate her needs. She returned to university, with some adjustments in place, such as rest breaks in her exams, but these weren’t adequate. She missed in-person classes because it took too much energy to prepare and travel to the university. 
 
Faatimah takes longer to finish her work which is frustrating for her because she is motivated to do well, but her abilities now are different to before she had Covid. It is emotionally taxing too because some things feel like they will never end. When she pushed herself in the lead up to her exams, she had a relapse and had to defer her exams. 
 
She thinks it would be better if universities offered a spread of exams, or were able to offer part-time options, instead of making people choose between their health and a degree. She is looking for part-time work but is limited by not yet graduating and her ongoing symptoms.
 
Faatimah spends a lot of time in bed – up to 20 hours a day - sleeping, resting or doing things from there. She is surprised by how difficult it is to do things she used to do, even daily activities like shopping, cooking, personal hygiene, or exercise. Her friends have helped her. She finds a routine helpful although it doesn’t always go to plan. It is not possible to be spontaneous. 
 
She has to plan how to use her energy every day. She tries to balance using too much energy by doing things she wants to do (like talking to friends), which then makes her feel unwell. She feels that she needs to still keep trying to live her life to some degree. 
 
Her experience has been hard to talk about because it can be difficult to explain. Her friends are starting to understand through seeing her experiences and she thinks there is more awareness about Long Covid compared to when she was first affected. She finds it useful to explain her experiences as chronic fatigue caused by Covid, because the variation in Long Covid symptoms means people can have different ideas about what it is. 
 
She finds it hard when people say she looks better because that’s not how she feels. Although she is managing better and there are times when she has fewer demands, Faatimah doesn’t feel anything has changed or that she is recovering. 
 
She is frustrated not to have the same cognitive capacity that she had before. She would always have been motivated to do well before she had the challenges of her illness. Her capacity now to revise for exams is so limited. 
 
She doesn’t want to catch Covid again, although she thinks she has still had Covid at least once more. She doesn’t trust the lateral flow tests. She is perhaps less worried about getting Covid again than some other people because she already has Long Covid. 
 
Faatimah does her own research about her illness and how to manage it, using NHS websites and social media. She identified that her symptoms were like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and finds resources around ME/CFS really helpful. She finds social media useful for identifying resources and to hear about others with similar experience. Her doctor has been good and believed her. She was referred to a Long Covid clinic but had difficulties making contact and hasn’t started any treatment. Faatimah learned about pacing activities and managing symptoms through research and her GP, so isn’t sure whether the clinic would be useful. 
 
She has had great practical support from friends and her family, and this and their understanding have been a ‘lifeline’ for her. Faatimah takes vitamin D, cod liver oil, and evening primrose oil but doesn’t know if they help. The last two are to help with symptoms around her period. 
 
Faatimah encourages people living with Long Covid to be confident in their experiences and symptoms when talking to others, including medical professionals, and to believe in and advocate for themselves. She suggests looking up resources from people who have similar symptoms and keeping a diary of your symptoms. She found the ‘stop, rest, pace’ advice useful for managing fatigue. She would advise health professionals to be open-minded, aware of the power they have, and to make sure they are informed about Long Covid. For young people, Long Covid can precipitate a big change to their expectations for life. She thinks it is important not compare yourself to other people, or a version of yourself that doesn’t exist, and to take joy in the life that you have. 
 

 

Faatimah felt that pacing was easier said than done because “life doesn’t always listen” to the “perfect plan” that you try to create.

Obviously – like I said – life…although you can create this perfect plan, life doesn’t listen to that and has its own stuff. So, you know, one time you go home for one weekend and, you know, you have a family gathering and I just want to sit there; I’m going to have to use up energy and I want to socialise and so, you know, you end up using up too much energy and then the next day you can’t do what you want. Or a friend will call you and you’re depressed and of course you still want to talk to a friend, so you talk to a friend and now you’ve accidentally been on the phone for two hours and you’ve messed…you’ve used up so much energy and you can’t do the reading that you wanted to do. Or one day you feel like cooking something because you feel like eating something nice and different, and you end up using too much energy, you know? 
 
Things…life is just not so linear, so, as much as I tried to maintain routine and stuff, sometimes obviously, it wasn’t successful. But I have no regrets because I also just think, you know, there’s no point obviously just living life just doing the mundane life, just doing the same thing every day and just sacrificing every bit of joy just so that you can have energy. Even if my essay was a bit less…lower grade than it could have been, my life has also still got to continue and go on. I’m not just going to become, you know, just this machine just because I don’t want to waste energy. I think I’ll go crazy.

 

The Long Covid clinic called Faatimah when she was asleep and didn’t leave a number to call back. She hoped to rearrange an appointment but doubted the clinic would be able to tell her anything new about managing her fatigue.

Would it be possible for you to tell me a wee bit more about…you said you’ve been referred to a Long Covid clinic but that that’s not really come to anything…?
 
It’s not been a successful one because of us not really getting into contact successfully [laughs]. I think like last year…I forgot what exactly happened…I got referred…first of all, the waiting time is, like, three months. Obviously by the time the…coming to call me, my mind is just off it. Something will happen, like my phone is not with me and it’s a telephone appointment or they’ll call me at like 11am or 1…and for me, that’s, like, struggle time to wake up, and so I like miss their call, and also you can’t call them back because there’s a hidden number. And I think the clinic closes at, like, four, and that’s basically the time I become most…I start my day and, yeah, so I basically didn’t get effective communication and also I had to leave to go back to [city] and then had to reschedule a whole new appointment and so, yeah, now I’m just leaving, so I’m hoping to get referred to a new clinic in [city]. I’m also not that…I mean, sure, I do want to get referred to the clinic but I also don’t a hundred per cent…I’m not that bothered about it, because I also know that the clinic are not really going to do anything [laughs]. They help you to pace yourself and learn how to manage your symptoms, but I’ve just been forced to do that myself anyway so…
 
And I’m interested to know where you get that…do you know other people that have gone to Long Covid clinics, or what’s given that impression?
 
Yes, my teacher said that. I mean, my teacher? Sorry, doctor said that. You know, it’s more focusing on that, and because I obviously…I watched, like, a couple of videos, I think, like there’s just, like, NHS promo videos or something, specific trusts have videos up or something and it’s because mainly my symptoms are not the type that can really do anything except apparently they come up with a plan thing, you get, like, different people, like you get occupational psychologists or this, a doctor and they can all come together and help create a plan for you and stuff, which I see the value in but at the same time, I could probably just do that myself, because I have been forced to do it, you know [laughs]? And I guess just seeing some people’s path before Long Covid, just seeing other ME/CFS experiences with clinics is just, like, I’m not really that optimistic.
 
So, it’s not something that you’re actively sort of chasing up?
 
No, I mean, when I go to [city], at some point I’ll switch doctors and then I’ll get there, but there’s no miracle cure to it, so they just provide professional guidance – which of course is valuable but there’s just nothing they can tell me, like, I know the NHS advice and the leaflets about Long Covid are just ‘stop, rest, pace,’ and I’ve done that [laughs].

 

Faatimah found that people have heard of Long Covid but they still get confused. Their ideas about Long Covid are not “what it is for me.”

One of the things we are interested in is the level of understanding of Long Covid out there. So, when you say that to people, you sort of feel that there’s not much understanding?
 
Now more, there’s more nowadays, if you say ‘I have Long Covid’ people kind of know what you’re talking about because it’s been two years, you know, people have seen the odd article or the odd, you know, thing. So, I think generally people have heard about it – like I said it to my friend the other day, like “Long Covid,” she was, like, “Oh, yeah, I’ve heard about that.” But I do think people have a specific idea of what Long Covid is as in ‘extended Covid symptoms.’ As in, and then maybe thinking you have long-time, long-term heart and lung problems or something like that or you know, but realising that Long Covid is actually, like, a syndrome, like an umbrella term for, you know, lots of different symptoms that people can have. People have so many different symptom profiles. And so, I think that’s where people still get confused, even if I say ‘Long Covid.’ I think – actually, no – if I said ‘Long Covid’ nowadays people would know what I’m talking about, but I don’t think they would imagine what I’m going through. They have a specific idea of what Long Covid is and that’s not what it is for me. And ME/CFS symptom profile is exactly what matches mine, which is why I want to lean towards saying that. But sometimes people also don’t know what that is either. And like the other medical debate stuff: chronic fatigue syndrome – sometimes the name to people doesn’t really explain it enough to people and so that’s why I think saying sometimes ‘Long Covid’ is better because…people are more like…really I feel people have more respect for a name like ‘Long Covid’ because it’s like, ‘Okay, Covid caused this to you.’ But if you just say, ‘Oh, yeah, I have chronic fatigue,’ they’re just like: ‘…okay.’ Or at least this is what I assume. I haven’t really spoken to much new people about it.

 

Faatimah’s most positive experience was with a doctor who listened and was “really open … just trying to help me go through the journey, trying to figure out what was wrong”.

What about any advice to health professionals, people working in the health services that come across people like you, what’s your advice to them?
 
I think it would be the same. Basically, a lot of what I just said; like you are the professional, but they are also the professional in their situation…in their situation and their circumstances, so just that openness and listening. I felt as if my…the doctor that I had…the most positive experience with just was really open and didn’t make it feel as if they were, like, you know, trying to prove something to me or something like that, or determine my future or my situation – just trying to, you know, help me go through the journey of trying to figure out what was wrong. And so, I just think that open-mindedness and open relationship where, like, you feel…the patient feels…because – remember – it’s like an imbalanced relationship and the patient is already going to feel uncomfortable and as if, like, you have more power over them and you have more jurisdiction.
 
But I think that just making them feel more like as if their voice matters – I think that’s really important, because…you know, it’s really easy to not even believe yourself. And so, yeah, just that open-mindedness… And also, just the fact that some doctors don’t even know what Long Covid is. I think that says enough for itself, I think, just increasing that awareness and stuff.

 

Working out what triggered her symptoms was difficult for Faatimah because what she could do varied from day to day.

It’s actually really hard to tell, actually. I don’t think I have specific triggers because some days, like, one activity can literally just make you want to lay in bed for the whole day, and another day you can do the activity and another thing [laughs]. And so, I will just never risk it most times, because sometimes even going to the corner shop and coming back would just make me just not be…not feel capable of doing anything else…and so I don’t think it has specific triggers, but it just depends. I think it’s really tricky. It's usually a combination of things. It depends…on your…how you were feeling before, the day that it happened, the week that you had, so your energy threshold and then type of activity, and then also a really big one: your mood. Like as much as people…and obviously I…I’m not saying that it’s in your head but there’s the fact that your mind or your psychological mood or state interacts with, like, your health and could really, like, really impact how tired you feel.