Xanthe

Age at interview: 26

Brief Outline:

When Xanthe had Covid in early 2021, it felt like very bad flu. For the first three months after her Covid infection, Xanthe had fatigue, burning pain in her legs, persistent headache, dizziness, weight loss, and brain fog. She had a few months in the summer where she felt much better and applied for a new job which she began in October, but her post-exertional malaise worsened and she was spending the whole weekend in bed. By January she reduced her hours to one day a week but thinks she might need to consider remote working. She now needs support from her family for day-to-day living and uses an electric car to get around. She has been attending the Long Covid clinic which has been very positive, but she wishes it had more joined up, holistic care and saw people more frequently. Xanthe was interviewed in May 2022. Since then, she tells us she has had to completely resign from work.

Xanthe lives with her parents and works part-time as a therapist for children and young people. She has recently completed her Master’s degree. Ethnic background: Greek Cypriot.

More about me...

Xanthe tested positive for Covid in late December 2020. For ten days she felt like she had very bad flu which she was able to treat at home. Other members of her family also had Covid and recovered. After ten days, Xanthe decided to go for her usual walk in the woods which normally takes about an hour. About half an hour into her walk she suddenly felt “like I’d been hit by a bus.” She managed to get home and into bed.

In the months that followed, Xanthe had severe fatigue, muscle pain, and burning pain in her legs which she describes like “fire going up my legs.” She also had persistent headache, dizziness, continued weight loss, and brain fog. The fatigue led to her delay finishing her Master’s degree for several months. Between June and July her symptoms plateaued where she wasn’t getting any worse or any better. She feels the adrenaline of finishing her Master’s helped her along, although she still had the burning feeling in her legs.

At five months post-Covid, Xanthe developed joint pain and her wrists and ankles started to feel inflamed. She went on holiday to a Cyprus and said she “felt completely fine” apart from the occasional burning feeling in her legs. By October she was working four and a half days a week in a new job as a psychological therapist for children and young people. But at the weekends she was “crashing badly,” and she needed to spend the entire weekend in bed.

Around December, Xanthe had the third booster vaccine which coincided with a “huge decline” in her health. In January she reduced her work to one day a week as the fatigue, post-exertional malaise, and brain fog were becoming much worse. Xanthe says as time went on, “the crashes become horrendously traumatic because you go from sort of functioning, to not functioning.” She needed to ask her family for help with day-to-day living, like cooking, laundry, and hair washing. She now does a lot of the things she needs to do online, like banking and shopping.

In April she spent a month doing hyperbaric oxygen therapy as a daily outpatient which cost £4,000. She no longer has the burning pain in her legs and the muscle pain has been reduced, but the post-exertional fatigue remains and she feels disheartened “that [it] promised so much and delivered very little, and spent so much money on it.”

Xanthe has been attending the Long Covid clinic and seeing the GP, psychotherapist, and nutritionist occasionally. Her experience of the Long Covid clinic has been very positive; clinicians believe her and she has been offered lung function and 24-hour monitor heart tests. She would like to see Long Covid clinics provide a holistic approach to care provided by a multidisciplinary team.

She is waiting to see a physiotherapist and has been doing a brain training programme which focuses on understanding the relationship between the brain and the nervous system and helping it to rebalance which she thinks is helping.

Mentally, Xanthe says, “it is horrendous, living like this is absolutely horrendous.” She has had weeks recently where she cried every day. She is terrified of getting Covid again. She says, “I just have to take every minute at a time sometimes.” She tries to focus on happy memories, like the time before Covid when her whole family of six went on holiday to Canada together which she thinks about “when I’m feeling really terrible.” She’s also been seeing a private therapist because it’s really important for her to stay well mentally.

Socially, she can only manage to see people for two hours a week or less and afterwards she crashes. She has started a relationship with another person with Long Covid; they meet up at each other’s homes but on one occasion they were able to go to a classical concert together.

She thinks there is limited understanding of Long Covid amongst people. When people see her she looks well so they assume she’s recovered and they find it difficult to understand how she can be doing something one week and then not the next. She feels the attitude of “push through, be positive, be strong, you’ll get through it’ is “really harmful for someone with Long Covid” because she has pushed through for a whole year and made herself worse.

Before having Covid, Xanthe was very fit and active doing several sports including thirty- to sixty-mile cycle rides with her cycling club each weekend. She was finishing her Master’s degree in psychotherapy and planning on moving out from living with her parents when she got a job. She feels stuck right now and “sometimes completely terrified” of the future but being in her mid-twenties she tries to think “I can’t possibly be like this forever.”

Xanthe said she felt like someone had lit a fire in her feet that was travelling up her legs.

So, the months that followed that was severe fatigue, real bad tingling down my legs and like a burning pain, and that’s the only way I could describe it, like burning as if someone had lit gas in both of my feet and there was like a... a fire extinguisher... or fire going... going up my legs. I also then, from that, was getting like muscle pains in my legs as if I’d run a marathon or cycled many, many miles, which I would do before.

Xanthe remembers going on holiday and feeling like she didn’t have Long Covid anymore.

So then in July I went to Cyprus, which is where I’m from, and I’d just finished my Master’s and I was like, ‘I really need a break.’ I went to Cyprus and didn’t feel like I had Long Covid, and I felt completely fine apart from some of the occasional burning of the legs, but I was up every day going to the beach, driving to the beach, going for dinner, I still wasn’t able to drink alcohol, because that would make my symptoms worse, but I felt like, ‘ohh, finally this is starting to get better.’

Xanthe is no longer able to move out of her parents’ house as she now relies on their care.

[I didn’t move out of home] because my two degrees I did were very close to my home and they were both extortionately expensive so I didn’t. However, I had been saving the whole time and I’d just got this brilliant job, and so had I not had Covid, I would have been moved out by now, so I was going to get the job and then move out, because I had savings, I had a... a really great job, like the starting salary was phenomenal in my opinion for someone of... I mean I’m 26, I’m not super young, but I feel young. I was 25 when I first caught it, just turned 25, and I was ready to move out. I was financially ready. I was mentally ready. I was physically ready. So, I hadn’t lived away from home yet, but I was just about to.

Xanthe applied for PIP to help fund her care when her sick pay runs out.

Yeah, and you are being paid? You've got some sick pay, don’t you?

Well yeah, I’ve only been sick... off sick for a couple of weeks, so currently I’m still being paid for one day a week and thankfully, I thank my lucky stars that the salary is good... it’s sort of... so it’s good enough that only one day a week is someone’s minimum wage, you know? So I’m so grateful for that. And so currently as it stands, yeah, after that, this month I’ll be paid, but I don’t know about next month.

Yeah, and you know the tribunal process that you're going through, is that usual for that or has it...?

Yeah, most people that I’ve spoken to with the Long Covid have had to get to that stage to get... but most people I know have then won from them. But I don’t know how much they get. I think they pay up to about £600 a month, but I don’t think I would get that much because... I mean I don’t know why I wouldn't get that much because I can’t do anything [laughs]. Maybe they want to see me in wheelchair or something, I don’t know.

Do you think living at home would... like would they sort of say, ‘oh well, your parents are supporting you,’ or...?

Maybe. But that’s not how it’s tested: it’s tested on how the disability affects your life so not necessarily your... so it’s not... it’s not means-tested or anything like that so it should... it should... it really shouldn’t be that but, I mean my parents are working full-time, six days a week, full-time jobs, and trying to look after me: they shouldn't have to do that, if it means that I have someone who comes in and makes my lunch every day and I can pay them to do that, then it takes more pressure off. You know, things like that, so...

Xanthe’s just got into a relationship with another person with Long Covid. She says she feels she has “nothing to give and yet someone loves me for who I am

And in the sort of illness period itself, I have still had some nice days. I actually have got into a relationship recently with someone who also has Long Covid, and that was so unexpected, and just hilarious because I have nothing to give and yet someone loves me for who I am, so that’s been really nice. But I’m not going to romanticise the experience in any way because I’m just telling you the ways I cope. It is horrendous; living like this is absolutely horrendous. I don’t think I could be with someone who maybe didn’t have this experience or a similar one because it’s so unique and unless... I mean you sound like strangely unique in a sense that you just seem very empathetic and understanding, but most people don’t want to understand, so instead of just holding space for you they try and tell you what you should be doing, or tell you to be positive or something like that, and so you know dating was completely off the radar for me, like it wasn’t even in my... I didn’t have space in my mind to think, ‘oh, what about dating?’ You can’t even like make food for yourself, so... so yeah, very, very unexpected but very lovely.

The illness has peaks and troughs: there are moments where you... you're sort of doing OK, and then there are moments where you're doing absolutely awful, and we both go through those, and we’re not the same person, so we go through them at different times. So there are times where we can’t even speak to each other but we’ll just send each other like an x on WhatsApp just to know that we’re still there, and I haven't seen him in two weeks because... because we’ve both had really bad dips since the treatment, and we... we both had to be very flexible with each other in terms of... you know, we might plan to see each other and then it comes down to it and the other person is not well, so it’s... it’s the weirdest relationship but actually it works quite nicely, yeah.

Xanthe was sometimes “completely terrified” when she thought about the future. She talked about how Long Covid affected young and older people in different ways.

Sometimes completely terrified. I don’t know where I’ll be health-wise, financially, career-wise. Most of the time I feel terrified, and at the same time I think I am 26 and I’m lucky I’ve been able to get my qualification, so I’m not sort of a child suffering trying to even get through school, so I’ve got that. I’m sort of stuck, and I think actually maybe being stuck is OK because I’ve got a huge amount of qualifications behind me, experience behind me, skills, and that I have so many years ahead of me, I can’t possibly be like this forever, but that’s...and that’s what I try to remember. At the same time I’ve met many middle-aged people with Long Covid, I would never minimise anyone’s experience, but the people I’ve spoken to, I don’t know if I’m making an assumption, but the middle-aged people with Covid have seemed to be managing much better? because...I mean I can’t imagine having to take care of kids, that must be awful, but you know you've had your career and I know that you know you think that there’s more life ahead of you, but you've had some...you know, I don’t know, so I think it really is a unique position being in mid-20s and you know you're just ready to leave the nest and you're stuck. So, I think at the same time there are so, so many years ahead of me that something’ll...hopefully I’ve had my life’s worth of bad luck [laughter].