Claire

Age at interview: 49

Brief Outline:

Claire and her sons caught Covid in March 2020. Her oldest son had alarmingly purple/blackening toes for many months but thankfully felt fine, while Claire was badly affected after five days, and both the twins were unwell. Claire and her twins have all continued to have different and varied Long Covid symptoms in remitting and repeating waves for over a year. Claire is the most affected and was bedridden and unable to work for months. She still has cognitive and physical symptoms, now works part-time and can only walk short distances. She uses a wheelchair to aid her mobility. Claire is very active in the Long Covid community after setting up a Facebook-based patient support group (now part of the charity Long Covid Support) and is part of the NHS England Task Force for Long Covid. Claire was interviewed in December 2021.

Claire works part time in consultancy. Claire lives with her three sons – twins aged 12 years and a 17-year-old.

More about me...

Claire caught Covid in March 2020. For the first five days, she just had a mild sore throat so continued working from home, but kept her sons off school as a precaution. On Mother’s Day, the day before the first UK lockdown, she woke up with what felt like a heavy weight on her chest and felt worse and worse throughout the day: “I felt like I’d been run over… it didn’t feel like anything I’d ever had.” Claire summoned the energy to email colleagues to hand over her workload. She says the following few weeks and months were a blur- Claire went to A & E for the first time the following Friday. Her sons, 11-year-old twins and a 15-year-old, had to fend for themselves at that time, as her ex-partner was shielding his vulnerable mother who lived with him. A & E said her oxygen levels were fine even though she was gasping for breath and had developed a sudden acute pain in her lungs, and she was sent home. On medical advice, Claire went to A &E another four times in the following months with severe heart palpitations, chest pain and after what felt like a stroke. For most of the summer of 2020 she was severely incapacitated, almost completely bedridden, with sensory overload, so she couldn’t watch TV, listen to the radio, read or sleep, and had to lie on her front as it was easier to breathe.

One night she felt immense pressure in her head, developed pins and needles in her arms and legs and was unable to move or call for help before she thinks she must have lost consciousness. It was so bad she was surprised to be still alive in the morning.

Her sons too had Covid during this time. The twins’ symptoms relapsed and remitted repeatedly over the following months, but – unlike their mum – they had periods of being symptom free. One twin had daily nosebleeds for several months, chest pain, blistered ‘Covid toes’, was totally wiped out and slept a lot. His twin brother had severe sickness and diarrhoea for weeks on end, with joint and abdominal pain. Her eldest son felt fine, but had blackened ‘Covid toes’ for several months. Claire was in phone contact with her GP for the children but didn’t seek other medical attention for the boys at this stage. With Claire bedridden, her eldest son had to learn to cook and did the cooking and laundry and other household chores - Claire doesn’t know what she would have done without him. With no family nearby, Claire relied on friends and neighbours to do the shopping.

The twins started secondary school in September 2020 but with symptom relapses, school Covid isolation periods and another lockdown they struggled socially at school due to all their time out. Claire was considering home schooling them while they planned to relocate to her parents’ village. One of the twins developed seizure-like symptoms. Initial tests showed signs of epilepsy, and they are awaiting further appointments.

Claire had been furloughed during the early months of the pandemic but tried a phased return to work in September 2020, working two days a week from home. She struggled so much, both physically and cognitively, that she had to stop work and use a combination of sick leave and holiday allowance until they ran out in April 2021. Her memory and concentration levels meant she was unable to do her usual work as a copywriter – she could barely compose a text message. Her workplace has been very supportive, adjusting her work to more verbally orientated tasks, such as client surveys, which she felt she could cope with. Although by no means what it was pre-Covid, over time Claire’s cognition improved so she was able to build up to some of her previous responsibilities and now works three days a week from home.

After 18 months of being ill she tried a private, three-week course of hyperbaric oxygen therapy, which overall she feels helped, although the benefits were offset by two major relapses caused by physical assessment tests during the therapy. Her GP has been supportive but doesn’t know how to help. “I know from people in our support group that some of the most upsetting and greatest causes of anguish and trauma have been from not being able to access medical help and being disbelieved or gaslit”.

Claire is very active in the Long Covid community after setting up a Facebook-based support group that is one of the largest of its type in the world and now part of the charity Long Covid Support. She was also a founding member of the NHS England Task Force for Long Covid and works with researchers. She co-founded the online Long Covid Choir, which was included in a feature on Channel 5 News and won a prize in an online community choir competition.

Claire believes there should be a wider use of anti-viral treatment for prevention of severe acute Covid as well as for people with Long Covid and thinks vaccines for Covid should just be part of the arsenal against Covid, alongside a wider range of mitigations.

Claire feels lucky she has such supportive parents, friends and neighbours and has been able to claim state benefits with the help of a friend who completed the paperwork for her. She is able to work part time and is financially more secure than others with Long Covid, but has to be careful as she now earns just over half of what she did prior to falling ill.

Claire is now a disabled badge holder, has ongoing symptoms and can only walk short distances and uses a wheelchair to aid her mobility. Although her health continues to be ‘dreadful in a lot of ways’ she feels her life has become very rewarding with her volunteer work with the Long Covid community. She says, “the people I’m meeting, the experiences I’m having, and the purpose that I’ve found in my life have helped get me through one of the most difficult times of my life.”

Single parent Claire had used all her annual and sick leave. She was relieved when her employer agreed to change her role to something more manageable.

So I, after about two and half, two- and three-quarter months, I said to work, “I just cannot, can’t manage this.” So I went off sick and then when my, in fact, because thank goodness of the furlough scheme, I hadn’t used any of my sick time and I was able, I was eligible for three months sick in a year. So when I took that, and I worked part-time, I was, I used to be four days a week. And so I worked and used up all my sick pay and all my holiday, and then it got to April this year, and I was a bit like, “Shit, I’m gonna have to get work,” cos I’m a single parent of three kids who gets nothing off of my ex in any way. So I was like, “Shit, what am I gonna do?” and that was a big worry.

But then my work were amazing, and I just told them what, I said, “I just don’t think I can do,” I said, “I’m no better than I was when I gave up, so if I start trying to do what I was doing before that is just going not work.” I said, “I need something that’s really, I can’t concen-, I can’t concentrate, my short-term memory is appalling.” I, I write for a living, but I said, “I just don’t think I can do that.” I said, “I can, I’d be better verbally.” And so I said, “if there’s something like client surveys I could maybe help with, where I’m not having to-,” cos my normal job I’m having to advise senior executives of multiple companies about regulatory requirements and best practice for their annual reports, so it’s quite, some of it’s quite technical, and you have to keep a lot of information in your head and there’ve been lots of regulatory change while I’d been off as well. So all in all it was just overwhelming. I said, “I just, really I’m not up to that.” And my work, thank goodness, it happened to coincide with the time of year when there’s a big seasonal need for client surveys, so that was really good timing.

And then over time I gradually, gradually, gradually just managed to do a little tiny bit more, and a bit more, and I think my, I’ve still got massive cognitive issues, but they did improve enough, and my confidence helped, you know, improved as well. So I’ve gradually better, but I still can’t do my job as it was, and I can, I do three days a week now and it’s a kind of dumbed down version of my job. And it’s so hard because I don’t know myself what I can do and so, they certainly don’t. It’s incredibly difficult for employers as well as workers as well.

Claire set up a flourishing online support group and campaigns for rehabilitation, research, and recognition for Long Covid.

I’d never set up a Facebook group before, I’m not very techy and I was really, I was just bedridden the whole time, and so I pressed a few buttons and pressed, made this Facebook group, and it spread through word of mouth, and has now got nearly 46,000 members in a hundred countries. So and soon after I took to Twitter, which I’d never been really active on before, but I’d already been, I’d started being active on it even before I started the group, to say, I was trying to kind of tag, I don’t even know how to use Twitter either, I just, I’m a novice at all this stuff really, but I was trying to tag influential people saying—because at the time the government was only talking about cough and fever as symptoms. And I actually didn’t have either of those, and nor did I have the loss of taste and smell which was added later, but I, myself, and my children didn’t have any of those symptoms. So, I was trying to flag people that we urgently [need] to update the symptoms list because people are inadvertently spreading this thing, not knowing that diarrhoea or their joint pain, or their sore throat or their headache, you know, they’ll be wandering the aisles of Asda spreading this around. But nobody was listening so when I then set up the Facebook Group and became very active, because we were invisible as a community, nobody, everyone was talking about deaths and hospitalisations, well they still do largely. Frankly, Long Covid is overlooked too much. And so yeah, very, very actively campaigning for, we came up with the three-word slogan of rehab, research, recognition is what we wanted, and just really just plugged away and, you know, all that stuff.

Claire explained that she did not often call the GP, with whom she has a good relationship, but did so when her son developed the ‘frightening symptom’ of blackened toes.

So, I didn’t seek medical attention other than when William said his throat was closing up. I didn’t seek medical attention for my boys. Well actually at one point I rang the GP because Thomas’s toes were really blackening, and I was, again it was late on a Friday and I was concerned that he might lose them, I mean I was like, “Should he be taking aspirin? Should he be elevating his feet? What should…?” And again, the GP said, “We just honestly don’t know.” And I was like, “At what point should I go to A&E?” And she said, “If they feel cold,” as in getting the circulation then at that point. Because I mean I know now that some people are having their toes amputated because of Covid toe, and I didn’t know that then.

And so yeah, James, because I knew they couldn’t help me even though I literally, I was dying a couple of times, I knew that there was no point in seeking attention for my children. I knew that no one could do anything. So, we just basically rested and rested and rested, yeah, so I’ve never had a symptom free day, at all. And but William and James sort of relapse and remit, and Thomas is, thank goodness always felt fine, so his toes just kind of stayed an alarming shade for lots and lots and lots of months, but didn’t seem to do him, you know, kind of cause him any bother.