Michelle
In March 2020 Michelle and her family caught Covid on a cruise ship off Australia where 30 people died after catching Covid. Michelle and her son were both very ill with Covid once they returned to the UK; however, her wife Lindsey had very mild symptoms and recovered quickly. Michelle and her two-year-old son both continued to be very unwell and have developed Long Covid symptoms that still affect them 21 months later. It has affected every aspect of their lives, ’It’s affected our relationships, it’s affected our finances, our future, our... you know, everything’. Michelle was interviewed in January 2022.
Michelle and her wife (Lindsey) were both teachers who have a young son who was two at the start of the pandemic (now 4). Michelle has three older boys from a previous relationship aged 23, 30 and 33. Ethnicity: White British.
More about me...
Michelle and her wife Lindsey were both teachers and worked very long hours so had decided “we didn’t want to live in the rat race anymore.” They sold their house and planned to travel the world and ‘world school’ their young son. In March 2020 they had reached Australia and were on a cruise ship to New Zealand when the Covid pandemic hit. They had heard about Covid but didn’t really think it would affect them. Michelle and her two-year-old son fell ill on the cruise along with many other passengers. People were coughing but no one mentioned Covid and no measures to restrict the spread were taken on board. Both Michelle and her son had sickness, diarrhoea and bad headaches. They felt they got very little information from the cruise company and were worried about what to do. New Zealand was closing its borders and they were informed that the ship had 24 hours to return to port in Sydney before Australia too would close its borders. On returning to land, they were told they needed to return immediately to their home country, but Michelle and Lindsey had sold their house in the UK and had nowhere to return to.
Michelle feels they were hastily disembarked from the ship by the cruise company without any testing and no one confirmed there was Covid on board the ship and the only information they were given was “Go home and isolate.” Michelle and her son were both coughing by this time. They drove straight to Melbourne, left their car and all their belongings with a friend and booked a flight to the UK. During the flight they got a text from New South Wales Health to say there was Covid on board the ship and they were a close contact. They had masks from the bush fires in Sydney so wore those on the flight back to the UK. Michelle was convinced she had Covid, but they didn’t know what else they should do but follow the advice given to return to the UK. The flight was full of people coughing.
The news from Australia was very worrying – “at the time was you either get it and you’re asymptomatic or you get it, and you die”. When they landed in the UK, it was as if “people hadn’t even realised that it was here”. They had rented a cabin close to the airport to isolate in. Michelle felt very unwell, saying “Every day I could see that more people were dying off the ship.” After 2 days Michelle contacted 111 and said she had Covid and couldn’t breathe and paramedics were sent, her oxygen saturation was one point above the admission level of the time, so they didn’t take her to hospital. She said, “I just felt that when they left me, they were leaving me to die.” Her wife had mild symptoms and recovered quickly, and she looked after Michelle and their son who also was very ill.
Her son stopped breathing and was rushed to hospital with Lindsey. Michelle continued to struggle to breathe and started coughing up blood clots and having chest pain - 111 sent an ambulance but again they failed to take her to hospital - she is still not sure why (it was the first day of lockdown 23rd March 2020). “They’re still denying we’ve even had Covid. They’re like, “Well you’ve not had a Covid test,” like, “Well, how the hell do I get a Covid test? Test me; test me now.” Doctors treating her son also denied he had Covid even though he was clearly very unwell and didn’t test him. Michelle blames this denial and lack of appropriate treatment for her son’s long-term respiratory issues, flared ribcage, long term steroid use, repeated infections and need for antibiotics and non-epileptic seizures.
After three weeks in the cabin, they moved in with Lindsey’s father, as they had no home, jobs or income. Michelle still couldn’t breathe properly, was coughing, had fatigue and brain fog. Her son also continued to be unwell. Her wife got a part time job in a supermarket but after a few weeks they decided to move closer to Michelle’s parents as her dad had been diagnosed with cancer. Lindsey supermarket job was transferred to the area, and they rented a property. Lindsey started work at 5am and returned home at midday to care for them; Michelle and their son were usually still in bed. It was at this time their son started having non-epileptic seizures, five weeks after the chronic phase of their Covid infection.
They didn’t realise what was happening at first with their son, so it wasn’t until after the second seizure episode a few days later that they took him to A & E. Michelle sees this as the start of their Long Covid journey. At this point Michelle and Lindsey had an antibody test for Covid, which proved they had had Covid. Her son was also tested but his came back negative for antibodies, which she couldn’t understand, and it took a long time to convince doctors that her son’s health problems were Covid-related. Eventually in January 2022, almost 21 months after catching Covid, he was diagnosed with post-Covid syndrome. Their son is now four, attends school when well, but as well as his Long Covid symptoms, he has minimal verbal skills and developmental delay. They don’t know if these were caused by having Covid.
Michelle has attended a Long Covid clinic, which, although it took a while (“I was meant to have been referred but I wasn’t, I’d fallen through the net”), she has found it very helpful and has just pushed for her son to be referred to one as he now has a diagnosis. She had psychotherapy sessions, physio and OT sessions and been on a Long Covid self-management course. Seeing other people and being part of a group has helped “Because having Long Covid, you are really isolated, I think.” She is full of praise for the support of her GP and surgery, but it took time to “build that relationship and that grounding and understanding” about her Long Covid and even longer for them to accept her son too had Long Covid.
They faced a difficult time at the beginning of Covid from friends for flying home when they were ill, even though they were following the instruction given by the cruise company and had isolated in their hotel, before flying home. They had to send a picture of the instructions the cruise ship had given them to prove it. As a consequence, this has limited their support network massively. They are now part of a court case against the cruise company for not taking measures to protect them and other people from Covid.
One ‘saving grace’ for Michelle is that coming back to the UK meant she got a chance to say goodbye to her dad who while having cancer treatment caught Covid and died. She is still very fearful that her mum might get Covid.
Michelle had been vaccinated and although she was okay after the first dose the second made her very ill and she has since developed new symptoms that she previously hadn’t had, such as neurological problems and allergies. They are too scared to get their son vaccinated due to Michelle’s reaction to the second jab.
Michelle, 21 months on, is still unable to walk properly, has breathing problems, muscle and joint pain, fatigue and brain fog, but all the tests she has had have come back normal. She was eventually able to get disability benefits for herself and her son and has a mobility car and home adaptations but found the benefits process extremely challenging and upsetting. Michelle feels it has affected every aspect of their lives, “It’s affected our relationships, it’s affected our finances, our future, our... you know, everything.”
Although medical professionals were reluctant to recognise it, Michelle was sure that their son had ‘post-Covid syndrome’.
Although medical professionals were reluctant to recognise it, Michelle was sure that their son had ‘post-Covid syndrome’.
And then in the hospital they... he... it was on his notes, he’s got post-Covid syndrome. It... it just took such a long time for it to filter through that he’d got post-Covid syndrome, and then finally, like, the consultant that came round, the paediatrician, she said... we’d started talking about... post-Covid syndrome, and she said, “We’re just seeing so many children now with respiratory infections who just cannot shake...” after Covid, the... you know, the lung the lung issues, and on our... on our ward there were loads of kids with, like, breathing difficulties, coughing, you could just see them barking like dogs.
Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.
Michelle thinks that some doctors don’t believe that young children can get Long Covid. She said she struggled to get her GP to believe her child was experiencing it and refer her son to the Long Covid clinic.
I went back to [doctor] and I said, “Look, can it be feasible...” because the... Vinnie had been taken into hospital in June and they kept dismissing Vinnie’s Long Covid as well, and I just wrote him an email and I said, “Look, I want you to just stop for a second and accept the fact that isn’t it feasible that, you know, if I’ve got Long Covid, that Vinnie can also have Long Covid, you know, just for a second, can you just contemplate it?” and he must have, like, read my email as well and gone, “Well, actually you’ve got a point.” And I sent him a video of Vinnie’s seizure and... but it’s had to be done through email, I couldn't do it... and the eConsult system doesn't work for me because it... every time I tick the box, it sends me to A&E, and the same with Vinnie because there’s a consult system and those systems, like, literally, because it says if you've got a headache with a chest pain, you've got to go to the... you've got to go to the doc- the hospital.
Well, I... like, you know, we constantly live with Long Covid, with chest pains or headaches, or you know, and... yeah. All of our symptoms are such that we’d end up in A&E every five minutes. But yeah, it... it took a lot of those kind of emails I think initially to build that relationship and that grounding and understanding, and I think I just was very forceful of the fact that you can’t dismiss me and you can’t dismiss this with something else, because anytime that... like, every time we went to the doctor’s, we dealt... for Vinnie, we dealt with a different doctor who kept saying things like, “you don’t know it was Covid, you don’t know, you don’t know”, and I would just standby it and say, “This was down to Covid, this is Long Covid,” and... and it... but it has taken a lot longer for Vinnie because even up till my last thoracic clinic appointment when I said, “And my son’s still got... my son’s got Long Covid, he’s four,” he went, “Children don’t get it,” and I went, “How can you even believe that?” and that was like a... a thoracic... a Long Covid thoracic clinic consultant.
And I had to say to him, “I can’t believe you think that,” I said, “you need to really have a better understanding because children do get Long Covid.”
At one point, Michelle thought people were thinking she’s “a mad mother” but she knew what her son was experiencing because she had the symptoms too.
At one point, Michelle thought people were thinking she’s “a mad mother” but she knew what her son was experiencing because she had the symptoms too.
And I think for kids, when they can’t tell you what they’re feeling, it is so difficult, and up until now, you know, it has been hell really for us to even try and gauge, you know, what he’s been going through. I can’t even begin to imagine, because the only way that I can imagine is because I know what I’ve been going through, and when I’ve been his voice, sometimes I’ve felt like people have thought, like, she’s got Munchausen’s by proxy, you know, she’s just saying that he’s feeling this or feeling that, and they think that I’m a mad mother, but the only reason I’m doing it is because I feel like I’m the only person that can know what he’s been going through, and now he’s verbalising those things, like his pins and needles, you know, I know what the pins and needles feel like because I’ve had the pins and needles, I’ve got the pins and needles. When he says his brain hurts, I know what it’s like because I have the migraines every week, I know what they... that headache feels like, so yeah.
Michelle’s 4-year-old son started to be able to verbalise symptoms, like ‘brain cold’, as he got older.
Michelle’s 4-year-old son started to be able to verbalise symptoms, like ‘brain cold’, as he got older.
I think because it’s all he’s ever known it’s been part of his life. I think now he’s getting a little bit older, he’s just started to verbalise things, so he’s just started to be able to say things like, “Brain,” “brain cold,” and this week he went and got a towel out of the kitchen and he made me run it under the tap and put it on his head, and he’s been able to say, “Legs hurt,” he got, “Noodles,” so for ages I couldn't work out what the ‘noodles’ were but they’re pins and needles. So, it’s like it’s opened up a world for us really with him being able to just say the odd word and being able to work out what it is.
Michelle’s Long Covid symptoms made it difficult to complete the PIP forms and interview.
Michelle’s Long Covid symptoms made it difficult to complete the PIP forms and interview.
I first of all thought ‘I probably need to apply for some sort of benefit to support us’, and I knew that physically I... I wasn’t in great shape, so I thought the first one... because I’d helped... supported my mum, apply for Personal Independence Payment, a PIP payment, I thought that I would apply for a PIP payment, and so I thought ‘I’ll do that one first’, because I’d had experience of it with my mum, and when I’d done it with her, I’d obviously had... I was in the right frame of mind and I was pretty well and healthy, I’d got all of the supporting evidence and documents and it had been pretty straightforward, I’d felt [laughs]. So, I thought I’d apply for it for myself, and I thought that it would be easy: oh, how wrong was I.
I tried to phone up first of all. Now, trying to do that when you have got a sick two-and-a-half-year-old, I think he was two and a half at the time, around, and I was on hold to try and phone up first of all to get the form was a challenge in itself, so I was put on hold and at first I thought I’d be on hold for 10 minutes, so I’d hold for 10 minutes and when, like, Vinnie would be trying to demand something from me and he would be sick, I’d be sick, I’d wait for 10 minutes and then I’d pink... think, ‘oh they’re busy, they’re not going to answer the phone’, so I’d put the phone down when they didn’t answer it after 10 minutes. So I think that went on for quite a while and it put me off to start off with, so I didn’t apply initially for a while, and then I realised that I couldn't apply online for this payment so I... so I tried to do it online, and I tried to do it at night when he’d go to sleep, but it wasn’t going to be that straightforward; I had to phone up to get this form that I had to fill out.
Back to the PIP application: on hold for an hour, eventually got through and they sent me a 44-page document, yeah. That sat in the cupboard for about, I don’t know, eight weeks, because every time I opened it, I then couldn't actually answer the questions when it had been really easy to fill out my mum’s form, I just kept looking at it and thinking ‘how the hell am I ever meant to answer that?’ So I think I had a deadline to answer it and I... as the days ticked by, I think the deadline probably was coming up and they text me, and I’d put it to one side and I just couldn't deal with it, then they kept texting and saying, “Your deadline’s approaching and you haven't filled... return this form,” so eventually I, kind of like, filled it out to the best of my ability at that point and then returned it, 44 pages. And then they wrote back and said, “We’re going to arrange an interview with somebody who will phone you.” So, they arranged an interview, and I think this is about... it... it had taken me about... the... we got back in March, I think I had the interview around about December, so it had taken me that long to deal with it.
Michelle applied for PIP for her son’s learning disabilities rather than his Long Covid as she didn’t think his Long Covid would be recognised.
Michelle applied for PIP for her son’s learning disabilities rather than his Long Covid as she didn’t think his Long Covid would be recognised.
He had also got his own challenges, so, you know, there was a possibility that maybe, just maybe, he was entitled to some sort of support, and I just thought ‘well, I’m not going to fall down the same traps that I had fell down’, so I thought ‘I’m going apply for him’, so I decided to apply for the child’s version of what I was getting, Disability Living Allowance, and did my background homework and didn’t focus too heavily on the Long Covid stuff because obviously when the world outside is saying Long Covid in children doesn't exist, it’s very, very difficult to try to convince other people that it really does exist, you know, it was hard enough to convince the adults of the world that it exists in adults, so to try and convince the adults that it didn’t exist in children is even harder.
But because Vinnie has got those developmental delays as well going on, which we don’t even know yet if they’ve been caused by Covid or not, you know, and they’re... you know, there is a strong, strong possibility that Covid has played a large part in the developmental delay that Vinnie’s got, you know, he’s got those so I listed those as part of his challenges, but we applied for that and that was awarded.
Michelle recognised that what they had was Long Covid when they searched online.
Michelle recognised that what they had was Long Covid when they searched online.
I was, like, ‘I don’t know, kind of, what is wrong, but I know something is, like, seriously wrong.’ And I’d started Googling to see if anybody else was suffering from the same thing and we were, kind of like, April time and people had started putting out, on the social media, about Long Covid, long-haul Covid and I just thought ‘Yeah, that is absolutely what I’ve got.’ I’ve got, like, the fatigue, I could barely stay awake, I could...the pain was unbelievable, so I just knew something was bad.
It would...there’s elements of it that were really helpful, and it was just nice that other people with Covid, that had had Covid and had got Long Covid, were there and you could see them on the Teams screen, and that I didn’t feel like I was the only person in the world with it anymore. Because having Long Covid, you are really isolated, I think.
You know, whilst you know that there’s another 46,000 people in the Facebook group...like, in [local town]...because it’s obviously just a [local town] based thing, there was like, 10 people in my group and they were there on the screen in front of me, and yeah, it was just nice to see that I wasn’t alone anymore and that there was some older than me, I was probably the youngest of our group, and there was days when I was sick and I was ill, because my immune system wasn’t great. Oh, they did this problem-solving thing, so you’d bring a...it wasn’t...yeah, it tended to be me because I was the most outspoken probably, but we’d bring a problem and then everybody would pitch in to answer the problem.
Michelle had a temporary reaction to her own vaccine and is concerned that if her son is vaccinated it might make his Long Covid worse.
Michelle had a temporary reaction to her own vaccine and is concerned that if her son is vaccinated it might make his Long Covid worse.
Michelle: No, and we’re scared of the vaccine because of what happened to me. Because I know that...you know, having had Covid, Covid doesn't agree with me, and then having had the vaccine and not being able to walk afterwards, and the right arm neurological issues, if the vaccine didn’t agree with me, is the vaccine not going to agree with him because of his Long Covid, so, what do we do? You know, the vaccination situation is, like, a massive contentious issue, we’re too scared to vaccinate him, and vaccinate him full stop at the moment. We’re too scared to put anything in his body—
Lyndsey: He’s behind on—
Michelle: He’s behind on everything because we’re just literally petrified; we’re just scared of every…we just don’t know. We just don’t know what to do anymore I think, that’s pretty much where we stand with him.
Michelle worried about whether her child would be able to go back to school and how Covid would carry on affecting people in the future.
Michelle worried about whether her child would be able to go back to school and how Covid would carry on affecting people in the future.
But school does pose massive challenges and being around other people, but it’s just, I don’t know what the...how the future is ever going to pan out because every time...like, over Christmas he was on a course of antibiotics, two courses of steroids and two courses of antibiotics, we managed to clear up the previous infection that he had, I think we’ve had about seven days of wellness, he went back to school for...he’s been back at school for a week and he’s gone [swish sound] straight back into a period of un-wellness.
Michelle’s hopes and dreams were “pretty much shattered” because of how Long Covid has affected her and her son. She could no longer “plan years in advance.”
Michelle’s hopes and dreams were “pretty much shattered” because of how Long Covid has affected her and her son. She could no longer “plan years in advance.”
So, how’s your day-to-day family life different at the moment?
It’s not how we ever wanted it to be. I mean, our hopes and dreams are pretty much shattered, that would be how I would start by saying, I think we dreamed of travelling the world, and I know Covid has stopped that for everybody, but, you know, I dreamt of Vinnie learning to surf before he could walk kind of thing, and, you know, he loves swimming, he loves...he loves sport, he loves the water, he loves music, and we love art galleries, and we love history and we love...you know, that kind of stuff and we love learning about the world in the world, so to be cooped up in four walls is, kind of like, the worst nightmare for us.
It’s... it is tough, you know, we’ve been through some really, really difficult times and it’s been probably the hardest time of my life ever. Covid has literally rocked our world and I... you know, I say that I will recover but I don’t actually know if I will if I’m honest with you. My legs...every day I hope my legs will get better, but then I can’t walk to the car and I think, ‘Jesus, will...will my legs get better?’
And then I stumble for a word and I think ‘God, I thought I was over this’. So...
