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 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 onboard. 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 onboard 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 onboard 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’s 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.”