West Lothian mum-of-four with long covid forced out of her job says sufferers 'left high and dry'

A mum-of-four has spoken out about being ‘pushed out' of her job since she became ill with long Covid.

The 50-year-old has been living with extreme fatigue and myocarditis (inflammation of the heart muscles) since early 2022 but says she feels ‘invisible’ and is calling for more support for those living with the devastating condition.

Speaking to the Evening News the woman, from Blackburn, claims she was pushed out of her job when fatigue kept her off work. The care worker asked not to be named, out of fear it would damage her chances of getting work.

She said: “I was so ill when I got Covid I couldn't breathe for many weeks and at one point I thought this is it, I am going to pass away. It was horrific. I started to recover a bit after six weeks but it left me exhausted. I had this terrible brain fog too. Some days I couldn’t get out of bed and I couldn’t remember a lot, I even forgot people's names. It was a terrible year.”

But instead of being given support she claims she was unfairly treated. “I was quietly fired. They tried to claim I wasn’t capable of the job though I have decades of experience and am more than qualified. People like me, who have worked hard all our lives, have been left high and dry. It’s so unfair. There’s definitely a lack of understanding and a stigma about the condition.”

Before getting Covid, the care worker walked up to 10 miles every day, cycled and even did marathons for charity. Now she has a mobility scooter for days when walking is a struggle. She got another job but since that contract ended after a year, she has struggled to get back into work leaving her worried about what the future holds for her family.

“I was the main earner in the house as my husband looks after our children. Now I feel like I’m letting everybody down. I’m trying to get another job and slowly getting my confidence back. But It's soul destroying, I feel invisible. There are no clinics for the condition, the benefits system is a nightmare so the only real help I’ve had is from Chest, Heart and Stroke Scotland (CHSS).

“People like me have been abandoned. We’ve been forgotten and it’s unacceptable. I did everything right in my working life, went to university and always had good jobs. But now I have been left to struggle and it’s not good enough. People like me need help.

“I have been shocked at what I’ve found. I’m desperate to get off the benefits system and back to work, it isn’t designed to help, it’s designed to confuse and deflate you. I want to work. I need to work, and I’d take any job I can find. But I have chronic fatigue and now I have to take medication for myocarditis. I have to classify myself as disabled, and that puts a big black mark against me. If I can’t get a job that takes my health condition into account, then the government needs to step up and offer me and others like me better financial support.”

Nearly 200,000 Scots are currently battling the long-term effects of Covid. Lives and livelihoods have been shattered by what could come to be regarded as the biggest mass disabling event since the First World War. But campaigners, politicians and charities have slammed the response from governments as ‘almost non existent’.

The Edinburgh mum has found the CHSS Long Covid Support Group to be a lifeline. “Since I got Long Covid, the only support I have had has been from CHSS. Nothing from the NHS, from the local authority, from the government. It’s a shocking state of affairs that a charity has to step in to do their job.

“We are just keeping our heads above water right now, but it is so difficult. We have run out of savings now. I know there are many people worse off than us, and I try to stay positive, but it is so hard. If I don’t get another job soon I really worry for our future as a family. I can only thank CHSS for stepping up when no one else will.”

A survey by CHSS revealed that a third of people living with chest, heart and stroke conditions and long Covid had cut back on essentials such as heating as a result of the cost-of-living crisis. The charity is calling on the Scottish Government to provide additional financial support for those living with long-term conditions this winter

Jane-Claire Judson, chief executive of CHSS, said: “The cost-of-living crisis is a cruel reality for many but is especially challenging for those living with long-term conditions. As we enter a second winter of sky-high energy prices and food costs, it is extremely concerning that a third of people living with our conditions have been forced to cut back on essentials.

“Cutting back on heating and nutritious food can exacerbate long-term conditions and increase the likelihood of rehospitalisation for some, putting additional pressure on the NHS at an already challenging time. An ongoing plan needs to be put in place for financial support before yet more people living with long-term conditions are pushed into poverty.”

The Scottish Government has been contacted for comment.