The limbo of long COVID

UNISON members and reps talk about the debilitating aftermath of coronavirus

Though the UK government is adamant that we must now “live with COVID”, for an estimated 1.7m people – as much as 5% of the UK’s workforce – this actually means living with long COVID.

In March 2022, the All-Party Parliamentary Group (APPG) on Coronavirus published a report declaring that the impact of long COVID on the UK workforce is “likely to become endemic alongside COVID-19 itself.”

Long COVID is the umbrella term for a range of COVID-19 symptoms that have persisted for over four weeks. Symptoms commonly include – but are not limited to – fatigue, brain fog, shortness of breath, chest pains, insomnia, dizziness, joint and muscle pain, and heart palpitations.

So, how are workers managing long COVID? And how should employers be supporting them?

“It’s a lonely experience”

UNISON member Joe Spears has lost his job as a result of long COVID. He worked at an animal rescue centre in Liverpool for six years until he fell ill in December 2019.

“I came down with what I thought was a chest infection, which I just couldn’t recover from. When I went back to work after the Christmas break, I was overwhelmed with fatigue, a feeling of being so heavy that I wanted to collapse onto a heap on the floor. I end up feeling stressed because I can’t get anything done, and then the stress of that drags my energy levels down further.”

When lockdown began in March 2020, Joe was furloughed until November that year. Unfortunately, when he returned to work, little had changed: “I couldn’t mop the floor without needing to take a break. I went off sick from work in January 2021, and I never went back.”

In March 2021, doctors retrospectively diagnosed Joe with chronic fatigue syndrome (CFC) triggered by long COVID. “Testing wasn’t available at the time, but I had COVID symptoms and haven’t been able to recover,” he says.

“It’s a really lonely experience. You don’t look ill, so people doubt you. How can you make people understand that you’re so physically weak you can’t even get up the stairs some days? Even the doctors say they don’t fully understand how chronic fatigue works, because it’s so different for everyone.”

A key feature of long COVID, similar to CFS and multiple sclerosis, is that it’s a relapsing and remitting condition. For Joe, this has been the hardest part. “I can have good days where I can get on with things, but other days it can hit me completely out of the blue and I’m knackered. There’s no progression, it’s so frustrating. There are days when I have more energy, so I do a bit more, then I get an energy crash. It’s been hard to get a handle on that.”

Joe survived on statutory sick pay for six months, and then applied for employment and support allowance (ESA), a type of benefit for people who can’t work due to illness or disability.

“In the ESA interview, they asked me if I could make a cup of tea and dress myself. Because I answered yes, they decided I was capable of work, and therefore ineligible for ESA. I’ve worked my whole life and paid into the system, but now that I need support, I can’t access it.”

In September 2021, Joe found out that he’d lost his job. “I got a call from a colleague telling me he was sorry to hear I wasn’t coming back. My manager had told the whole team I had been let go before I even knew myself. I was so heartbroken and angry.

“Her rationale was that if they took away the physical aspect of my job, there was little left. I could have done some of the less physical work, answering the phone, but that wasn’t an option apparently.”

Joe is now completely financially reliant on his partner, and left grieving the life he used to have. “I feel forgotten about, that I don’t matter.”

‘At one point I thought: ‘Is this the job for me? Am I able to do it any more?’

UNISON NEC member Manjula Kumari works as a supported employment officer for Walsall Council, supporting adults with disabilities into employment or training.

When Manjula returned to work after contracting COVID-19, she found herself having difficulties stringing sentences together. “When I got back to work after being off sick, I was forgetful and couldn’t focus. I couldn’t remember words, and trying to communicate became like a game of charades. I had trouble being able to read or write, which is an issue as my work depends on reading and writing case reports.”

A local long COVID clinic likened Manjula’s symptoms to those of a mild stroke. “It turns out I’ve got long COVID dyslexia. When I see writing, I can’t focus on the words. I used to be an avid reader, reading two to four books a week. Now, there are some days at work where I’ve done no more than two paragraphs.

“At one point I thought: ‘Is this the job for me? Am I able to do it any more?’ My team and manager are really supportive, but some days I’m frustrated and tearful. I feel like I’m putting more strain on my team, but I’ve had to re-programme myself to just ask for help.”

Manjula has also struggled with fatigue, joint pain, heart problems and has lesions on her lungs as a result of continuous coughing. She says her manager and team at Walsall Council have made all the difference to her life with long COVID. “Whenever I’ve been struggling, my manager’s response has always been, ‘How can I help?’.”

However, absence policies remain a source of strain: “I book annual leave when I need to take rest days because I don’t want it to affect my overall sickness absence. I feel guilty taking days off sick for it,” she says.

“Long COVID needs to be recognised as a disability, then my Bradford factor [a formula used by HR departments to calculate the impact of employees’ absences on the organisation] won’t be taken into account. People with long COVID need to be supported, because stress and anxiety only make you feel worse”

Disability equality and reasonable adjustments

At Lambeth Council, UNISON assistant branch secretary Roger Lewis has successfully fought for long COVID to be considered a disability.

“Long COVID is not a sickness”, Roger explains. “Everyone struggling with long COVID must be protected by the 2010 Equality Act, which recognises that any condition that is ‘substantial’ and ‘long term’ is a disability. If it’s likely to last 12 months or more, the employee needs support. Long COVID absence should be recorded separately to sickness, and reasonable adjustments should be made.

“People with long COVID fit into two groups: those who are off work indefinitely with COVID-19 that has turned into long COVID, and those who have long COVID and are experiencing problems back at work.” For the latter group, Roger says reasonable adjustments are essential.

“Managers and HR need to be proactive about checking in, and be flexible about hours and days, understanding that symptoms can come and go. Someone may be fine in the morning then hit a wall and need to go home. If that happens, managers need to reduce workload and pressure.”

UNISON national officer for disability equality Deidre Costigan comments: “Many of our members are struggling with employers who don’t accept that long COVID may mean they are a disabled person with protections under the Equality Act.

“Our local UNISON reps are doing great work, employer by employer, to fight for reasonable adjustments. But the government needs to do much more to make it clear that it’s the employer’s responsibility to make changes to the workplace.”

UNISON is also pushing for COVID-19 and long COVID to be recognised as industrial diseases, so that workers who were exposed delivering essential services when the country was in lockdown can be compensated.

Download the All-Party Parliamentary Group’s long COVID report

15 thoughts on “The limbo of long COVID

  1. John Stanley says:

    Hi there,

    This article has really made me feel happier that I am not the only one experiencing these types of issues post covid 19. I had it last August 2021 and seemed to be fine until before Christmas. I had a fair few triggers leading up to make the decision of throwing the towel in. The first one a family member past away suddenly from an aneurysm during the peak of the pandemic. I did not get a card from that family member in December. Second asked to be on standby for business over Christmas period, felt obliged to do so as previously been on furlough. In addition my family where unable to come and visit me over this time. The third thing which tipped me over the edge was the getting additional pressure put on me in work which put me in a spiral that evening. I had been struggling unknowingly with fatigue and lack of sleep. I then spent 2 weeks in bed and felt I had suffered a burnout. I spoke to the doctors they said to me it could be either chronic fatigue syndrome or long covid. After having bloods done we were able to rule out any problems with deficiencies or other disabilities eg diabetes. The doctors believe it could be a chemical inbalance in my brain and have put me on anti depressants to help balance it out. The reason I have been put on these is because I am experiencing fairly bad anxiety. Prior to this I have never had an issue dealing with my anxiety or stress in the work place. I thought I would share my story as I actually got very upset reading Manjula Kumari account. I too have to read and write competently in work to publish instructions, review specifications inline with these too and design tools. In addition put together improvement projects and write up presentations. I have been off work for 4 months, so far had 6 counselling sessions, done several meditations, bough a book to help me understand the mind more and been signed off by occy health. The current long covid advice is to follow the 3P’s everyday and try plan 5 achievable activities a day. I have been having some good days and some bad days and stress seems to trigger me to stop during the day and go into a sporal of emotions normally silence and anger. I do still feel I am struggling to feel right still and I’m trying to get myself back out there to deal with the world but it’s taking time and I am getting frustrated with myself. I have been on a referal list via the gp for 4 months now and not hear a thing yet.

  2. This was interesting to read. I worked as a TA in a school and have a condition which meant I had to shield at home. I continued to work from home doing admin work and later marking school work via my lap top. When the government ended shielding I returned to work where I believe I contracted covid. I was unable to return to my job due to the symptoms of long covid which you describe. After being contacted several times by my employer about returning to work I felt obliged to admit I couldn’t do my job anymore and resigned.
    That was November 2021. I am still waiting to receive my private company pension as I’ve had to submit medical records so I can receive my pension without it being reduced due to early retirement.( It’s not a lot ) My husband is supporting me but he is struggling to continue to work after lung damage due to covid.
    Where is the help?

  3. AM says:

    I wish people would realise that the long-covid symptoms in which many now have are exactly the same as the Fibromyalgia symptoms some of us sufferers have had for many years, I cannot see how the two are still being seen and treated differently. Fibromyalgia sufferers experience long-covid symptoms and vice-versa, so, do those who are being told they have this new condition ’long-covid’, really have Fibromyalgia instead? As illness can be a trigger for it to start…. Just saying!

  4. I have been diagnosed with long covid back in December 2021 and my employers at the time, did not believe me even though I had all the tests and my gp had referred me to the post covid clinic and all my colleagues contracted it in the office in October 2020 and I was classed as clinically vunerable.

    I struggled to keep going with the massive workload they were expecting me to manage while suffering with the symptoms of fatigue brain fog, lack of concentration and shortness of breath.

    After the Christmas break I was let go, as my manager had made me feel like my illness didn’t exist and indeed I was making it up and had no compassion for what I was going though on a daily

  5. Anne Blake says:

    Im happy to read that Unison is looking into Long Covid as i have been struggling with it for a year and a half now

  6. Dave says:

    I contracted COVID from my workplace at a University in March 2020 and was hospitalised. Under extreme pressure from my manager I returned to work after a month and I tried to work from home over the summer.

    I was at the end of my probation period so my manager and the HR department at the University engineered a disciplinary, told me I would be dismissed because I wasn’t yet able to perform at full capacity. To preserve my chance of getting a job in future I was forced to resign, citing that I was retiring early to look after my health. I never heard another word from the University and was left completely unsupported in my recovery.

    I struggled to breath properly for 6 months after I caught COVID, and my mental capacity was significantly diminished for at least a year – probably suffering from PTSD due to the whole experience. I also now have lesions on my liver and adrenal gland.

    I had a successful career, working without a break for over 30 years before COVID. I have been unable to work since and am reliant on a small pension. Long-COVID has had a devastating and permanent impact on myself and my family.

  7. Darron Ward says:

    Thank you for this article, really helpful.
    My branch office (Croydon – Secretary Yvonne) have been brilliant in helping me.

    My previous manager Rebeccah was brilliant, but she has left Croydon Council for a new job.

    I have been without any management support since 11/03/2022. Nearly three months now and my work is suffering. My health also, Rebeccah would phone or zoom with me a few times a week – to check how I was.

    I have asked my Drs and other professionals if there are any tests or trials I can take part in? Anything to help find a cure or a remedy to make this easier.

    I caught Covid at the very start, and I continued trying to work and deliver vital services. We didn’t know about Long Covid – so I thought it was “just me”. So I spent a miserable 8 or so months trying to help people run Homeless Hostels and rough sleepers.

    I am single, this has definitely impacted any recovery I may have had, I have no friends or family near me who can “pop in” and help. So – even when ill – if I need anything I have to either fight the fatigue or just go without.

    I am often to ashamed to let people in the house due to the mess.
    I also cannot be relied upon to actually make it to a social appointment.

    Happy to talk more,

    Thank you

  8. Jason Miller says:

    I am ourrently living with the debilitating condition of Long Covid and associated illnesses it’s given me. To date I have been off work for over 8 months but have had this illness since catching Covid in March 2020.
    When I got over the initial virus I was left with ongoing symptoms until a major relapse in late 2021.

    I am a front line worker for the police and fell ill with the virus whilst on duty and also when I relapsed, I’m sure there were people at work who had the virus but were continuing to attend.
    I am now in process of the stressful part of trying to get back to work (I am not better, but can’t afford to stay off work in the current climate) and doctors have said I can only do 2 hours a day, I am finding the hardest part being dealing with HR department who in my opinion are not interested in my well being and return to work unless I can do what they say.

    To date I have had nearly 60 doctors and hospital apppointments and currently have 5 referrals to different related specialists for my illness, some of these have been 6 months+.

    I fully support what Unison are trying to achieve for their workers, the future looks very bleak and with limited treatments out there, sufferers are struggling on a daily basis and a lack of support only adds to the anxiety of not knowing when /if I will recover, if I will be able to return to work and keep my job or face a life of uncertainty and potentially out of a job.

    We need the government to act, not in a years time – NOW !!!

  9. maureen dailly says:

    My husband has been off work since November 2020 with long covid it not only impacts his life but mine to ive been off work since March 2022 with a spine fracture which i am sure was caused by looking after my husband with personal care

  10. Pauline Blackstock says:

    I’m still recovering from Long/Post Covid and I’m only getting half pay. I feel enough is not been done for those who are suffering with the long term effects

  11. Susan walker says:

    I have Long Covid. My doctor didn’t believe in it.

  12. Anon says:

    Children are also getting long Covid to. I am currently trying to juggle working and managing childcare for my daughter who is being investigate for Long Covid.

  13. Jason Miller says:

    Ive been battling long covid and a vast array of 25 – 30 debilitating symptoms since October 2021. I work in the police and believe i got the initial virus whilst attending covid relating jobs.
    Long covid for me has since led to Mast Cell Activation Syndrome, anaphylaxis, heart issues, high blood pressure etc.
    Work have been generally supportive but the HR process of hours of return, when ready is going against what all the doctors have said (more per day to start) and potentially setting me up to fail and overall this has led to me suffering from anxiety due to worries i have about losing my job which i have done for over 10 years.
    I know a number of people who have died from covid and find myself in a position of potentially being unable to work long term – if MCAS worsens and the dreaded relapses keep occurring! there needs to be more done at a government level – i am not alone in my suffering.
    There are many in my organisation in a similar position who are losing out on wages – cut to 50% after period of time off.

  14. Colleen says:

    As I read this article, I relate so strongly to so many of these experiences! I’m flabbergasted at how much I feel redundant & useless after a COVID positive illness in September 2021. I have had my work hours reduced, felt bullied at work by one senior colleague, even though my manager is trying to be supportive. Referrals to Occupational Health, warnings of “no more sick absence in 3 months”, limited “phased return to work” to two weeks. And, 12 months later, I’m finally about to start the treatment I need, after loads of sickness episodes, stress, anxiety added to all the post COVID symptoms & adverse financial impact of reduced hours. Prior to this illness episode, I was active, vibrant, energetic, hard-working & positive person. I now have limited mobility, but working hard to improve that.

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