People suffering from long Covid have reacted with alarm to comments by government’s equalities watchdog that the condition should not be treated as a disability.

Under the Equalities Act, anyone with a physical or mental impairment that has lasted for longer than 12 months and substantially impacted their ability to carry out normal day-to-day activities qualifies as disabled and is entitled to protection to ensure that they aren’t discriminated against in the workplace. This includes requesting that their employer makes “reasonable adjustments”, such as flexible working hours or home working, to ensure that they can continue working.

In a tweet posted on Sunday night, the Equalities and Human Rights Commission (EHRC), which was set up to promote and enforce equality and non-discrimination laws said: “Discussions continue on whether ‘long Covid’ symptoms constitute a disability. Without case law or scientific consensus, EHRC does not recommend that ‘long Covid’ be treated as a disability.”

The statement prompted immediate concern and confusion from long Covid support groups and unions.

Alice Arkwright, policy and campaigns support officer for the TUC, said: “We are concerned that this tweet may give licence to employers to not provide those reasonable adjustments, when actually, there is a very clear definition of who is disabled under the Equalities Act.”

Dr Jenny Ceolta-Smith, an employment advocate for Long Covid Support and co-founder of Occupational Therapy for Long Covid, said: “There is already disbelief of workers’ long Covid symptoms within the workplace, and this harmful announcement by the EHRC may make it much harder for workers to gain the support that they need from colleagues and line managers. It may even mean more jobs are lost.”

According to the latest data from the Office for National Statistics (ONS), an estimated 1.7 million people in the UK (2.7% of the population) were experiencing long Covid symptoms lasting longer than four weeks as of 5 March 2022. Of these, 784,000 said they’d been affected for longer than a year, and 74,000 had been experiencing symptoms for at least two years. Of those affected, 322,000 reported that their ability to undertake their day-to-day activities had been “limited a lot”.

Within this group, there will almost certainly be people who would qualify as disabled. However, “It’s not like a lottery ticket; just because you say something could be considered as a disability, it doesn’t automatically get people blue badges and benefits,” said Lesley Macniven, an HR consultant and founder of Long Covid Work, which supports long Covid sufferers with workplace issues.

“All it does is put a little bit more pressure on employers to make sure they try and help that person. People that we support want to get back to work, they want to stay in work, and be able to pay the bills and keep a roof over their head.”

Catherine Hale, founder and director of Chronic Illness Inclusion, which advocates for people with chronic illness and energy-limiting conditions, said being able to access reasonable adjustments was critical to people staying in work. “They should be able to confidently go to their employer and have those conversations,” she said.

A spokesperson for the EHRC said: “We would recommend that employers continue to follow existing guidance when considering reasonable adjustments for disabled people and access to flexible working, based on the circumstances of individual cases.

“Given that long Covid is not among the conditions listed in the Equality Act as ones which are automatically a disability, such as cancer, HIV and multiple sclerosis, we cannot say that all cases will fall under the definition of disability.

“This does not affect whether ‘long Covid’ might amount to a disability for any particular individual. This will be determined by the employment tribunal or court considering any claim of disability discrimination.”

However, Arkwright said asking someone suffering from Covid-associated fatigue to take their employer to a tribunal if they felt they’d been discriminated against was unreasonable. “The TUC is asking for the government to automatically treat long Covid as a disability so that people wouldn’t have to go through this process,” she said.