In March 2020, when the pandemic was in its early stages, 32-year-old Lucy O’Keeffe contracted covid and felt its fullest effects.
The British Sign Language interpreter was unable to get out of bed for seven weeks, affected by symptoms that included a dry cough, shallow breathing and body aches that affected her entire body.
At a time when younger people were also succumbing to the virus, O’Keeffe feared that being admitted to hospital might mean she would not return.
Two years later, he is still recovering from the effects of the virus, with what is now known as prolonged Covid.
“I think a lot of people think that prolonged covid-19 is just a continuation of some of the symptoms of covid,” he tells HuffPost UK. “But for me, it’s been like a completely drastic change.”
Despite an estimated 1.5 million people (2.4% of the population) experiencing self-reported prolonged covid (symptoms persisting for more than four weeks after first suspected coronavirus infection), the condition is often leaves out of conversations during the pandemic.
But people like O’Keeffe have seen their lives hijacked by the condition. He now has trouble walking unassisted: he uses a mobility scooter for larger trips and a cane for shorter trips. He has extreme exhaustion and shortness of breath and has trouble putting on his socks.
As a result, O’Keeffe had to move back in with her mother, who helps her with basic chores like cooking, cleaning and washing her hair.
Your working hours and workload are also drastically reduced. Previously, she traveled around London helping to advocate for deaf people through interpretation. Now, she struggles to maintain the focus needed to do this and instead works from home and translates emails, as it requires less intense focus and concentration.
Unfortunately, she also came back with Covid, experiencing the now common symptoms including sore throat, cough, fever and body aches. And the whole experience has been triggering for her.
O’Keeffe, who has asthma, explains that for a long time Covid has significantly changed his energy output, which has had a ripple effect on his social life.
“I was never classified as disabled. I was completely independent. I used to work, I lived alone, whereas now, for example, if I want to take a shower, that’s my main activity of the day,” she says.
“I’m so tired after a shower and that’s it, that’s my wasted energy. And even to take a shower I have to sit on what is called a bath bench or a shower chair, because I can’t get up to take a shower. Gone are the days of jumping in the shower and then running out. It’s a huge life changer and completely debilitating.”
Even an hour of seeing her friends can leave her exhausted and in bed the next day.
As someone with asthma, O’Keeffe felt somewhat used to a respiratory condition, but was drawn to people who otherwise had no health complications and found themselves tied down by a long period of covid.
In an effort to find and share some solidarity, she began speaking out about her condition on Instagram and has also joined forces with the charity Asthma + Lung UK to raise awareness.
O’Keeffe believes there hasn’t been enough support or research into causes and treatments and hopes things will change in the near future. But, as restrictions are lifted and things continue to return to the way they were before, O’Keeffe laments claims of a “post-pandemic” world.
“The comments are completely naive,” he adds. “And they are terrifying. I get excited when people say ‘oh it’s just a cold’ but you have no idea how it feels in the long run.
“And doctors don’t know in the long term what impact that will have on your body.”
So what should someone who is not very aware of the condition do to help those who have it?
O’Keeffe says: “First of all, I feel like the government could have done a little bit more to protect society and the vulnerable, like just keeping masks and social distancing.
“But people can still do those things. It’s not too much to ask. Right now people think the pandemic is over and life is back to normal when it is not. There are still thousands of people who are stuck at home due to the long covid.”
Asthma + Lung UK is a UK charity that supports all people with lung problems and fights for everyone’s right to breathe. He is asking the government to invest more in lung disease research. For information and support, visit the Asthma + Lung UK website.
This article originally appeared on HuffPost UK and has been updated.