Bradford resident Darren Parkinson has shared his journey living with long Covid in a new video produced by The Guardian. A community nurse and town councillor, Darren was diagnosed with long Covid over three years ago after what initially appeared to be a mild Covid infection. In 2023, his condition worsened, leaving him debilitated by severe fatigue, unable to work, and largely confined to his home.
In the video, Darren speaks candidly about the difficulties he has engaging in ordinary family life as a result of the severe fatigue he experiences every day. Simple tasks, such as household chores or short conversations with loved ones, leave him utterly drained. After even minor activities, Darren often needs extended periods of rest in a quiet room.
Living with long Covid
Doing simple everyday household tasks causes me to be incredibly fatigued and I am now reliant on help from family and friends to do the basics like cooking and cleaning.
“Living with long Covid has had a devastating effect on my life and that of my family”, Darren shares. “I am mostly housebound and spend much of my day lying on my bed, utterly exhausted just by being alive. Doing simple everyday household tasks causes me to be incredibly fatigued and I am now reliant on help from family and friends to do the basics like cooking and cleaning.
“I am also not able to do things I love such as meeting friends, enjoying the outdoors, playing guitar in my band or volunteering in my community.”
Darren, once an avid cyclist and outdoor enthusiast, can no longer walk more than a few steps or take part in activities he once enjoyed. His bike, a symbol of his previous lifestyle, now sits unused in the shed. “It is devastating to me that I can no longer take part in outdoor family activities like going on walks, family bike rides or out for day trips. My children are missing out on important family time and I worry about the impact that my illness is having on them”, he says.
The emotional and financial toll
Unable to work, Darren feared losing his role as a community learning disability nurse for the NHS – a position he held for nearly 20 years and found deeply fulfilling. After filming the video, those fears were realised when he was dismissed on ill-health grounds.
“I’m absolutely devastated,” Darren says. “I loved working with disabled children and their families, making a real difference in their lives. Losing my job has not only affected our family finances but has left me feeling isolated and without a sense of purpose.”
Darren also stepped down as a town councillor for Shipley Town Council, a decision he found deeply difficult. “I’m proud of what I achieved as a town councillor since 2020, but this disease has made it impossible for me to represent my constituents effectively. Resigning was my only option.”
A call for action
Darren’s story is far from unique. A 2023 TUC survey revealed that one in seven respondents lost their jobs due to long Covid. Despite millions of people suffering from this condition in the UK, there are no proven treatments, and the disease remains poorly understood.
“The government must commit to properly fund research to find treatments for long Covid”, Darren urges. “This must be done urgently for the two million people in the UK whose lives continue to be disrupted by this dreadful disease.”
Advocacy groups echo Darren’s concerns. Long Covid Advocacy, a non-profit social enterprise who advocate for people with long Covid, criticised the government’s lack of commitment to tackling the disease:
“The UK committed to two funding rounds for long Covid, investing £38 million. Yet, five years after the pandemic began we are no closer to any test that can confirm long Covid, nor any effective treatment. This was a profound missed opportunity, with the majority of studies not investigating root causes.
“The Labour government, with the ‘Get Britain Working’ white paper, is not addressing the elephant in the room; the two million people with long Covid. We need a determined and compassionate effort to prioritise effective research that will restore citizen’s health to enable them to participate fully in society.”
The Long Covid Support charity said:
“We are concerned about the lack of ringfenced funding for long Covid research and treatment. Long Covid and Covid mitigations are noticeable by their absence in the government’s Get Britain Working White Paper. UK employment is not returning to pre-Covid levels while Covid continues to damage UK workers health and while public health mitigations are not in place to stop it.
“Workers developing long Covid, often from workplace infections, are facing disability discrimination, lack of support and often loss of jobs as a result. Young people, often infected in places of education, are entering their working lives with long Covid. This is unsustainable.”
Hope for the future
Despite his struggles, Darren remains hopeful that advances in medical research will lead to a better understanding of long Covid and effective treatments. However, he emphasises the urgent need for greater investment in clinical trials and public health measures to prevent the disease’s continued spread.
Darren’s story sheds light on the ongoing crisis faced by millions living with long Covid, underscoring the urgent need for compassion, support, and decisive action to address this widespread and debilitating condition.
