*Pseudonyms and stock images have been used to share this Carers Week story
Jayne initially received understanding from her workplace when she first became a carer. Remote working meant she could provide support to her housebound son whilst fulfilling her employment responsibilities. Since then, there has been a drive for all staff to return to the office, and she must seek permission each time she needs to work remotely. This lack of autonomy adds unnecessary pressure and makes it harder to meet her son’s essential care needs. Greater employer flexibility, trust, and recognition of the realities of caring for someone with a fluctuating chronic illness would enable her to balance her responsibilities without constantly having to justify herself.
Jayne* works for the NHS and is carer to her 22 year old adult son, James*, who has moderate to severe ME/CFS.
My son, James, put all his focus and energy into achieving his goals. At University, studying Sports Science, he threw himself into every part of student life, especially rugby. He trained several times a week, balanced this with his studies, and even worked part-time in a restaurant. He took some time to recover from glandular fever, and then appendicitis, and when he contracted Covid the first time, we thought it would be another short setback. When he caught it for a second and third time, his symptoms got progressively worse. Still, he pushed on, determined to keep up with everything.
He started falling asleep in lectures, something completely out of character for him. Getting out of bed became a struggle. On the rugby pitch, he was lacking energy. We knew something was wrong, and in 2024 he received a diagnosis of ME/CFS.Today my 22-year-old son is housebound with moderate to severe ME/CFS. He moves between his bed and the sofa, but that’s the extent of his world now. Although he manages self-care, even taking a shower can completely wipe him out, sometimes for an entire day. He pays a high cost for even tiny amounts of social interaction. When family members visit, I act as a gatekeeper, moderating conversations and protecting him from well-intentioned chat that could exhaust him. It’s hard to convey that something as simple as talking can drain his limited energy.
His previous roles as a rugby player, part-time worker and student have all been stripped away, along with his social relationships. The one blessing is that his university has been exceptional. They were proactive in setting up a student profile outlining his condition and how it affects him, and have put in place reasonable adjustments so he can meet coursework deadlines. Although he can’t attend lectures, they have enabled him to continue his course remotely. He studies in tiny pockets of time each day.Alongside my full-time NHS role, I am also James’s carer. When he was first diagnosed, I was consumed with anxiety. I wanted to “bubble” him, to protect him from any unnecessary physical or social exertion, and to shield him from further infections. Even though my NHS role isn’t patient-facing, I was concerned that I might bring illness home. In the early stages, my managers were wonderfully understanding, and I could work from home, but there is now an expectation to return to the workplace – even though my caring responsibilities haven’t changed.
Caring for James requires immense organisation and planning, and it is particularly tricky to ensure his needs are met when I am at work. I prepare all his meals in advance so he only has to heat them up, but even walking to the microwave can be a challenge. I make sure he always has water nearby because simply getting up to fetch a drink is a level of exertion he cannot afford.
There are practical demands as a carer, but the emotional ones are greater. When I work from home, the companionship I provide is invaluable. James’s ability to engage in conversations is limited, and I try to avoid contributing to any sensory overload, but simply having someone present helps ease the isolation. Most people don’t understand how profoundly isolating ME/CFS is. It’s hard to explain to family, friends, and work colleagues that the more I am available to support him, doing tasks that may outwardly appear manageable, the better he can manage his symptoms and avoid his condition getting worse.
I’m aware that people who see snapshots of James can easily misunderstand the complexities of an invisible illness that is deeply misunderstood.
Two years on from his diagnosis, I feel I now have to justify any request to work from home, even though my role doesn’t require me to be office-based. I tend to wait until James is having a flare-up of symptoms before requesting remote working, which is a reactive response rather than being proactive and preventative. The nuance of a fluctuating condition like ME/CFS is incredibly hard to communicate. Although my colleagues are skilled and experienced health professionals, there is limited knowledge of ME/CFS in my workplace, and to many, the illness has no context or meaning. There is a carers’ network in the trust, which managers have signposted me to. However, I haven’t felt that quarterly support meetings would have much impact on my day-to-day life, or offer anything that online ME/CFS support groups can’t provide.
I am grateful for the support I received from senior colleagues to deliver a presentation on ME/CFS, which helped raise awareness of the condition and tapped into some partnership working with the long Covid team. However, as the carer of an adult child with a complex illness, I wish I had the autonomy to choose when to work from home so I could respond to James’s day-to-day needs without seeking permission. Greater flexibility, trust, and recognition of the realities of caring for someone with a fluctuating chronic illness would enable me to balance my responsibilities without constantly having to justify myself.
Being a carer to an adult child brings its own grief, and a mourning for the life they were supposed to have. The emotional labour is immense. For healthcare workers in situations like mine, we carry emotional weight professionally, and at home. It can feel like a double burden, and one that isn’t addressed.
Caring has also affected my social and personal life. In the early days, I avoided any unnecessary socialising outside the house, and strictly limited visitors to the home. Now, I have resumed a more normal pattern of socialising, which helps. I use masks on public transport during winter months, and on the couple of occasions I have contracted a virus, James remains in his room to minimise the risk I pose to him. It’s difficult for others to know how to support carers, but emotional support means everything, and receiving texts or calls is a welcome reminder that we are held in someone’s thoughts.
Both my son’s life and my own have been turned upside down by ME/CFS. I feel the challenges faced by us and others living with ME are largely invisible to the rest of the world. I would like to see change; having the autonomy to work flexibly from home matters and acknowledges the reality of caring for someone with a long-term chronic health condition. For carers, who also work in the healthcare sector, this would also reduce unnecessary pressure, prevent burnout, and improve the quality of both our work and personal lives.
