IMAGINE if the frustration you’re currently living with because of coronavirus became your new normal . . . You’re unable to meet a friend for coffee, go to your favourite restaurant or travel on holiday. Your education or employment becomes uncertain, and you live your life on permanent lockdown.
This is what every day is like for many of the 250,000 adults, children and young people in the UK living with the serious neurological condition, Myalgic Encephalomyelitis (M.E.) – making them experts by experience when it comes to living with uncertainty and isolation.
Daisy Chinn, 19, from Portishead, Bristol, became ill after a Year 6 camping trip and was diagnosed a week before her 11th birthday.
“I was very active. I was on my school’s football, netball and cricket team, I performed with the speech and drama club, I was learning violin and took singing lessons. I always had something physical to do! I loved playing sports and acting with my friends. This side of my life was the biggest change. I’ve gone from a very active social girl to one that couldn’t lift my head up in bed.
“My message to those who haven’t experienced such isolation is that it is difficult and we sympathise. Take this time to take up different hobbies like reading, reflecting and being grateful for all the times you’ve been able to do whatever you please.
“If one thing is to come of this, I hope that people find a new respect and a new understanding of what it truly is like being isolated in this way. After all of this is over, I hope they remember the way they felt and have new sympathy for those who after lockdown is lifted will remain in such isolation.”
Daisy is one of three people living with M.E. who have shared their insight and experience in a new short film, working with UK charity Action for M.E.
Also featured is Naomi Gilchrist, 26, from Scartho, Grimsby. Naomi is severely affected by M.E. and has been too unwell to leave her house a few years now.
“Being inside is pretty normal for me. I think the hardest this from the lockdown is how it’s more difficult to get deliveries, which I’ve always relied upon. Before lockdown, people used to say to me how they would love to be able to stay home all day. Now people hate the fact that they too have to stay in the house. For most it’s just a temporary measure, but for people like myself, isolation from the world isn’t temporary, and many of us don’t know when it will end.
“A lot of the activities people are doing during the lockdown aren’t an option for people like me; we don’t have the energy to do a lot of those things as we are more restricted because of our health.”
Naomi started to become unwell in 2012 but it wasn’t until 2017 that she got her diagnosis. She was studying an undergraduate masters in nursing and, like Daisy, very active. Now just getting out of bed and downstairs is a challenge.
“I feel trapped inside my body. I have no control over it. Just after the lockdown came into place, I was discharged from a rehab ward where I’d been for just over five months. I used to check in with my GP at least once a month and see other specialists, but now most of my support is gone and I am struggling to manage both my health and day-to-day tasks.”
Naomi advises people who are healthy during lockdown not to take their good health for granted, and to use this time to try new things.
“Don’t be afraid to try something, and then feel disheartened if it doesn’t work out. Use this time to tap into who you are – and everybody is different.”
Simon Everitt, 56, from Wadhurst, East Sussex, is more mildly affected by M.E., but still feels the impact on his everyday life.
“I have to say I am fortunate, I have mild to moderate M.E. so I’m still able to perform some self-care, and function. But I still have to be careful with my energy levels, and I have to be careful about what I plan to do.”
Simon, who worked in IT before he became ill, is actively involved in his local M.E. support group, and has taken a lead in moving group meetings online, so people can still support each other.
“A lot of the skills and disciplines that I’ve learnt in the last three years are particularly applicable to dealing with lockdown. Not just the discipline of managing energy levels, but also acceptance that you get things wrong, and the importance of standing back, and going: ‘Well if I don’t do this as well as I can do, and I perhaps don’t do it right now, and I do it tomorrow morning, does that really matter?’
“The one piece of advice I would give is: try and find a small piece of joy, every day. Find a little packet of energy, a little space in time, to do something that’s going to make you smile, and that certainly helps me.”
Simon, Daisy and Naomi were filmed at home by Ben Sherriff at Spellbinder, working pro bono with Action for M.E. as part of its M.E. Awareness Month campaign.
Sonya Chowdhury, Chief Executive, Action for M.E., says: “M.E. is a serious debilitating illness that dramatically alters the lives of those it touches, sometimes forever. In order to cope with the challenges it throw at them, people like Simon, Daisy and Naomi have become experts at planning and self-care – important for all of us right now – as well as taking each day as it comes.
“By sharing their stories and advice, we are reminding the world that people with chronic conditions like M.E. have much to offer. Their expertise by experience is something we should really value.”
Anyone affected by M.E. who would like information or support about the illness, help sourcing practical local assistance or finding peer-support, or just to talk to someone who understands, can contact Action for M.E. on email@example.com or call 0117 927 9551.
You can see the film at https://www.youtube.com/watch?v=dwRm6souspo
- M.E. affects an estimated 250,000 people in the UK, including around 20,000 in Scotland, and around 35 million people worldwide.
- One in four people with M.E. is so severely affectedthat they remain house and/or bed-bound, unable even to tolerate being touched by their loved ones.
- Adults with M.E. are six times more likelyto die by suicide than the general population.
- M.E. is the most common cause of health-related long-term school absenceand has a significant impact on children’s ability to socialise and perform at school.
- M.E. cost the UK economy at least £3.3 billion each year; this figure accounts for healthcare costs, disability-related welfare payments, productivity losses and unpaid informal care.
- Yet research funding into the condition represents less than 1%of all active grants given by UK mainstream funding agencies.
- Action for M.E. is supporting a funding application by the M.E./CFS Biomedical Partnershipin early 2020 for what will be the world’s largest genetic study into M.E.