24th December 2025, Byfield, Northamptonshire
Mary lives alone. Her husband has long departed; he filed for a divorce and left the marital home more than a decade ago when Mary had to stop working. Mary has two daughters who have both fledged. Charlotte, her oldest, works in London and is living with her boyfriend. Elizabeth, the youngest, is currently living and working in Sydney, Australia, after finishing University. Charlotte, who calls Mary every day, would now only be visiting on the 28th of December. She informed her mother weeks ago that she would be spending Christmas with her boyfriend’s family in Dorset this year. Mary’s parents are both deceased, and her brother and sister live in Scotland. As a result, Mary would be spending Christmas alone again this year - almost alone.
Carolotta, her Italian carer, will visit twice on Christmas Day. The first visit will start at 8.30 am on Christmas morning to help Mary get out of bed, empty her catheter bag, and wash and dress her. Carolotta will then push Mary in her wheelchair from the bathroom to the kitchen for breakfast. Breakfast would likely be a bowl of Quaker Oats So Simple from a sachet, mixed with milk and heated in the microwave oven.
After breakfast, Mary will take her medications under Carolotta’s watchful eye, who will then push Mary in her wheelchair into the lounge and help transfer her into her reclining chair in front of the TV. Mary spends most of the day watching daytime TV or listening to the radio. She frequently complains about the poor quality of TV on the BBC, claiming that there are too many repeats. Mary had to recently cancel her Netflix subscription because she couldn’t afford it on her meagre living allowance. Maybe one of her daughters will renew the subscription as a Christmas present.
Mary has persistent double vision from a neurological episode that happened more than a decade ago. If she watches TV, she has to cover one eye with a frosted lens using her reading glasses. She finds this tiring, and now prefers listening to the radio. She finds reading difficult, but has adapted by listening to audiobooks. Saying that she finds it difficult to find and download free audiobooks onto her mobile phone. Charlotte helps whenever she visits. As Charlotte hasn’t been to see her for several months, Mary has run out of audiobooks.
Carlotta brought her daughter to visit last Saturday to decorate Mary’s artificial Christmas tree. Sadly, there are no presents under the tree this year. Mary is not expecting any family or friends this Christmas. On the table next to the Christmas tree are six Christmas cards. In the past, when her daughters were young, and Mary was still working as a teacher in the local primary school, they used to get over 100 cards every Christmas. All Mary’s pupils and colleagues would give her a card. Mary recalls how she used to string the cards above the fireplace in multiple rows. A boast about how socially connected she was by the sheer volume she had on display. How times have changed.
Mary is only just able transfer herself back into the wheelchair from her reclining chair using a monkey rope attached to the wall. She only does this if she wants to have lunch or go to the bathroom. As she finds it exhausting getting up by herself, she tends to miss lunch. Her kitchen has been adapted so she can access the fridge and countertops from her wheelchair. These days, when she eats, she mainly eats ready meals warmed in the microwave. Carolotta kindly fills a flask with tea each morning and puts it on the table next to Mary. This allows Mary to have warm tea without risking using the kettle and pouring boiling water over herself. Mary has noticed increasing weakness in her dominant right hand, with worsening coordination and tremor. As a result, she finds the kettle too heavy to lift.
Carlotta will visit on Christmas Day at about 4.30 pm to make sure Mary has a light dinner. Carolotta will then take Mary to her bedroom, undress her and get her ready for bed. Carolotta’s evening visit will be rushed and short. She is on call for the agency she works for and has three other residents in the village to see as cover for her colleagues who have Christmas off this year. Carlotta will want to get back home to spend the evening with her family. Despite this, the rushed evening visit on Christmas Day will be slightly different to other evening visits. Carlotta will bring Mary a serving of Christmas pudding with brandy butter, the same as last year. A kind gesture that someone cares and a simple reminder that Christmas Day is special and different from the other 364 days of the year.
You have probably realised by now that Mary has MS. She was diagnosed 34 years ago. She is now in her late fifties and lives alone. She has a paraparesis with worsening hand and arm function. She is socially isolated, lonely, and vulnerable. People in her village look out for her; she is known as the woman with MS. The owner of the local Co-op delivers groceries once a week, but sadly, she has no friends or other visitors from the village. The few friends she has are mainly colleagues from when she still worked, who live some distance from her. They rarely visit, and they call her infrequently. On top of being alone, Mary is finding it increasingly difficult to make ends meet on her meagre allowance. Mary is beginning to realise that it won’t be long before she will have to move into a nursing home. May be Christmas’ are merrier in care homes - at least Mary will have company and have the luxury of eating a Christmas meal.
Some of you may recognise Mary’s predicament. Many people with MS live alone and will be lonely this Christmas. An MS Society national survey that was done several years ago showed that three out of five people with MS self-report as being lonely. This figure is staggering when you consider the fact that loneliness kills. This is why the NHS has a “Better Lives: Every Mind Matters” loneliness resource to help people who feel lonely. It covers feeling lonely, advice for loneliness, support for loneliness, and finding support.
Having MS makes loneliness worse. MS is a very stigmatising disease that, given sufficient time, at least in the pre-disease-modifying therapy era, causes most pwMS to become disabled. Associated with this disability are the well-documented complications of unemployment, the breakdown of personal relationships, depression, anxiety, cognitive impairment, fatigue, loss of quality of life and, tragically, an increased suicide risk. As a result of these factors, pwMS are at a high risk of becoming socially isolated and lonely.
Numerous studies have shown that loneliness can be explained by employment status, marital status, upper extremity function, social disability and physical disability. Mary is a typical example with all these risk factors. Not surprisingly, other correlates of loneliness included depression, cognitive fatigue, psychosocial fatigue, poor quality of life and suicidal ideation and suicide. We can only wonder if Mary has any of these other cofactors.
Loneliness is a modifiable social determinant of health and is associated with poorer health outcomes. It therefore needs to be identified and managed as part of the holistic management of MS. This is part of my marginal gains philosophy for managing MS.
“If we break down everything we can think of that goes into improving MS outcomes, and then improving it by 1%, we will get a significant increase when we put them all together.”
I suspect Mary has many modifiable factors to improve her quality of life. What can we do about it? The NHS’s “Better Lives: Every Mind Matters” resources, NHS link workers, social prescribing, and self-management are just some of the tools to tackle loneliness and social isolation. We, Barts-MS, unsuccessfully tried to secure funding to set up a programme we provisionally called ‘Teaching people with MS how to Fish’. The choice of title was based on Lao Tzu’s teachings, the Chinese philosopher and founder of Taoism, who said, “Give a man a fish, and you feed him for a day. Teach him how to fish, and you feed him for a lifetime.”
Connecting people increases their social capital, i.e. the size of their social network, which improves health outcomes. If you are spending Christmas alone, there are things you can do. If you are religious, reconnect with the true meaning of Christmas and try to attend a Church service, either in person or via TV, radio, or online. Pick up the phone and call people; friends, family or one of the many charitable organisations that provide telephone companions. Watch Christmas TV. Listen to Christmas carols. Have a Zoom lunch, dinner or drink with someone who is also alone. If you can practice mindfulness, please do. Get out if you can for exercise and fresh air. Make sure you fill your day with as many activities as you can.
I was impressed and grateful to receive an email from an MS-Selfie subscriber explaining that, during lockdown, she took part in a poetry-writing initiative started by someone with MS. The poems are about the lived experience of MS. The book is available online and will be in print shortly. The poetry project aims to help HCPs and others to understand the experiences of people living with MS. Please download the book, read it and share the link with others. These are the kinds of things pwMS and the wider community can do to build communities to counteract the curse of loneliness.
If you know someone who is alone this Christmas, please take some time out on Christmas Day to call them. Make sure they know someone cares for them and that they are not alone in the world. If you have any suggestions to help people who are alone this Christmas, please share them with us. This is the power of community, albeit a digital online community.
I hope you are all doing well and holding up under very trying global and national circumstances. I want to wish you all a Merry Christmas or Happy Holidays. The following is a poem from one of my favourite poets that reminds me of yuletide.
Stopping by Woods on a Snowy Evening
By Robert Frost
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other sound’s the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep.
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.
I sincerely hope Mary gets plenty of calls on Christmas Day. Do you?
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have any problems, please tell your healthcare professional, who can help you.
