Are you lonesome this Christmas?
Did you know three out of five people with MS self-report as being lonely? What can we do about this, this Christmas?
Every year my wonderful MS nurse and I put together a list of our patients with MS who we think may be socially isolated and/or vulnerable. I then call them on Christmas day to see if they are okay and wish them a Merry Christmas. It is the least I can do and is walking my talk.
A few years ago, the MS Society did a national survey that showed three out of five people with MS (pwMS) self-report as being lonely. This figure is quite staggering when you consider the fact that loneliness kills. This is why the NHS has launched its “Better Lives: every mind matters” loneliness resource to help people who feel lonely.
The “Better Lives: every mind matters” covers:
In addition, the UK Government has a “loneliness strategy” and a “Minister for loneliness” in response to the problem of loneliness in the UK. Having MS makes loneliness worse. MS is a very stigmatizing disease that, given sufficient time, at least in the pre-disease-modifying therapy era, caused 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 (#ThinkHand), social disability (#ThinkSocial) and physical disability (#ThinkExercise). Not surprisingly, other correlates of loneliness included depression, cognitive fatigue (#ThinkCognition), psychosocial fatigue, poor quality of life and suicide.
I am convinced that loneliness is a modifiable social determinant of health, which is associated with poorer health outcomes and therefore needs to be identified and managed as part of the holistic management of MS. This is part of my marginal gains philosophy of 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.”
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 tools to tackle loneliness and social isolation. We unsuccessfully tried to get funding to set up a programme, which we provisionally called ‘Teaching people with MS how to Fish’. The title choice 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”.
Simply connecting people increases their social capital, i.e. the size of their social network, which improves health outcomes. This is why we are doing studies in our centre to see if our public engagement and our social outreach programmes are achieving this at a meaningful scale. We hope that generating evidence will allow us to get funding to make this a routine part of our MS service.
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 and get to a Church service, either in person or one of the TV, radio or online Christmas services. Pick up the phone and call people; friends, family or one of the many charitable organizations that provide telephone companions. Watch Christmas TV. Listen to Christmas carols. Have a zoom lunch, dinner or drink with someone who is also alone. Connect! 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.
And if you know someone alone this Christmas, can you please take some time out on Christmas day to call them and make sure they know someone cares for them?
If you have any other suggestions to help people alone this Christmas, please share them with us. This is the power of a community, albeit a digital community.
I hope you are all doing well and holding up under very trying circumstances. I want to use this opportunity to wish you all a Merry Christmas or happy holidays. One of my favourite songs at Christmas is Hallelujah, by Leonard Cohen. I am unsure if I prefer the Leonard Cohen version or one of the cover versions. Which do you prefer?
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.
I would be absolutely touched if my neuro checked in on me over Christmas.
We live in an age where normal human contact appears to be ebbing away. You never know - you might just save someone's life by making that call.
Thank you so much for all you do. And Merry Christmas.
I'll be lonely in a house full of people. Living with a husband that's psychologically abusive, children home from uni that don't want to be with him so spend all their time in their rooms.