Are you feeling lonely this Christmas?
Loneliness is a modifiable social determinant of health. It is associated with poorer health outcomes and therefore needs to be identified and managed as part of the holistic management of MS.
Case study
I am 54 years old and have progressive MS. I am divorced with a grown-up son who is 32 years old and lives with his partner in the North of England. I am medically retired and live alone in a small bungalow in a rural village in Essex. I am disabled and need a stick to walk indoors. I use a wheelchair and/or scooter for outdoor mobility. I rarely go out because of issues with my bladder. I had planned to travel to London to spend the Christmas break with my sister and her family. These plans have now been cancelled. I will therefore be spending Christmas alone. I don’t enjoy Christmas as it reminds me of a time before I had MS, before my divorce, of a time when I had a successful career as a lawyer, a lovely home and a fulfilling family life. I am dreading waking up this Saturday alone.
Reflections
This person’s story, although relatively uncommon, is sadly a familiar one. Did you know that 3 out of 5 people with MS (pwMS) self-report being lonely?
As you know 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 in personal relationships, depression, anxiety, cognitive impairment, fatigue and loss of quality of life. As a result of these factors, pwMS are at a high risk of becoming socially isolated and lonely.
Several 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 surprising other correlates of loneliness included depression, cognitive fatigue (#ThinkCognition), psychosocial fatigue and poor quality of life. Loneliness is a modifiable social determinant of health. It is associated with poorer health outcomes and therefore needs to be identified and managed as part of the holistic management of MS.
What can we do about it? NHS link workers and social prescribing are some of the tools to try and tackle this problem. In the past, we tried to get funding to set up our own programme, which we provisionally called ‘Teaching people with MS how to Fish’. The choice of title was based on the teachings of Lao Tzu, 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”. Unfortunately, our grants were not funded. Saying this we know that simply connecting with people and running programmes for pwMS to connect with each other increases social capital, i.e. the size of their social network, which improves health outcomes. This is why we have Heather Mah, a social scientist, doing a PhD in our group to study this aspect of our public engagement programme.
Omicron can’t cancel Christmas. Although the celebration of Christmas is being downsized and for some, it is being or put on hold, life and living with MS goes on. I would urge you to reflect on Christmas and what it means if you are a Christian and to delay the need for celebration to a time when it is more appropriate and the mood of the nation less sombre. The epidemic of loneliness that COVID-19 has caused needs our collective attention.
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 who 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.
If you know someone who is alone this Christmas can you please take some time-out on Christmas day to give them a call and make sure they are aware that someone cares for them?
Do you have any other suggestions to help the many people who are alone this Christmas? Please let us know.
I hope you are all holding up and I want to use this opportunity to wish you Merry Christmas or happy holidays.
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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 advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
I have a music group on Facebook where people with MS share their favorite music. We also ensure that someone is always present during the holidays so that people who feel alone or alone can enjoy the company and good music
https://www.facebook.com/groups/2551121284902261
Actually I'll write a useful comment as well as the self-pitying one I did below!
One thing I've found that has really helped me combat loneliness is volunteering.
This morning before work I volunteered packing fruit and veg boxes for a local food co-op. We buy produce from a wholesaler and and sell it for £10 a box - £1 of which goes towards "solidarity boxes" for people in our very mixed London community who cannot afford fresh fruit and veg.
On Saturday I will run my local parkrun. The following Saturday I will volunteer there.
On Wednesday and Thursday next week I am taking leave from work and volunteering at a vaccination centre.
I also volunteer a lot with GoodGym. Mostly doing group runs to a community project but there are also one-off "missions" to go and help an isolated older person with something, like hanging curtains or moving furniture. Often this is to help get people back from hospital - eg making space for a hospital bed. Other people do a weekly run to an isolated older person. It turns out these runs are really beneficial for the runner too. In London it can be easy even for young, healthy people to become isolated and lonely.
Volunteering has basically become the centre of my social life and volunteering for GoodGym in particular has been a lifeline. Because it's all local people I know that if I really need help there are so many people I can call on. A consultant friend who got sick in the first wave was able to call on me to go to the shops for her (and raid my freezer for healthy meals), and I was able to take care packages to another friend who was shielding. I know they'd do the same for me!