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.
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
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!
I’m divorced with grown up children and live alone. I feel lonely at times too. A few years ago I decided to start a book group and I’ve made several friends through that. We also hold online meetings which has been a huge help during lockdown. But Christmas can cause a special kind of loneliness - memories of times past when things were different and feelings of loss can emerge again. Take care everyone
Merry Christmas, Professor Giovannoni! I have MS, at EDSS of about 6.5. I am retired (50 y/o), and am blessed to have a fantastic wife who makes an excellent income. I don't get out much, but I LIVE for my Friday night, when my wife let's me go out to my local bar and interact with people like a regular person. My MS doesn't hinder my ability to talk, sit, drink, and laugh with different folks in the community. Having MS prepared me for the social isolation of the lockdowns at the start of the pandemic (I live in Southern California). I can only imagine the harm done to people's mental health that lived in places with strict lockdowns (LA, NYC, etc). 100,000 overdose deaths in one year here in the States. Mental, societal, developmental health has been harmed in ways we can't possibly imagine and will only be known years down the road.
I wanted to reach out to say that there has been a lot of support for me in Essex through MS-UK and Overcoming MS charities. Lots of opportunities to meet virtually and occasionally in-person too. Christmas is such a tough time and I personally find it difficult too.
I do hope the new year brings new opportunities for you.
I was due to spend Christmas at a friend's, but after learning her next guest is arriving a few days early and is unvaccinated, I will no longer go. We are going to a restaurant for lunch but the whole stress of her inviting this woman then waiting until two days ago to tell me I was expected to spend Christmas with someone who doesn't care about other people (even her own father, who has cancer - she came over early from staying with her parents in Germany to escape Germany's new restrictions on movement for unvaccinated people) enough to get vaccinated has given it a sour note. My family are unreachable in NZ. I tried to talk to them the other day but my mum is looking after my niece and nephew and they are at an age where they think it's fun to exacerbate aunty Sarah's migraine by constantly turning the phone upside down. There is no meaningful conversation to be had in those circumstances.
There was a worse Christmas once. My dad was in hospital with cancer, my brother got food poisoning at his work Christmas BBQ and couldn't visit Dad, my flight to see a friend in Barcelona was cancelled due to Gatwick flooding, and I was in the middle of my second relapse and couldn't see out of my right eye. I came home to an empty flat as my flatmates had all gone home, and an empty fridge as I was not expecting to be there. It was years before my diagnosis and I couldn't tell my mum I might have MS as she had enough to worry about what with all the denial about my dad dying. I don't think I'll ever feel quite that lonely again.
Dec 28, 2021·edited Dec 28, 2021Liked by Gavin Giovannoni
You are most welcome, most members have MS, but we also have members with Alzheimer's, for example. Officially it is a Dutch group, but don't let that put you off, everyone is welcome to share their favorite music with us
The mental anguish is horrible. I live in Florida and it has gotten to be horrible here., We have a Governor who tells us to ignore local officials' mandates and rules trying to stem the spread by telling people to wear masks, then won't allow people like me (with MS) to get vaccinated until late this summer. I have been isolated since March 17, 2020. except necessary medical appts like lab work and MRIs, I go no where. I walk to my mailbox and back and that's it.. I live alone, am terribly depressed (have MDD since 1987), have developed anxiety and honestly, I don't see this pandemic ending in my lifetime. I will be 64 the first week of January. With all of the Trump followers out there that truly believe this is a hoax or is not as bad as the government is making it out to be and refuse to be vaccinated or take mitigation measures, the virus will continue to spread and mutate. It's sadly a scientific fact, unfortunately they are the ones that will continue to be severely ill and putting the rest of the world in danger.
I read this v interesting piece a few days ago in the New York Times about the way Frome, Somerset has been fighting isolation thanks to an experiment started eight years ago by local GP, Dr. Helen Kingston. At the heart is 1,140 voluntary “community connectors.” The result - reduced emergency hospital admissions and patients with less non-medical stresses and crisises. This model being studied around the world. Wonder if something like this could be adapted for people with MS?
Thanks for the reference, Rachel. Yes, I think this kind initiative is exactly what is needed globally. I don't think it should be MS specific but part of a broader sweep to help all people who are lonely in general. It is clear from the impact of this pandemic is that humans are much more dependent on social interactions than we realise. #ThinkSocial
Christmas is a time which exacerbates loneliness for anyone who is grieving (a person or a past way of life) or finds themselves on their own for whatever reason. There are so many people who are lonely one way or another that Christmas does offer an opportunity to reach out to someone who might be just as lonely as you are ... or perhaps feeling even more so. Finding a way to get together with someone else in same boat, perhaps by sharing a meal together or watching a film seems like a good way of overcoming the difficulty. It could be an elderly relative or someone nearby who lives on their own and doesn't have family. In the longer run, I agree with Sarah, below, that volunteering has the advantage of taking you out of yourself and broadening your social circle.
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
I just sent a request to join. This sounds like a wonderful group!
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!
ps there are loads of things you can do from home over the phone or online too!
I’m divorced with grown up children and live alone. I feel lonely at times too. A few years ago I decided to start a book group and I’ve made several friends through that. We also hold online meetings which has been a huge help during lockdown. But Christmas can cause a special kind of loneliness - memories of times past when things were different and feelings of loss can emerge again. Take care everyone
Very thoughtful post. Merry Christmas to you Professor and everyone on this site
Merry Christmas, Professor Giovannoni! I have MS, at EDSS of about 6.5. I am retired (50 y/o), and am blessed to have a fantastic wife who makes an excellent income. I don't get out much, but I LIVE for my Friday night, when my wife let's me go out to my local bar and interact with people like a regular person. My MS doesn't hinder my ability to talk, sit, drink, and laugh with different folks in the community. Having MS prepared me for the social isolation of the lockdowns at the start of the pandemic (I live in Southern California). I can only imagine the harm done to people's mental health that lived in places with strict lockdowns (LA, NYC, etc). 100,000 overdose deaths in one year here in the States. Mental, societal, developmental health has been harmed in ways we can't possibly imagine and will only be known years down the road.
I wanted to reach out to say that there has been a lot of support for me in Essex through MS-UK and Overcoming MS charities. Lots of opportunities to meet virtually and occasionally in-person too. Christmas is such a tough time and I personally find it difficult too.
I do hope the new year brings new opportunities for you.
I was due to spend Christmas at a friend's, but after learning her next guest is arriving a few days early and is unvaccinated, I will no longer go. We are going to a restaurant for lunch but the whole stress of her inviting this woman then waiting until two days ago to tell me I was expected to spend Christmas with someone who doesn't care about other people (even her own father, who has cancer - she came over early from staying with her parents in Germany to escape Germany's new restrictions on movement for unvaccinated people) enough to get vaccinated has given it a sour note. My family are unreachable in NZ. I tried to talk to them the other day but my mum is looking after my niece and nephew and they are at an age where they think it's fun to exacerbate aunty Sarah's migraine by constantly turning the phone upside down. There is no meaningful conversation to be had in those circumstances.
There was a worse Christmas once. My dad was in hospital with cancer, my brother got food poisoning at his work Christmas BBQ and couldn't visit Dad, my flight to see a friend in Barcelona was cancelled due to Gatwick flooding, and I was in the middle of my second relapse and couldn't see out of my right eye. I came home to an empty flat as my flatmates had all gone home, and an empty fridge as I was not expecting to be there. It was years before my diagnosis and I couldn't tell my mum I might have MS as she had enough to worry about what with all the denial about my dad dying. I don't think I'll ever feel quite that lonely again.
:'(
always alone...scared
Don't be afraid, if you like music, you are welcome to join my music group, where you meet fellow sufferers and can share your favorite music. https://www.facebook.com/groups/2551121284902261
Sounds interesting. I will sign up right now to join the group
Is there anything we can do to help?
Thank you for your thoughtful post Prof G.
I wish the person with MS well and encourage them to reach out to MS-UK in Essex as they are a wonderful charity.
Sending best wishes to you all for a safe and healthy Christmas and New Year. 🎅❄☃️🎄
Thank you again for this important mail and topic.
Merry Christmas! 🌲
You are most welcome, most members have MS, but we also have members with Alzheimer's, for example. Officially it is a Dutch group, but don't let that put you off, everyone is welcome to share their favorite music with us
The mental anguish is horrible. I live in Florida and it has gotten to be horrible here., We have a Governor who tells us to ignore local officials' mandates and rules trying to stem the spread by telling people to wear masks, then won't allow people like me (with MS) to get vaccinated until late this summer. I have been isolated since March 17, 2020. except necessary medical appts like lab work and MRIs, I go no where. I walk to my mailbox and back and that's it.. I live alone, am terribly depressed (have MDD since 1987), have developed anxiety and honestly, I don't see this pandemic ending in my lifetime. I will be 64 the first week of January. With all of the Trump followers out there that truly believe this is a hoax or is not as bad as the government is making it out to be and refuse to be vaccinated or take mitigation measures, the virus will continue to spread and mutate. It's sadly a scientific fact, unfortunately they are the ones that will continue to be severely ill and putting the rest of the world in danger.
I read this v interesting piece a few days ago in the New York Times about the way Frome, Somerset has been fighting isolation thanks to an experiment started eight years ago by local GP, Dr. Helen Kingston. At the heart is 1,140 voluntary “community connectors.” The result - reduced emergency hospital admissions and patients with less non-medical stresses and crisises. This model being studied around the world. Wonder if something like this could be adapted for people with MS?
https://www.nytimes.com/2021/12/15/business/england-city-fights-isolation.html
Thanks for the reference, Rachel. Yes, I think this kind initiative is exactly what is needed globally. I don't think it should be MS specific but part of a broader sweep to help all people who are lonely in general. It is clear from the impact of this pandemic is that humans are much more dependent on social interactions than we realise. #ThinkSocial
Christmas is a time which exacerbates loneliness for anyone who is grieving (a person or a past way of life) or finds themselves on their own for whatever reason. There are so many people who are lonely one way or another that Christmas does offer an opportunity to reach out to someone who might be just as lonely as you are ... or perhaps feeling even more so. Finding a way to get together with someone else in same boat, perhaps by sharing a meal together or watching a film seems like a good way of overcoming the difficulty. It could be an elderly relative or someone nearby who lives on their own and doesn't have family. In the longer run, I agree with Sarah, below, that volunteering has the advantage of taking you out of yourself and broadening your social circle.