If you have any suggestions, or examples, of what can be done to tackle chronic stress in relation to social determinants of health please let us know.
Hmm how to tackle chronic stress - well the tools we can use to help are pretty well known by now - counselling, peer support, someone to talk to. Even just by talking and someone listening relieves levels of stress. Facilitate and inform of the benefits of exercise, and of mental health tools such as mindfulness and meditation (John Kabat Zinn developed a program several years ago to deal with stress for those with chronic illness). These methodologies can be taught to everyone in their early years and used by individuals in their own home and aren't expensive in themselves. Simplify our lives as much as possible in these days of intrusive, repetitive, sometimes deliberately shocking and disturbing news reports and constant bombardment from notifications on our phones (even the now familiar weather warnings can make me anxious) and encourage connection with the natural world ( benefits were felt from this during lockdowns). Education of everyone in dealing with stress and sources of stress is key.
Yes! I agree 100%, that increased stress leads to increased inflammation worsening many chronic diseases. Please read “ when the body says No” by Dr Gabor Mate. The second chapter is about MS. It is an excellent book on this very topic.
Good read as always, thank you . My Mom used to say that about my Gran - tea and toast. I know if I hadn’t prepared her meals she would have done the same and did on rare days I couldn’t for one reason or another. There’s so many virtual groups- art, fitness, why not start one for cooking? Simple meals. I mealprep -very simple, three ingredient meals. It’s really made a difference. It took some time, wasn’t what you would consider a chef! Actually, I don’t like cooking but I like eating. And on days I’m too tired to cook I just take it out of the freezer.
“…what can be done to tackle chronic stress in relation to social determinants of health”. …And I listened to the podcast to see if I understood the question. It seems there were a few subquestions within the question. I was a bit more interested in this podcast/post because it is somewhat psychological in nature (kind of up my alley). I’ll start with the specific and work to a broad answer.
What do you do with overwhelming stress in a wartime situation? Sorry to say, but the most successful will be those who are all ready most mentally agile and can fend for themselves. Put aside your MS and tend to the basics. Turn your worry to other most pressing concerns. I think for most of us, that sounds cruel but we’ll also agree, probably, there is no other way. On SNL here in the US last Saturday Night, the first comedy skit considered social media star suggestions to resolve the tragedy. Kenan Thompson played someone who had been accidentally pulled in amongst the social media experts offing stupid solutions, and said something like “I don’t know about you all, but I’d put someone up on a roof (making a gun gesture with his hand), and pop pop pop pop”. Unfortunately, that may be our real solution to this specific problem (i.e. Putin).
To get myself thru to a more functional level myself last week, so I could at least go on feeling in control and do the things I normally do without distracting myself mentally, I first submerged my head into the worst possible outcomes and learned how best to survive. I looked for commonalities from reputable websites, and set timelines for myself to take certain actions, such that if “#2” happens, I’ll do this, if “#3” happens, I’ll do that. I printed out various maps, for example, on how to get to my friend’s house with a basement, in a half hour, so I’d have several routes if I needed them. I filled 10 jugs with water, ready to grab. (On and on.) This is tuff, tuff stuff, the toughest. Nobody wants to say it (similar to “you have MS”), but at least for me, I felt less stressed, not more, after looking at the facts.
In any different scenario, wartime or other, you need a specific starting point. In this situation- my brother, who lives in NYC, assumes he will be vaporized, so he’s not making any plans. He is correct and he knows it. I will not be vaporized because of my location. So if your intention is to survive (and one should face this question head on), and your answer is “yes I want to try to survive”, then it is very helpful to know there are things you should do and not do. I’m glad I took the time to learn them. I feel much better after looking at all the facts, as terrible as they are (again, a parallel to “you have MS!”?). If my plan is to continue living, then I want my plan to be as effective as possible. (Sound like MS?) I don’t want to just “hope for the best”, pray, and see how that goes.
So to my broader answer to the question posed- In my experience helping hundreds of people in therapeutic situations (who were all “stressed”), it starts with a couple basics- do you really care, and do they want to change? First, you really have to, absolutely 100%, care and be able to communicate to them that you CAN help, and they must believe this. But this can only happen if they WANT an improved situation. You can not help those who are unable to hypothesize a better situation. Spend a lot of time working with them on these two basics, but if you can’t get a result, sooner or later you have to stop. They’ll probably give up before you do. So your initial tasks are to see if and why they are unable to understand that change is needed, and at the same time all along, be convincing them that YOU are the one (with their partnership), that can get the job done. Accomplish these two basic tasks and your success rate will dramatically improve.
There are no special quick fixes or new secret strategies that I am aware of. Putin needs to be removed, because he is not going to change.
MS causes stress directly by increasing the energy required for movement and position-holding, and by affecting cognition. An important secondary source is anxiety over the selection of MS treatments and adaptations, many of which are life-altering in themselves. Additionally, the experience of stress by pwMS varies widely according to age, sex, family/marital status, disability level, occupation, income and net worth.
These are social determinants, but it would be wrong to take a purely social-determinist approach to MS stress. Personality traits and family circumstances also play important roles.
Despite the enduring presence in marriage vows of the words “in sickness and in health … till death do us part,” some intimate partnerships are unable to survive the progression of MS disease. What at first seems a boundless source of comfort and inspiration can easily narrow into hard channels of misunderstanding that drain away patience and vitality. The constant presence of negative emotions keeps levels of destructive stress high, inhibiting frank discussion and depleting disease-fighting reserves.
When pwMS describe the heartbreak of collapsed relationships, they often report their partner’s explanation as “I’m not cut out for this,” “I didn’t sign up for this,” or “I should be doing more at this stage of my life.” Sometimes there’s no third party, which suggests that these may be deep-rooted expressions of a disturbing poverty of sentiment. It’s true that many factors external to the individual affect the strength of personal and family ties in the presence of chronic disease. Still, I’m quite sure that MS destroys relationships at all socio-economic levels, and that the stress this induces lasts long after separation is permanent.
Of course MS stress comes with a cost. Some of it is socialized in the form of additional health interventions, income support and mitigation of elevated risk to children. Perhaps when researchers and their funders consider this cost as well as all the determinants of MS health, a more holistic social approach to our affliction will appear not only desirable but indispensable.
Meanwhile, what this SHoH may be doing to people's MS and mental states is anything from a minor flare to a major relapse or progression where it wasn't before. So think how this is affecting pwMS in Ukraine. Ditto all the other terrible 21st century conflicts. If pwMS can reach the west, that's not everyone if they have a high EDSS they can be helped. Like the teams of Drs and medics that have gone out to treat 21 children with cancer the MS community and MS HCPs must do what they can to get them treatment back there. In what form I can't say as a layperson, but the treatments we have now as compared with the 20th century are various. Clearly infusions and stem cell treatments are likely to be impractical, but there are other effective treatments which may not be a match for what they were on. Less ambitious are the education that treat symptoms which are not disease modifying. Pragmatism is called for. We who are or were in the caring professions tend toward idealism but it isn't as good a fit for the current circumstances. Do what you can not what you would like to do.
I think the stress is more like distress. Distress sounds a bit of an old fashioned notion now we know more about wellbeing and acknowledge mental health instead of it being stigmatised. How can we not be distressed when Olga Ovsyannova held up the placard on Russian State TV, saying, "They're lying to you." Knowing that she would be detained she went ahead. How can we not be distressed when a pregnant woman and her unborn child die in an attack on a maternity hospital?
I also feel impotent however much I try. I have a Polish dentist who can get stuff over there fast and he keeps thanking me for my small contribution, when his country does so much more. My faith community is behaving like the Home Office right now. Our beautiful Victorian building lies empty because only 2-3 of us have returned, yet when I emailed several of them yesterday, about it being put to use, no-one has yet answered. How useless am I and how sloped shouldered are they? I had to prize some small things out of the cold dead fingers of someone I live with, who can easily replace them. Soaps, for crying out loud!
To paraphrase Dylan Thomas, we must Rage, Rage, against the dying of the light. OK he was writing on old age, but another quote reminds us that "Tonight, the lights are going out allover Europe..". Well they are, allover Ukraine and Euope is a step over the border. Imagine living in Lithuania, Finland, those contiguous states and remember MH17 shot down over Russia in 2014. Remember Grozny. Remember Aleppo. Remember Salisbury. The reach IS global.
We must stay strong to protect our health as the MS community so we can help other pwMS in or fleeing Ukraine. We can only do this if we can take small actions and stay angry, furiously, righteously angry. As I write, I fight tears and my wrath boils over at the same time. Catharsis is only possible if I am angry but I can act in small ways.
I can also rejoice that this weekend a Russian Ballerina and an Ukrainian Ballerina will dance at the London Coliseum, with the Royal Ballet, English, National Ballet and The Paris Ballet in aid of Ukraine. Support this if you can. Support Ukraine if you can and support brave Russians who oppose this war. Stay angry.
Hmm how to tackle chronic stress - well the tools we can use to help are pretty well known by now - counselling, peer support, someone to talk to. Even just by talking and someone listening relieves levels of stress. Facilitate and inform of the benefits of exercise, and of mental health tools such as mindfulness and meditation (John Kabat Zinn developed a program several years ago to deal with stress for those with chronic illness). These methodologies can be taught to everyone in their early years and used by individuals in their own home and aren't expensive in themselves. Simplify our lives as much as possible in these days of intrusive, repetitive, sometimes deliberately shocking and disturbing news reports and constant bombardment from notifications on our phones (even the now familiar weather warnings can make me anxious) and encourage connection with the natural world ( benefits were felt from this during lockdowns). Education of everyone in dealing with stress and sources of stress is key.
Yes! I agree 100%, that increased stress leads to increased inflammation worsening many chronic diseases. Please read “ when the body says No” by Dr Gabor Mate. The second chapter is about MS. It is an excellent book on this very topic.
Yes, I have read the book. But unfortunately it doesn't pass muster for the wider community. Their currency is randomised controlled trials.
Good read as always, thank you . My Mom used to say that about my Gran - tea and toast. I know if I hadn’t prepared her meals she would have done the same and did on rare days I couldn’t for one reason or another. There’s so many virtual groups- art, fitness, why not start one for cooking? Simple meals. I mealprep -very simple, three ingredient meals. It’s really made a difference. It took some time, wasn’t what you would consider a chef! Actually, I don’t like cooking but I like eating. And on days I’m too tired to cook I just take it out of the freezer.
“…what can be done to tackle chronic stress in relation to social determinants of health”. …And I listened to the podcast to see if I understood the question. It seems there were a few subquestions within the question. I was a bit more interested in this podcast/post because it is somewhat psychological in nature (kind of up my alley). I’ll start with the specific and work to a broad answer.
What do you do with overwhelming stress in a wartime situation? Sorry to say, but the most successful will be those who are all ready most mentally agile and can fend for themselves. Put aside your MS and tend to the basics. Turn your worry to other most pressing concerns. I think for most of us, that sounds cruel but we’ll also agree, probably, there is no other way. On SNL here in the US last Saturday Night, the first comedy skit considered social media star suggestions to resolve the tragedy. Kenan Thompson played someone who had been accidentally pulled in amongst the social media experts offing stupid solutions, and said something like “I don’t know about you all, but I’d put someone up on a roof (making a gun gesture with his hand), and pop pop pop pop”. Unfortunately, that may be our real solution to this specific problem (i.e. Putin).
To get myself thru to a more functional level myself last week, so I could at least go on feeling in control and do the things I normally do without distracting myself mentally, I first submerged my head into the worst possible outcomes and learned how best to survive. I looked for commonalities from reputable websites, and set timelines for myself to take certain actions, such that if “#2” happens, I’ll do this, if “#3” happens, I’ll do that. I printed out various maps, for example, on how to get to my friend’s house with a basement, in a half hour, so I’d have several routes if I needed them. I filled 10 jugs with water, ready to grab. (On and on.) This is tuff, tuff stuff, the toughest. Nobody wants to say it (similar to “you have MS”), but at least for me, I felt less stressed, not more, after looking at the facts.
In any different scenario, wartime or other, you need a specific starting point. In this situation- my brother, who lives in NYC, assumes he will be vaporized, so he’s not making any plans. He is correct and he knows it. I will not be vaporized because of my location. So if your intention is to survive (and one should face this question head on), and your answer is “yes I want to try to survive”, then it is very helpful to know there are things you should do and not do. I’m glad I took the time to learn them. I feel much better after looking at all the facts, as terrible as they are (again, a parallel to “you have MS!”?). If my plan is to continue living, then I want my plan to be as effective as possible. (Sound like MS?) I don’t want to just “hope for the best”, pray, and see how that goes.
So to my broader answer to the question posed- In my experience helping hundreds of people in therapeutic situations (who were all “stressed”), it starts with a couple basics- do you really care, and do they want to change? First, you really have to, absolutely 100%, care and be able to communicate to them that you CAN help, and they must believe this. But this can only happen if they WANT an improved situation. You can not help those who are unable to hypothesize a better situation. Spend a lot of time working with them on these two basics, but if you can’t get a result, sooner or later you have to stop. They’ll probably give up before you do. So your initial tasks are to see if and why they are unable to understand that change is needed, and at the same time all along, be convincing them that YOU are the one (with their partnership), that can get the job done. Accomplish these two basic tasks and your success rate will dramatically improve.
There are no special quick fixes or new secret strategies that I am aware of. Putin needs to be removed, because he is not going to change.
MS causes stress directly by increasing the energy required for movement and position-holding, and by affecting cognition. An important secondary source is anxiety over the selection of MS treatments and adaptations, many of which are life-altering in themselves. Additionally, the experience of stress by pwMS varies widely according to age, sex, family/marital status, disability level, occupation, income and net worth.
These are social determinants, but it would be wrong to take a purely social-determinist approach to MS stress. Personality traits and family circumstances also play important roles.
Despite the enduring presence in marriage vows of the words “in sickness and in health … till death do us part,” some intimate partnerships are unable to survive the progression of MS disease. What at first seems a boundless source of comfort and inspiration can easily narrow into hard channels of misunderstanding that drain away patience and vitality. The constant presence of negative emotions keeps levels of destructive stress high, inhibiting frank discussion and depleting disease-fighting reserves.
When pwMS describe the heartbreak of collapsed relationships, they often report their partner’s explanation as “I’m not cut out for this,” “I didn’t sign up for this,” or “I should be doing more at this stage of my life.” Sometimes there’s no third party, which suggests that these may be deep-rooted expressions of a disturbing poverty of sentiment. It’s true that many factors external to the individual affect the strength of personal and family ties in the presence of chronic disease. Still, I’m quite sure that MS destroys relationships at all socio-economic levels, and that the stress this induces lasts long after separation is permanent.
Of course MS stress comes with a cost. Some of it is socialized in the form of additional health interventions, income support and mitigation of elevated risk to children. Perhaps when researchers and their funders consider this cost as well as all the determinants of MS health, a more holistic social approach to our affliction will appear not only desirable but indispensable.
Meanwhile, what this SHoH may be doing to people's MS and mental states is anything from a minor flare to a major relapse or progression where it wasn't before. So think how this is affecting pwMS in Ukraine. Ditto all the other terrible 21st century conflicts. If pwMS can reach the west, that's not everyone if they have a high EDSS they can be helped. Like the teams of Drs and medics that have gone out to treat 21 children with cancer the MS community and MS HCPs must do what they can to get them treatment back there. In what form I can't say as a layperson, but the treatments we have now as compared with the 20th century are various. Clearly infusions and stem cell treatments are likely to be impractical, but there are other effective treatments which may not be a match for what they were on. Less ambitious are the education that treat symptoms which are not disease modifying. Pragmatism is called for. We who are or were in the caring professions tend toward idealism but it isn't as good a fit for the current circumstances. Do what you can not what you would like to do.
I think the stress is more like distress. Distress sounds a bit of an old fashioned notion now we know more about wellbeing and acknowledge mental health instead of it being stigmatised. How can we not be distressed when Olga Ovsyannova held up the placard on Russian State TV, saying, "They're lying to you." Knowing that she would be detained she went ahead. How can we not be distressed when a pregnant woman and her unborn child die in an attack on a maternity hospital?
I also feel impotent however much I try. I have a Polish dentist who can get stuff over there fast and he keeps thanking me for my small contribution, when his country does so much more. My faith community is behaving like the Home Office right now. Our beautiful Victorian building lies empty because only 2-3 of us have returned, yet when I emailed several of them yesterday, about it being put to use, no-one has yet answered. How useless am I and how sloped shouldered are they? I had to prize some small things out of the cold dead fingers of someone I live with, who can easily replace them. Soaps, for crying out loud!
To paraphrase Dylan Thomas, we must Rage, Rage, against the dying of the light. OK he was writing on old age, but another quote reminds us that "Tonight, the lights are going out allover Europe..". Well they are, allover Ukraine and Euope is a step over the border. Imagine living in Lithuania, Finland, those contiguous states and remember MH17 shot down over Russia in 2014. Remember Grozny. Remember Aleppo. Remember Salisbury. The reach IS global.
We must stay strong to protect our health as the MS community so we can help other pwMS in or fleeing Ukraine. We can only do this if we can take small actions and stay angry, furiously, righteously angry. As I write, I fight tears and my wrath boils over at the same time. Catharsis is only possible if I am angry but I can act in small ways.
I can also rejoice that this weekend a Russian Ballerina and an Ukrainian Ballerina will dance at the London Coliseum, with the Royal Ballet, English, National Ballet and The Paris Ballet in aid of Ukraine. Support this if you can. Support Ukraine if you can and support brave Russians who oppose this war. Stay angry.
The covid lockdowns had a HUGE negative effect on EVERYONE'S mental health for which the true cost won't be known for many years.