"Some people (myself, in this case) are not social creatures, and their nature is to be detached, different and apart. Determination and endurance and vision of what I need to achieve (with my work as an artist) I have in plenty. The real problem is : BEWILDERMENT.
Despite everything, I deteriorate. Diet is wholesome, family life good, exercise certainly limited by this condition. My question is not: Why me? because the answer is obvious, but : What do you want from me? I have been asking my “body” this for 9 years, I have looked for the answer in poetry, in which there are distractions, but what’s missing is a straightforward answer, I imagine to be found somewhere— perhaps in the philosophy of medicine— WHAT THE FUCK DO YOU WANT, except to undermine my attachment to life?"
This is very interesting, but there is a real risk – which is widespread in contemporary public health strategies – that you end up leaving those struggling with disease feeling that they are to blame for their affliction. Susan Sontag wrote brilliantly about this:
Agree that grit goes a long way in helping to keep low mood & low motivation at bay - I would say my grit score is high (largely due in my opinion to having been a competitive athlete in my youth). However perceiving oneself as having grit and being told how ‘resilient’ I am then tends to make me feel ‘guilty’ for the difficult days. It should be acceptable to feel rotten having had to adjust so much to life with MS and change ones goals so drastically; but then I berate myself with ‘where is your grit?’
Very interesting and I’ll re-read this in detail when I’m at home, thank you Prof G. What I would like to add, as it’s pertinent to me as a parent, is that although resilience, hope and grit may be modifiable to an extent that these factors are also seemingly innate and possibly part of our brain structure - you as the neurologist may be able to give your views on this? I’ve observed my two boys, one with autism/ADHD and the other with ADD/dyspraxia/ambidextrous and can see that there are differences in how they experience and process the world. They are incredibly aware of sensory things we might not notice and acutely aware of other peoples emotions, the ADHD/ADD affects executive functions and they have a tendency to dwell, worry, think deeply and rigorously, seek the truth and be affected by the environment in a way others may have naturally more filters or layers of disinterest to protect them - so they may experience trauma or stress from the same thing that wouldn’t bother someone else. My point being that the term ‘resilience’ can then feel like blame or judgement for not trying harder. Just like the term ‘fat’ can feel to someone struggling with metabolic disease.
Having said that, I do think we all need to look at what and how to optimise our mental health AND that medicine should look closely at neurodiversity especially when looking to support mental health and how people cope with their physical health.
“What do I think?” Two out of three of these (at least) are needed to fight the battle. If the resilience, hope, and grit had once been there, then “treatment” often gets those things back or hastens that process. But if you are “low” on these traits, “minor surgery” (as in brief social work counseling) probably won’t help. You are talking about huge personal changes. There are ways to bring about these changes, but they are done only BY the person, not TO the person. Many different methods, same outcome.
Not sure about the use of the concept “hope” if it refers to an outside source, whatever that may be (God…Biotin). Then the person has to defend their hope irrationally and re-enroll themselves mentally in their crusade, whenever evidence pops up to the contrary. They stop critically thinking. Better keeping your feet on the ground, I “believe”. Perhaps the word “trust” (but not blind) works better. [I also don’t like T-shirts that declare oneself a warrior after two infusions with the belief that everything is going to be normal again. I “hope” so!?]
Obviously I am a realist. “Grit” implies some nastiness in the process, which MS certainly entails. I think the word grit fits well in this case. (Note, I did not read the research.)
Yesterday I finally got round to watching the 2015 bbc documentary Mission Joy with Archbishop Desmond Tutu and the Dalai Lama.
I was really stuck by what was said by Richard Davidson Director for the Centre for Healthy Minds at Winconsin- Madison Uni that well-being is a skill and can be learned.
Consequently I googled the centre to discover that an app is available for free called Healthy Minds with contents based on what Davidson and other neuroscientists have learned.
With the extreme pressures the NHS is under and contact once a year from a neuro and nurse, if you’re lucky, then it’s providing awareness of sources of support for developing hope, resilience and GRIT that is most likely the best way forward.
One thing you’ve more routinely referenced in regards to topics like this ProfG, is social deprivation and isolation.
My initial reaction to this piece was to wonder just how much my hope, resilience and GRIT is due to being financially secure, happily married and with a supportive wider network.
Oh and I guess having had a good education too - was told I did not have Rapidly Evolving Highly Active RRMS and would be prescribed Tecfidera.
Fought my corner in writing resulting in a reference to a London centre where I was treated with Alemtuzumab.
The sad truth is that well-being maybe a skill that can be learned but a person has to have the capacity to engage with it. I do hope that the NHS facilitation of self care does improve however.
To me, always hoping for something else isn't a satisfactory way to live. If I want something to change I will endeavour to make it happen. If that is not possible then I will accept what is, but to always hope it will change seems futile, and painful. Better to learn to accept what is than to be stuck in the perpetual dissatisfaction that is hope. When people question 'what do we have if we don't have hope?' My answer is acceptance. It makes sense in my mushed brain anyway, and I think makes me more resilient.
Grit sounds outdated and a little macho to me. I prefer the word fortitude. It takes courage and strength to get through each day when it feels like an endurance test. I agree that HCPs could [dislike the should word too] prescribe & use interventions to help pwMS.
More than anything what I would like is equal access to every person with MS to an adequate neurology service. We are a long way from this in the UK. It is soul destroying to read posts on ShiftMS which year on year seem unchanging.
Experiences that I have heard from other people I have met [through meditation groups and in the outpatients setting] simplyblow my mind. Mostly pwMS are forced into self mange their disease regardless of their level of education, finances, social support. There is no other choice.
HCPS need resources to support a broken system. Doubtless too managers instruct them too to build their resilience.
In terms of Hope it might be useful to have skills training for neurology HCPs to avoid using negative language to pwMS and their relatives. I can quote some humdingers, but I won't as it's a Friday evening.
Thanks for posting another thought provoking item.
I can take this two ways. I mean, is simply choosing to continue to live my life considered “resilience” or “grit” or do I have to GoPro myself climbing Mt Everest for it to count?
When I was diagnosed 3 years ago, I had over 50 lesions (3 new). I had few symptoms that bothered me so I considered myself lucky but I obviously had this condition a long time. Wasn’t my body showing “resilience” until then? When I kept getting out of bed to go to work in spite of the sheer exhaustion? When I kept going to Drs with vague symptoms that just led to more tests, misdiagnosis, and multiple antidepressants that didn’t work?
I did try to keep doing things I enjoyed and not letting it all keep me down. Does that qualify as “grit?”
Over the last two years, symptoms have been creeping up on me, slowly getting worse. (Have I run out of reserves?) I’ve tried to stick to a “Healthy Heart” diet (w/ intermittent fasting on work days), & exercise more (I’ve lost 10 lbs). I try to keep my mind active with web classes, I continue to work full time, do yard work, etc. But I still feel I’m getting worse. My MS doc doesn’t believe me. No new lesions, you see.
I’m afraid these new designations (resilient or not) will discourage people from talking about their worsening symptoms. Who wants to admit that they don’t have enough “grit” to just push thru those bad days? Who wants to be considered weak & whiny? I mean if you can’t drag yourself up off that couch, you don’t deserve to complain, am I right?!! /sarcasm
Right now, I try to pace myself at work (keyword - try). At home, I may plan 5 things but only get 2 or 3 things actually done. Truly more or less depending on the day.
I get what you say. But I don’t know the difference between “showing resilience” and just living my life. I’ll continue to work and I’ll try to find the little things in life that make me happy til my dying day but I don’t know if that’s enough to keep me from getting worse.
I always relished difficulties. That may have made me more resilient. Bad things happen to everyone, so having some resiience enables one to cope better when they happen. The exception was when depression hit twice; because you have been effectively "taken over" by chemical processes or your overthinking brain. In those two episodes I couldn't handle even minor difficulties. Yet, though pwMS more often experience depression, I believe it was my MS but 2 neuros in 2 countries repudiated my opinion. Weird.
My experience of grit/determination/resilience (GDR) is that they are extremely difficult things to teach and modify.
One’s individual base traits are often picked up very young (even inherited to some extent?) through parental example and modelling in my experience.
I have found that people seem to have X level of grit and when they are exposed to adversity (MS diagnosis) the extent of an individual’s GDR becomes clear.
Having had prior opportunity to manage stressful situations helps condition one further, but if a diagnosis is the first time one has been tested then it must be v difficult to develop GDR on demand.
Furthermore, when they decide they’ve had enough and throw in the towel it is very difficult to get them to change that decision.
It is also a moveable feast, no one has a determinable fixed point as external influences affect us differently at different times.
So I am doubtful regarding the efficacy of a post-diagnosis professional intervention to make any significant changes to an individual’s GDR.
Is it (yet another) thing that a good HCP works with and around and also has to accept what they are presented with a patient with low GDR. What if the HCP is themselves not scoring very high re GDR? That has been my personal experience and as a patient it is frustrating to find you are out of step with your HCP regarding this.
I lasted a very long time with progressive multiple sclerosis BECAUSE of what you’re calling ‘resilience.' I call it tenacity, or at least it feels like it. I am now bed bound, and my EDSS is in the 8 to 8.5 range. But for fifteen years I was able to stay upright, manage a job, drive a car and take care of my ADLs, albeit with increasing difficulty, even though the disability was obviously getting worse and I shouldn’t have made it so long.
A few things hastened the extreme disability: I broke through most DMTs fairly quickly, I had to stop taking Tysabri after 24 months due to PML risk (too much JC virus antibody—shouldn’t have played in the sewer tunnels as a kid), I was a smoker (bad), I had multiple bouts of heavy stress (lost both parents, lost their home, lost my home, lost everything), and many serious infections (usually UTIs) that just wouldn’t stop. But all throughout the difficulty and hellish suffering, I didn’t give up and kept pushing forward. I didn’t always have hope… there were many dark days I felt completely hopeless and I was forlorn. But something brought me out of the dark hole and I trudged on. Before my mom passed away, she asked me to promise her I would keep fighting—she had known about my MS since my diagnosis in 2002, and she passed in 2007. It could be part of the fight as well as part of the exacerbation of disability, but I was fiercely (resilient?) for many years prior.
I believe that fortitude and being resilient is very important in managing the disease itself as well as the possibly resultant disability. I also believe that yes, the treating physicians should be instrumental in getting involved, and facilitating in providing resources for people whether they seem capable or not of taking control of their ‘resilience.' Providing resources and referrals to mental health professionals, books and other media, referring patients to stress reducing activities, and other forms of mental hygiene. Also it would help to mention/remind people that exploring new activities and mental exercises that they are unfamiliar with—whether proficient or not—helps with the resilience and brain plasticity. Because it’s in the trying, and practice and learning new things that helps. And it’s not like dieting where you see results somewhat timely, but it matters over time and the staying power to keep as much disability away as long as possible.
Thank you Prof G. The issue of grit resilience and hope is that magic component determining success in life. In the old fragrance advertising campaign “if you’ve got it, flaunt it.” I am interested that a study has been able to track these factors.
I am a firm believer that when is own attitude influences the outcome.Whether it’s NM is treatment, an interview for a job,a performance appraisal, one’s attitude towards the activity must impact the outcome. 
An email from a subscriber:
"Some people (myself, in this case) are not social creatures, and their nature is to be detached, different and apart. Determination and endurance and vision of what I need to achieve (with my work as an artist) I have in plenty. The real problem is : BEWILDERMENT.
Despite everything, I deteriorate. Diet is wholesome, family life good, exercise certainly limited by this condition. My question is not: Why me? because the answer is obvious, but : What do you want from me? I have been asking my “body” this for 9 years, I have looked for the answer in poetry, in which there are distractions, but what’s missing is a straightforward answer, I imagine to be found somewhere— perhaps in the philosophy of medicine— WHAT THE FUCK DO YOU WANT, except to undermine my attachment to life?"
This is very interesting, but there is a real risk – which is widespread in contemporary public health strategies – that you end up leaving those struggling with disease feeling that they are to blame for their affliction. Susan Sontag wrote brilliantly about this:
https://en.wikipedia.org/wiki/Illness_as_Metaphor
Agree that grit goes a long way in helping to keep low mood & low motivation at bay - I would say my grit score is high (largely due in my opinion to having been a competitive athlete in my youth). However perceiving oneself as having grit and being told how ‘resilient’ I am then tends to make me feel ‘guilty’ for the difficult days. It should be acceptable to feel rotten having had to adjust so much to life with MS and change ones goals so drastically; but then I berate myself with ‘where is your grit?’
I came across this quote from Professor Stephen Hawking some years ago ...
'... however difficult life may seem, there is always something you can do and succeed at. It matters that you don’t just give up'.
To me, it's a very special set of words given SH's situation.
I have PPMS and some days can be darker than others.
This quote is always with me and helps to drive me on.
Grit, determination, resilience, ‘thick skin’, & STUBBORNNESS are what have got me through the last 17.5 years of my MS!!
Very interesting and I’ll re-read this in detail when I’m at home, thank you Prof G. What I would like to add, as it’s pertinent to me as a parent, is that although resilience, hope and grit may be modifiable to an extent that these factors are also seemingly innate and possibly part of our brain structure - you as the neurologist may be able to give your views on this? I’ve observed my two boys, one with autism/ADHD and the other with ADD/dyspraxia/ambidextrous and can see that there are differences in how they experience and process the world. They are incredibly aware of sensory things we might not notice and acutely aware of other peoples emotions, the ADHD/ADD affects executive functions and they have a tendency to dwell, worry, think deeply and rigorously, seek the truth and be affected by the environment in a way others may have naturally more filters or layers of disinterest to protect them - so they may experience trauma or stress from the same thing that wouldn’t bother someone else. My point being that the term ‘resilience’ can then feel like blame or judgement for not trying harder. Just like the term ‘fat’ can feel to someone struggling with metabolic disease.
Having said that, I do think we all need to look at what and how to optimise our mental health AND that medicine should look closely at neurodiversity especially when looking to support mental health and how people cope with their physical health.
“What do I think?” Two out of three of these (at least) are needed to fight the battle. If the resilience, hope, and grit had once been there, then “treatment” often gets those things back or hastens that process. But if you are “low” on these traits, “minor surgery” (as in brief social work counseling) probably won’t help. You are talking about huge personal changes. There are ways to bring about these changes, but they are done only BY the person, not TO the person. Many different methods, same outcome.
Not sure about the use of the concept “hope” if it refers to an outside source, whatever that may be (God…Biotin). Then the person has to defend their hope irrationally and re-enroll themselves mentally in their crusade, whenever evidence pops up to the contrary. They stop critically thinking. Better keeping your feet on the ground, I “believe”. Perhaps the word “trust” (but not blind) works better. [I also don’t like T-shirts that declare oneself a warrior after two infusions with the belief that everything is going to be normal again. I “hope” so!?]
Obviously I am a realist. “Grit” implies some nastiness in the process, which MS certainly entails. I think the word grit fits well in this case. (Note, I did not read the research.)
Yesterday I finally got round to watching the 2015 bbc documentary Mission Joy with Archbishop Desmond Tutu and the Dalai Lama.
I was really stuck by what was said by Richard Davidson Director for the Centre for Healthy Minds at Winconsin- Madison Uni that well-being is a skill and can be learned.
Consequently I googled the centre to discover that an app is available for free called Healthy Minds with contents based on what Davidson and other neuroscientists have learned.
With the extreme pressures the NHS is under and contact once a year from a neuro and nurse, if you’re lucky, then it’s providing awareness of sources of support for developing hope, resilience and GRIT that is most likely the best way forward.
One thing you’ve more routinely referenced in regards to topics like this ProfG, is social deprivation and isolation.
My initial reaction to this piece was to wonder just how much my hope, resilience and GRIT is due to being financially secure, happily married and with a supportive wider network.
Oh and I guess having had a good education too - was told I did not have Rapidly Evolving Highly Active RRMS and would be prescribed Tecfidera.
Fought my corner in writing resulting in a reference to a London centre where I was treated with Alemtuzumab.
The sad truth is that well-being maybe a skill that can be learned but a person has to have the capacity to engage with it. I do hope that the NHS facilitation of self care does improve however.
To me, always hoping for something else isn't a satisfactory way to live. If I want something to change I will endeavour to make it happen. If that is not possible then I will accept what is, but to always hope it will change seems futile, and painful. Better to learn to accept what is than to be stuck in the perpetual dissatisfaction that is hope. When people question 'what do we have if we don't have hope?' My answer is acceptance. It makes sense in my mushed brain anyway, and I think makes me more resilient.
Grit sounds outdated and a little macho to me. I prefer the word fortitude. It takes courage and strength to get through each day when it feels like an endurance test. I agree that HCPs could [dislike the should word too] prescribe & use interventions to help pwMS.
More than anything what I would like is equal access to every person with MS to an adequate neurology service. We are a long way from this in the UK. It is soul destroying to read posts on ShiftMS which year on year seem unchanging.
Experiences that I have heard from other people I have met [through meditation groups and in the outpatients setting] simplyblow my mind. Mostly pwMS are forced into self mange their disease regardless of their level of education, finances, social support. There is no other choice.
HCPS need resources to support a broken system. Doubtless too managers instruct them too to build their resilience.
In terms of Hope it might be useful to have skills training for neurology HCPs to avoid using negative language to pwMS and their relatives. I can quote some humdingers, but I won't as it's a Friday evening.
Thanks for posting another thought provoking item.
I can take this two ways. I mean, is simply choosing to continue to live my life considered “resilience” or “grit” or do I have to GoPro myself climbing Mt Everest for it to count?
When I was diagnosed 3 years ago, I had over 50 lesions (3 new). I had few symptoms that bothered me so I considered myself lucky but I obviously had this condition a long time. Wasn’t my body showing “resilience” until then? When I kept getting out of bed to go to work in spite of the sheer exhaustion? When I kept going to Drs with vague symptoms that just led to more tests, misdiagnosis, and multiple antidepressants that didn’t work?
I did try to keep doing things I enjoyed and not letting it all keep me down. Does that qualify as “grit?”
Over the last two years, symptoms have been creeping up on me, slowly getting worse. (Have I run out of reserves?) I’ve tried to stick to a “Healthy Heart” diet (w/ intermittent fasting on work days), & exercise more (I’ve lost 10 lbs). I try to keep my mind active with web classes, I continue to work full time, do yard work, etc. But I still feel I’m getting worse. My MS doc doesn’t believe me. No new lesions, you see.
I’m afraid these new designations (resilient or not) will discourage people from talking about their worsening symptoms. Who wants to admit that they don’t have enough “grit” to just push thru those bad days? Who wants to be considered weak & whiny? I mean if you can’t drag yourself up off that couch, you don’t deserve to complain, am I right?!! /sarcasm
Right now, I try to pace myself at work (keyword - try). At home, I may plan 5 things but only get 2 or 3 things actually done. Truly more or less depending on the day.
I get what you say. But I don’t know the difference between “showing resilience” and just living my life. I’ll continue to work and I’ll try to find the little things in life that make me happy til my dying day but I don’t know if that’s enough to keep me from getting worse.
I always relished difficulties. That may have made me more resilient. Bad things happen to everyone, so having some resiience enables one to cope better when they happen. The exception was when depression hit twice; because you have been effectively "taken over" by chemical processes or your overthinking brain. In those two episodes I couldn't handle even minor difficulties. Yet, though pwMS more often experience depression, I believe it was my MS but 2 neuros in 2 countries repudiated my opinion. Weird.
My experience of grit/determination/resilience (GDR) is that they are extremely difficult things to teach and modify.
One’s individual base traits are often picked up very young (even inherited to some extent?) through parental example and modelling in my experience.
I have found that people seem to have X level of grit and when they are exposed to adversity (MS diagnosis) the extent of an individual’s GDR becomes clear.
Having had prior opportunity to manage stressful situations helps condition one further, but if a diagnosis is the first time one has been tested then it must be v difficult to develop GDR on demand.
Furthermore, when they decide they’ve had enough and throw in the towel it is very difficult to get them to change that decision.
It is also a moveable feast, no one has a determinable fixed point as external influences affect us differently at different times.
So I am doubtful regarding the efficacy of a post-diagnosis professional intervention to make any significant changes to an individual’s GDR.
Is it (yet another) thing that a good HCP works with and around and also has to accept what they are presented with a patient with low GDR. What if the HCP is themselves not scoring very high re GDR? That has been my personal experience and as a patient it is frustrating to find you are out of step with your HCP regarding this.
Dominic
I lasted a very long time with progressive multiple sclerosis BECAUSE of what you’re calling ‘resilience.' I call it tenacity, or at least it feels like it. I am now bed bound, and my EDSS is in the 8 to 8.5 range. But for fifteen years I was able to stay upright, manage a job, drive a car and take care of my ADLs, albeit with increasing difficulty, even though the disability was obviously getting worse and I shouldn’t have made it so long.
A few things hastened the extreme disability: I broke through most DMTs fairly quickly, I had to stop taking Tysabri after 24 months due to PML risk (too much JC virus antibody—shouldn’t have played in the sewer tunnels as a kid), I was a smoker (bad), I had multiple bouts of heavy stress (lost both parents, lost their home, lost my home, lost everything), and many serious infections (usually UTIs) that just wouldn’t stop. But all throughout the difficulty and hellish suffering, I didn’t give up and kept pushing forward. I didn’t always have hope… there were many dark days I felt completely hopeless and I was forlorn. But something brought me out of the dark hole and I trudged on. Before my mom passed away, she asked me to promise her I would keep fighting—she had known about my MS since my diagnosis in 2002, and she passed in 2007. It could be part of the fight as well as part of the exacerbation of disability, but I was fiercely (resilient?) for many years prior.
I believe that fortitude and being resilient is very important in managing the disease itself as well as the possibly resultant disability. I also believe that yes, the treating physicians should be instrumental in getting involved, and facilitating in providing resources for people whether they seem capable or not of taking control of their ‘resilience.' Providing resources and referrals to mental health professionals, books and other media, referring patients to stress reducing activities, and other forms of mental hygiene. Also it would help to mention/remind people that exploring new activities and mental exercises that they are unfamiliar with—whether proficient or not—helps with the resilience and brain plasticity. Because it’s in the trying, and practice and learning new things that helps. And it’s not like dieting where you see results somewhat timely, but it matters over time and the staying power to keep as much disability away as long as possible.
Basically to build resilience.
Mindfulness, reflection, investigation into a subject and expert opinion need to be perused and balanced all the time. 
Thank you Prof G. The issue of grit resilience and hope is that magic component determining success in life. In the old fragrance advertising campaign “if you’ve got it, flaunt it.” I am interested that a study has been able to track these factors.
I am a firm believer that when is own attitude influences the outcome.Whether it’s NM is treatment, an interview for a job,a performance appraisal, one’s attitude towards the activity must impact the outcome.