For those of you with the relapse-onset MS, not only do you have to go through a stage of denial when you are diagnosed with MS, but again when you realise that you have progressive disease.
What an amazing person and neurologist, almost cried reading the care for this patient. I think I had guilt rather than denial stage - guilt that I might become a burden, guilt that a potentially disabled partner wasn’t what my husband had signed up for, guilt I might be letting everyone down if I couldn’t do what I did before, guilt that I had made my family worry about me, guilt that I may deprive my young kids of an active and engaged mum, guilt about taking up resources in the NHS, guilt about feeling self absorbed while I came to terms with MS and the daily impact of symptoms, guilt about how awkward it made others feel being well when I was not, guilt about the future as well as the present. All this guilt made me grab Lemtrada with both hands and come home each day after infusions and pretend to my kids I was ‘at work’ all week for a change but was home to make them dinner! I was desperate for people not to know my MS status to save myself the guilt and their awkwardness! I think because we live with MS daily, the struggle is how to define it as part of you, your identity, your daily experience but for not want to define you either, it’s quite a balancing act as an unwelcome guest in your body! Another valuable newsletter and want to take the opportunity to wish prof G and his family a very happy Christmas and NY, many thanks x
Just wishing i had had such a wise neurologist as you when I got diagnosed. Been struggling and wasting years in depression and anxiety. It's been a long road and still is. On the other hand, I bet in several other big crises in my life I've been better equipped because of everything I've learned on my bumpy uphill road with MS.
Absolutely on point as usual Prof. I'm slightly jealous of this patient. She probably left the consultation less anxious as she knows she is now in the right hands. Arranged to see her again in 2-4 weeks? most patients can only dream of this level of service. For me and i assume a lot of others, half the battle of this disease is the fight to be heard. To be monitored. To be treated. I told my current neurologist at our first appointment that you need to treat the patient and not just the disease yet i still dont feel like that this happens. I'm making my own medical decisions now with potentially serious consequences.....naturally i am a bit anxious about it
Whilst we can keep adding letters for ever-increasing acronyms, may I suggest another letter for consideration? R for Relief... Having been misdiagnosed for years and declining steadily, to finally have a reason why was a relief, however head-spinning the realisation of MS would mean.
Actually, add another letter. F. No, not that one... F for Frustration. After years of uncertainty, I wanted to get stuck in! Unfortunately, the systems around MS are not so inclined to move at speed and there are sound medical reasons for some of that. However, as someone who has been pitched several years into Progressive MS in one jump, the system's single speed, built around the 85% of pwMS who are RR and for the most part, responding to DMT's to a greater or lesser extent, was indeed frustrating. Frustration can manifest as Anger, but I prefer "Determined".
I'm afraid I've not found much use for Denial, Depression, Anxiety, Anger or mindfulness generally, though I accept that may make me odd. Life is a challenge. MS is just another. It's a pain and it stops you doing things you used to love doing but in reality it forces you to concentrate on other things instead. Like contributing to threads on forums :D
Your desire to improve life for those with MS is so clear ProfG and personally
I’m incredibly grateful.
As a mum to a child with MS I recognise those stages as a relative. He’s actually coped with the diagnosis better than me. I can add guilt and sense of responsibility to that list as a parent. We are told the future is vastly different to that one painted by the stats yet also recognise there are so many gaps in knowledge and treatment and it isn’t at all clear what the path will be. This sense of the unknown makes coming to terms with the diagnosis much harder than I expected. It is so hard to find peace and acceptance when you don’t know what you are trying to accept. Hope isn’t an easy emotion to maintain.
Is it denial if you avoid thinking about MS but do everything you are supposed to do (i.e. take DMT, have blood regularly checked + MRIs)? I was diagnosed whilst in the process of divorce, with three young children, one of which is on the spectrum. After a period of quite a lot of anxiety, I started on tecfidera. Thankfully, I am tolerating this DMT really well but I have no idea if it works. Repeat MRI is in a few weeks. However, I realised that I don't think about MS as much as I did when I was first diagnosed. I try to get on with life, work, my children and follow my treatment. I stop myself from thinking how bad it can get and what will happen to me, my children, my job. I don't know if this is denial or trying to survive (mentally at least).
Bravo Prof G for being understanding and exploring this! Thank you! I would just expand or (perhaps educate) that it may be more accurate to say that many MSers also go through the stages of grieving, to some degree, with each functional loss (which is often with every major relapse). That has been the case for me with MS, and that is how it is often communicated online in the many MS-patient spaces out there by MSer, because MSers must essentially "redefine" themselves *within* these new functional parameters again; it might be a mini-version of the stages of grieving that one goes through at onset and at SPMS, but they go through it all the same, as I have many times. The bigger the loss, the closer it is to full blown grieving again, though I've seen some with very minor functional losses go through it too. And, this is not delayed or unprocessed grief, the folks that report this are many years in, have already been to counseling, psychiatry, and have often been given a clean bill of thriving and "coping very well," as has been my case; having more functional loss (relapse) sets it off again regardless, just in a smaller way, until we get to be pros at frequently grieving (at least if relapses continue and for those that gather tools, supports, and do the hard work to face and deal with the new loss in healthy ways, and move on from it). Grieving is not something an MSer is ever really completely done with (yet), as long as they continue to accrue functional loss and have to redefine their understanding of themselves and their limitations; we rather get reprieves from it, some longer than others (though one day hopefully this will change). Some even experience grieving periodically in the absence of relapse, due to the brain thinking there's things we *should* be able to do (based on memory of old bodily parameters, which the brain continually draws from to inform know-how on performing new actions); but, we have a body/brain that no longer *conforms* to, or can *comply* by those parameters. Those that collected good coping tools and strategies have to continually remind themselves of this, to avoid unnecessary extra grieving, interestingly.
I often say that with MS you are constantly on the stages of acceptance. You get diagnosed, you get to grips with it and then another event happens and you need to deal with each stage related to that new episode. Recently I saw a video of myself dancing (ballet) and was so disappointed with myself that it wasn't how I thought I was, I looked "disabled" and I found that really hard. I knew my balance was poor and I had a bit of a clonky walk but this brought it home. So I will keep doing it but just avoid the camera and think that I am doing it like I used to. Denial, as long as I can't see it then I am OK.
Well said Prof as can relate to all those comments. Having still trouble in accepting, though realise that the situation of SPMS that I am entering will not go away anytime soon. Believe that smouldering MS is the key to solving/curing this disease and probably won't be done in my time here (I'm 54), but you never know 😜😜. Was diagnosed in 99, so 22 years a veteran,but has not let my ambitions in life be thwarted to the extent that I lost hope. Okay, so I'm not playing golf on TV and representing my country, Probably wasn't good enough in the first place, but I've travelled and lived in foreign lands one of my goals, have two grown up Sons (19 & 21) and a lovely 15mth old daughter. Don't work anymore but have a wonderful caring wife who understands me ! So really life is not that bad just frustrating. Let's hope new trials deliver fresh hopes, but realistic ones, not ones that are sensationalised to create curative headlines.
Thanks for another very useful newsletter! I think I skipped the first 2 emotions, but I can identify with the others, particularly the anxiety and a fear of the future. It’s a fine balancing act between acceptance, realism and hope. The Ted Talk ‘A lover letter to realism in a time of grief’ was sent to me soon after diagnosis, and although it is not specific to MS, I found it very helpful in its exploration of acceptance of disability and the hope provided by medical research.
💯 agreed. My husband is sp ms, and unfortunately cognitive decline is one of his biggest problems although as you can imagine after having the disease for over 30 years the list is numerous. But the cognition issues means he's almost like someone with dementia. He forgets that we have come over the hurdle of having to use crutches and will wake up back at the "what will people think, I don't need them, I'm not disabled..." so the denial acceptance etc can be a daily issue! He will wake up with a "new" issue everyday but actually it is not a new issue he's probably had it for over 15 years. MS is awful and I'm afraid in the UK well atleast the Leicestershire area as he was told this year, you have progressed so far there's nothing a neurologist can do so you won't be seeing one anymore, the MS nurse is at the end of the phone if you need them.😔
My first MS episode was diagnosed in 2008 as Transverse Myelitis (and a one off demyelinating episode). Biggest and worst I have ever had. A good year to fully recover and I was in denial it would ever happen again. I was in Auckland Hospital and the MS Nurse was talking about being peg-fed and my mind was screaming, 'Yeah, but that's not going to be me!' Skip 6 years, two more small episodes, UK Neurologist diagnoses MS. Brain screaming, 'THIS STILL ISN'T ME! I am special! I evaded this once, I will show you all!' Denial. Denial. Walked out of her consulting room and slid down the wall sobbing. No understatement, GRIEF. Family, (apart from Sister, who is medical and was with me in NZ for the first episode and rehabilitation) didn't get it. Denial, denial. Husband, just like me, 'Yeah but you are different'. None of my family read anything about MS, or want to know. I am not only any DMT's. I've had a baby since (fatigue and brain fog are standard). I am not sure what this says about me and my family.... I think we are all stuck in the denial phase over a decade on.
I agree with your analysis of MS and its affect upon the patient as well as their hopes and aspirations.
For me the problems really hit home at medical retirement and maybe started a few years before that date. The biggest help for me when employment turned into history was counselling but there was a bit of trial and error before I found someone who would engage in a 2 way conversation. The conversations stayed in the counselling room but the process really cleared my head. The elephant in the room was huge but after 18 months it had shrunk to the size of a dog. Now the emotional baggage became more manageable and I could get on with my life once again..
You don't mention counselling but I thought it was worth a mention, I did have to pay for it myself but I do not begrudge the cost.
Anxiety is really nasty - like a worm inside you, twisting away. Mine, thankfully, is largely in the past, and was helped by being able to recognise it through counselling and wise friends. I was shown that the process of 'catastrophising' would kick in the moment something unexpected happened with an MS symptom. Judgement would disappear and the worm of anxiety would start. The biggest helps were a) getting prompt help/support from the MS team and b) exercise. Knowing it could all come back if circumstances change makes you ever-vigilant. I suppose that's resilience!
Ist unrelated point- I usually give charitable contributions this time of year but don’t find any for the MS Selfie. I am reluctant to sign up as a “member” because I don’t want to obligate myself for future payments. But I’d love to give a donation. If so, can it be taken on line from the US, and might The Selfie “go through the hoops” to become a charitable organization for tax purposes?
On to my comment- This is “cutting edge” stuff, in my opinion, that is central to both the MS Experience, and making an effective plan. It needs to have its own heading within the Doctor’s categories. More important even, than hearing about DMTs. Unlike other illnesses, this illness allows one to continue on for a long time regardless of the choices non-choices they make. The consequences of those choices are not felt for a long time and are not reversible. Denial and misinformation is probably, more often, a serious mistake.
Denial is personal to me because of my training and practice as a psychologist (as I acquired MS). I “know” denial. The ways a person has “gotten by” in life, the self-explanations they have for their successes even when totally inaccurate, those things will get firmly in the way of recognizing the need for, and planning for, change. And those things can run solidly deep into one’s personality, making one unable to budge.
Ross’s stages are one way of talking about issues, but the stages are all barriers to arriving at the truth, and then moving forward. I would add “Superstitious Learning” (eluded to above) as a major barrier. I used to teach it to my undergrads, because it is easily visually remembered “If you have a lab duck, and the duck happens to be hungry, standing on one leg and you feed it, it will forever stand on one leg when it is hungry”. (Then you can go back to that example when teaching other stuff and ask students, “Are you a duck standing on one leg?” In other words, does what you are planning to do, have any actual chance for success? Or are you operating solely on past luck, chance and coincidence?
This is what I see frequently on the internet- people making totally false assumptions and real time conclusions about what is working or not working for their MS as they think it is. They need some real coaching early on in their prognosis on how to deal with their illness, and I don’t think many at all get that. Then they waste 5 years and come on a blog, clearly feeling hopless wondering what is wrong, and they are given further misinformation. It’s tragic.
I was diagnosed before DMTs and I was at a University. I read up on what I could. My course was not guaranteed and there was no consensus, but perhaps only for the Swank Diet, which I did in earnest. I had my amalgams removed. Then Betaseron came out, and there was no choice. If you wanted a better chance, they said, do this injection every other day. So we did it, I did it for 23 years. It was a simple choice with no complaints.
What an amazing person and neurologist, almost cried reading the care for this patient. I think I had guilt rather than denial stage - guilt that I might become a burden, guilt that a potentially disabled partner wasn’t what my husband had signed up for, guilt I might be letting everyone down if I couldn’t do what I did before, guilt that I had made my family worry about me, guilt that I may deprive my young kids of an active and engaged mum, guilt about taking up resources in the NHS, guilt about feeling self absorbed while I came to terms with MS and the daily impact of symptoms, guilt about how awkward it made others feel being well when I was not, guilt about the future as well as the present. All this guilt made me grab Lemtrada with both hands and come home each day after infusions and pretend to my kids I was ‘at work’ all week for a change but was home to make them dinner! I was desperate for people not to know my MS status to save myself the guilt and their awkwardness! I think because we live with MS daily, the struggle is how to define it as part of you, your identity, your daily experience but for not want to define you either, it’s quite a balancing act as an unwelcome guest in your body! Another valuable newsletter and want to take the opportunity to wish prof G and his family a very happy Christmas and NY, many thanks x
Just wishing i had had such a wise neurologist as you when I got diagnosed. Been struggling and wasting years in depression and anxiety. It's been a long road and still is. On the other hand, I bet in several other big crises in my life I've been better equipped because of everything I've learned on my bumpy uphill road with MS.
Absolutely on point as usual Prof. I'm slightly jealous of this patient. She probably left the consultation less anxious as she knows she is now in the right hands. Arranged to see her again in 2-4 weeks? most patients can only dream of this level of service. For me and i assume a lot of others, half the battle of this disease is the fight to be heard. To be monitored. To be treated. I told my current neurologist at our first appointment that you need to treat the patient and not just the disease yet i still dont feel like that this happens. I'm making my own medical decisions now with potentially serious consequences.....naturally i am a bit anxious about it
Whilst we can keep adding letters for ever-increasing acronyms, may I suggest another letter for consideration? R for Relief... Having been misdiagnosed for years and declining steadily, to finally have a reason why was a relief, however head-spinning the realisation of MS would mean.
Actually, add another letter. F. No, not that one... F for Frustration. After years of uncertainty, I wanted to get stuck in! Unfortunately, the systems around MS are not so inclined to move at speed and there are sound medical reasons for some of that. However, as someone who has been pitched several years into Progressive MS in one jump, the system's single speed, built around the 85% of pwMS who are RR and for the most part, responding to DMT's to a greater or lesser extent, was indeed frustrating. Frustration can manifest as Anger, but I prefer "Determined".
I'm afraid I've not found much use for Denial, Depression, Anxiety, Anger or mindfulness generally, though I accept that may make me odd. Life is a challenge. MS is just another. It's a pain and it stops you doing things you used to love doing but in reality it forces you to concentrate on other things instead. Like contributing to threads on forums :D
Your desire to improve life for those with MS is so clear ProfG and personally
I’m incredibly grateful.
As a mum to a child with MS I recognise those stages as a relative. He’s actually coped with the diagnosis better than me. I can add guilt and sense of responsibility to that list as a parent. We are told the future is vastly different to that one painted by the stats yet also recognise there are so many gaps in knowledge and treatment and it isn’t at all clear what the path will be. This sense of the unknown makes coming to terms with the diagnosis much harder than I expected. It is so hard to find peace and acceptance when you don’t know what you are trying to accept. Hope isn’t an easy emotion to maintain.
Is it denial if you avoid thinking about MS but do everything you are supposed to do (i.e. take DMT, have blood regularly checked + MRIs)? I was diagnosed whilst in the process of divorce, with three young children, one of which is on the spectrum. After a period of quite a lot of anxiety, I started on tecfidera. Thankfully, I am tolerating this DMT really well but I have no idea if it works. Repeat MRI is in a few weeks. However, I realised that I don't think about MS as much as I did when I was first diagnosed. I try to get on with life, work, my children and follow my treatment. I stop myself from thinking how bad it can get and what will happen to me, my children, my job. I don't know if this is denial or trying to survive (mentally at least).
Bravo Prof G for being understanding and exploring this! Thank you! I would just expand or (perhaps educate) that it may be more accurate to say that many MSers also go through the stages of grieving, to some degree, with each functional loss (which is often with every major relapse). That has been the case for me with MS, and that is how it is often communicated online in the many MS-patient spaces out there by MSer, because MSers must essentially "redefine" themselves *within* these new functional parameters again; it might be a mini-version of the stages of grieving that one goes through at onset and at SPMS, but they go through it all the same, as I have many times. The bigger the loss, the closer it is to full blown grieving again, though I've seen some with very minor functional losses go through it too. And, this is not delayed or unprocessed grief, the folks that report this are many years in, have already been to counseling, psychiatry, and have often been given a clean bill of thriving and "coping very well," as has been my case; having more functional loss (relapse) sets it off again regardless, just in a smaller way, until we get to be pros at frequently grieving (at least if relapses continue and for those that gather tools, supports, and do the hard work to face and deal with the new loss in healthy ways, and move on from it). Grieving is not something an MSer is ever really completely done with (yet), as long as they continue to accrue functional loss and have to redefine their understanding of themselves and their limitations; we rather get reprieves from it, some longer than others (though one day hopefully this will change). Some even experience grieving periodically in the absence of relapse, due to the brain thinking there's things we *should* be able to do (based on memory of old bodily parameters, which the brain continually draws from to inform know-how on performing new actions); but, we have a body/brain that no longer *conforms* to, or can *comply* by those parameters. Those that collected good coping tools and strategies have to continually remind themselves of this, to avoid unnecessary extra grieving, interestingly.
I often say that with MS you are constantly on the stages of acceptance. You get diagnosed, you get to grips with it and then another event happens and you need to deal with each stage related to that new episode. Recently I saw a video of myself dancing (ballet) and was so disappointed with myself that it wasn't how I thought I was, I looked "disabled" and I found that really hard. I knew my balance was poor and I had a bit of a clonky walk but this brought it home. So I will keep doing it but just avoid the camera and think that I am doing it like I used to. Denial, as long as I can't see it then I am OK.
Well said Prof as can relate to all those comments. Having still trouble in accepting, though realise that the situation of SPMS that I am entering will not go away anytime soon. Believe that smouldering MS is the key to solving/curing this disease and probably won't be done in my time here (I'm 54), but you never know 😜😜. Was diagnosed in 99, so 22 years a veteran,but has not let my ambitions in life be thwarted to the extent that I lost hope. Okay, so I'm not playing golf on TV and representing my country, Probably wasn't good enough in the first place, but I've travelled and lived in foreign lands one of my goals, have two grown up Sons (19 & 21) and a lovely 15mth old daughter. Don't work anymore but have a wonderful caring wife who understands me ! So really life is not that bad just frustrating. Let's hope new trials deliver fresh hopes, but realistic ones, not ones that are sensationalised to create curative headlines.
Thanks for another very useful newsletter! I think I skipped the first 2 emotions, but I can identify with the others, particularly the anxiety and a fear of the future. It’s a fine balancing act between acceptance, realism and hope. The Ted Talk ‘A lover letter to realism in a time of grief’ was sent to me soon after diagnosis, and although it is not specific to MS, I found it very helpful in its exploration of acceptance of disability and the hope provided by medical research.
💯 agreed. My husband is sp ms, and unfortunately cognitive decline is one of his biggest problems although as you can imagine after having the disease for over 30 years the list is numerous. But the cognition issues means he's almost like someone with dementia. He forgets that we have come over the hurdle of having to use crutches and will wake up back at the "what will people think, I don't need them, I'm not disabled..." so the denial acceptance etc can be a daily issue! He will wake up with a "new" issue everyday but actually it is not a new issue he's probably had it for over 15 years. MS is awful and I'm afraid in the UK well atleast the Leicestershire area as he was told this year, you have progressed so far there's nothing a neurologist can do so you won't be seeing one anymore, the MS nurse is at the end of the phone if you need them.😔
My first MS episode was diagnosed in 2008 as Transverse Myelitis (and a one off demyelinating episode). Biggest and worst I have ever had. A good year to fully recover and I was in denial it would ever happen again. I was in Auckland Hospital and the MS Nurse was talking about being peg-fed and my mind was screaming, 'Yeah, but that's not going to be me!' Skip 6 years, two more small episodes, UK Neurologist diagnoses MS. Brain screaming, 'THIS STILL ISN'T ME! I am special! I evaded this once, I will show you all!' Denial. Denial. Walked out of her consulting room and slid down the wall sobbing. No understatement, GRIEF. Family, (apart from Sister, who is medical and was with me in NZ for the first episode and rehabilitation) didn't get it. Denial, denial. Husband, just like me, 'Yeah but you are different'. None of my family read anything about MS, or want to know. I am not only any DMT's. I've had a baby since (fatigue and brain fog are standard). I am not sure what this says about me and my family.... I think we are all stuck in the denial phase over a decade on.
I agree with your analysis of MS and its affect upon the patient as well as their hopes and aspirations.
For me the problems really hit home at medical retirement and maybe started a few years before that date. The biggest help for me when employment turned into history was counselling but there was a bit of trial and error before I found someone who would engage in a 2 way conversation. The conversations stayed in the counselling room but the process really cleared my head. The elephant in the room was huge but after 18 months it had shrunk to the size of a dog. Now the emotional baggage became more manageable and I could get on with my life once again..
You don't mention counselling but I thought it was worth a mention, I did have to pay for it myself but I do not begrudge the cost.
Anxiety is really nasty - like a worm inside you, twisting away. Mine, thankfully, is largely in the past, and was helped by being able to recognise it through counselling and wise friends. I was shown that the process of 'catastrophising' would kick in the moment something unexpected happened with an MS symptom. Judgement would disappear and the worm of anxiety would start. The biggest helps were a) getting prompt help/support from the MS team and b) exercise. Knowing it could all come back if circumstances change makes you ever-vigilant. I suppose that's resilience!
Ist unrelated point- I usually give charitable contributions this time of year but don’t find any for the MS Selfie. I am reluctant to sign up as a “member” because I don’t want to obligate myself for future payments. But I’d love to give a donation. If so, can it be taken on line from the US, and might The Selfie “go through the hoops” to become a charitable organization for tax purposes?
On to my comment- This is “cutting edge” stuff, in my opinion, that is central to both the MS Experience, and making an effective plan. It needs to have its own heading within the Doctor’s categories. More important even, than hearing about DMTs. Unlike other illnesses, this illness allows one to continue on for a long time regardless of the choices non-choices they make. The consequences of those choices are not felt for a long time and are not reversible. Denial and misinformation is probably, more often, a serious mistake.
Denial is personal to me because of my training and practice as a psychologist (as I acquired MS). I “know” denial. The ways a person has “gotten by” in life, the self-explanations they have for their successes even when totally inaccurate, those things will get firmly in the way of recognizing the need for, and planning for, change. And those things can run solidly deep into one’s personality, making one unable to budge.
Ross’s stages are one way of talking about issues, but the stages are all barriers to arriving at the truth, and then moving forward. I would add “Superstitious Learning” (eluded to above) as a major barrier. I used to teach it to my undergrads, because it is easily visually remembered “If you have a lab duck, and the duck happens to be hungry, standing on one leg and you feed it, it will forever stand on one leg when it is hungry”. (Then you can go back to that example when teaching other stuff and ask students, “Are you a duck standing on one leg?” In other words, does what you are planning to do, have any actual chance for success? Or are you operating solely on past luck, chance and coincidence?
This is what I see frequently on the internet- people making totally false assumptions and real time conclusions about what is working or not working for their MS as they think it is. They need some real coaching early on in their prognosis on how to deal with their illness, and I don’t think many at all get that. Then they waste 5 years and come on a blog, clearly feeling hopless wondering what is wrong, and they are given further misinformation. It’s tragic.
I was diagnosed before DMTs and I was at a University. I read up on what I could. My course was not guaranteed and there was no consensus, but perhaps only for the Swank Diet, which I did in earnest. I had my amalgams removed. Then Betaseron came out, and there was no choice. If you wanted a better chance, they said, do this injection every other day. So we did it, I did it for 23 years. It was a simple choice with no complaints.
I think you described the emotional stages perfectly!