Guest Post: Language and MS: Why Our Words and Stories Matter

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Question. Those with multiple sclerosis: do you remember the exact words your neurologist used to break the news of your diagnosis?


And those on the other side: MS neurologists and health professionals. Can you recall the most difficult conversation you’ve had with someone with MS and the words you used?


Thought so.


Words matter in medicine – especially with a disease like multiple sclerosis where the impact on quality of life can be catastrophic and the emotional component runs so high.


Words can also be inadequate. How does one describe pain? Or weakness? Or how does one, as a health practitioner, offer words of hope when there is almost none?


And words change  – depending on time and shifting sensitivities. Take the word ‘disease’. Before typing it out – five sentences earlier – I paused. Was it the most appropriate word to describe MS? Neurologists overwhelmingly use the term disease, but the NHS and three UK charities – the MS Society the MS Trust and Shift.ms – prefer ‘condition’ to describe MS.


“We tend to avoid the words illness and disease as we think condition is less aggressive and negative,” says Janice Sykes, Information Officer at the MS Trust, a UK charity. Miranda Olding, a Clinical Nurse Specialist in MS, also calls MS a condition though she concedes at her therapy centre “we do talk a lot about disease-modifying treatments.” She also uses words like inflammation and lesion, but avoids ‘scarring’.


There is also the semantic quandary of how best to describe someone with MS. In 2016 David Baker, Professor of Neuroimmunology at Barts and the London, looked at how people with MS preferred to be referred to in scientific publications – compared to what academics called them. After analysing three surveys, Baker and his colleagues found those with MS liked the descriptor ‘person with MS’ (pwMS) followed by MSer. Academics, by contrast, generally used the term ‘patient’ – which those with MS found to be outdated and paternalistic.


I get this. However when you go on the internet, it seems a very different story. People don’t just ‘have’ MS these days. Instead they call themselves ‘MS survivor,’ a ‘MS warrior’ or a ‘MS hero’. War and violence metaphors are freely appropriated. Those with MS are ‘standing up’ to it, ‘battling’ it or even single-handedly ‘slaying the MS Monster.’  


This notion of ‘fighting disease’ is not new. In the mid-seventeenth century, the famous British physician Thomas Sydenham introduced the concept into western medicine when he declared that a “murderous array of disease has to be fought against, and the battle is not a battle for the sluggard.”  

Thomas Sydenham by Mary Beale

In recent years, however, the linkage of military language to MS has grown. Does anybody in the MS world wince when there is talk of the immune cells ‘attacking the myelin sheath’ or mention is made of ‘breaching the blood brain barrier’? No. We accept this terminology without questioning its adversarial tone or wondering if such words are, in fact, suitable when it comes to medicine and healing.

Not surprisingly, the press, policy makers and charities have adopted these combat metaphors. They’re effective and highly motivating. A few months ago, for example, the National MS Society launched its ‘Whatever it Takes‘ campaign featuring posters – in stark black and white – of those with MS. Underneath are taglines: “MS broke my body. I will never stop, never quit,” says Kevin diagnosed in 1999. Or there is Yvette, in boxing gloves: “MS causes debilitating fatigue. I will knockout MS.”


Personally I find this tie-in between fighting and MS uncomfortable. Does this mean from the moment you are diagnosed you should enter the metaphorical boxing ring or the theatre of war and launch an all-out assault against MS? Isn’t coping with a serious chronic disease enough? And what happens if you ‘lose’ the fight against MS?


Others with MS have taken a very different tack when it comes to describing themselves. In her seminal essay “On Being a Cripple” (links to a PDF) Nancy Mairs defiantly labels herself a cripple – saying it accurately reflects her reality.


Mairs acknowledges this might make people wince, but “perhaps I want them to wince. I want them to see me as a tough customer, one to whom the fates/gods/viruses have not been kind, but who can face the brutal truth of her existence squarely. As a cripple, I swagger.”


Mairs also wants to be honest: “Cripple seems to me a clean word, straightforward and precise… As a lover of words, I like the accuracy with which it describes my condition: I have lost the full use of my limbs. ‘Disabled,’ by contrast, suggests any incapacity, physical or mental. And I certainly donʼt like ‘handicapped,’ which implies that I have deliberately been put at a disadvantage, by whom I canʼt imagine (my God is not a Handicapper General)…”

Nancy Mairs in 1986, by Jim Hepworth.Credn b


Along with the rise of MSers fashioning their own labels, there has also been a huge increase in the number of people writing their own MS personal stories. Go online and you will find dozens, if not hundreds, of blogs focusing on symptoms, treatment options and the challenges of living with MS.

The rise of the internet has made this largely possible. But I also believe the democratisation of medicine has played a role. Until recently physicians were pretty much the only ones writing patient’s stories or ‘illness narratives’, according to Mike Bury in his essay “Illness narratives: fact or fiction?.


Before the rise of bio-medicine in the mid to late 19th century, Bury writes, great emphasis was placed on a doctor taking a detailed history of their (usually upper class) patient – asking questions about circumstances, environment and even moral beliefs. From this they would come up with a diagnosis and treatment. To be honest, they didn’t have much else in their doctor’s bag. Understanding of anatomy and physiology was basic; physical examinations were, at best, rudimentary. Story was everything.


The advent of scientific medicine and the growth of modern hospitals and laboratories changed all this. Emphasis switched away from the patient’s experience to biological causes of illness. Blood tests replaced blood letting. In recent years, however, there has been a shift away from this medical model, Bury says. He cites several reasons: the rise in chronic diseases, the huge expansion of medical information and the shift to holistic, patient-based care. These days patients are reclaiming ownership of their bodies – and their stories.


Sociologist Arthur Frank applauds such a move. In his influential book, The Wounded Storyteller, Frank says stories written by the ‘wounded’ allow them to gain control over their illness, accept it and reflect on how it has shaped them. “Stories are a way of redrawing maps and finding destinations,” he writes. They are also key to helping – and healing – others in a similar situation. “As wounded, people may be cared for, but as storytellers, they care for others.”


Nobody understands this better than George Pepper, Co-founder and Chief Executive of Shift.ms. Told at the age of 22 he had MS, Pepper found it difficult to meet others in a similar situation: young, recently diagnosed and struggling to accept they had a life-long condition. So in 2009 with the help of friends, he set up the web-based charity and social network Shift.ms.


What makes Shift.ms unique is that it’s ‘user-led’ meaning its 17,000 members (and growing) supply and drive its content. A large chunk of the site is dedicated to members explaining how MS affects them: from their diagnosis, to their fears and onto the impact it has on relationships, families and career. “Every person with MS has a story to tell, and by telling it, it helps other understand they are not alone,” says Pepper.


The MS Trust reports a similar situation. In 2011, it set up a ‘Your Stories’ section on their website. Last year the pages received about 3-4,000 views per month. That figure is looking to double this year. “There has definitely been a shift in people looking to fellow MS peers to help put things into context,” says Sykes.


I understand. Even with the best will in the world – and there is much out there – doctors and health professionals can not perform this service. It is the actual act of writing one’s own MS story that can be empowering and cathartic; a way of shaping the chaos that surrounds a disease so unpredictable as MS.


And this holds true, I believe, no matter who tells the story, from where or what time.  A case in point is Sir Augustus d’Este – the illegal grandson of King George III – and the earliest recorded person with MS. Starting in 1822 – when he first experienced blurred vision – until 1846, d’Este kept a diary detailing his symptoms and treatments which included leeching, ‘electrification’ and orders to “eat beef steaks twice a day, drink London Porter, Sherry and Madeira wines.”

Sir Augustus d’Este as a boy (it is ‘possibly’ d’Este, not confirmed) V&A collection


Reading a copy of the diary today is terribly poignant. Obviously the style is different, but what shines through is how similar d’Este’s experience with MS was – more than one hundred and seventy years ago – compared to today. We read of his bewilderment with his growing symptoms, his pleasure when they (temporarily) abate; his attempts to find a cure and his disappointment when they don’t work. And we can not fail to be cheered by his optimism – even when he progresses from stick, to his “chair on wheels” then finally to bed. What makes it all the more poignant is knowing, that it is unlikely d’Este will get the happy ending he wants and that we want for him.


Words and stories matter especially in MS. Sometimes they may not be the exact words we want to hear – or the stories may have a different closing than we would wish. But the importance is that we have them.


By Rachel Horne


Rachel is a journalist interested in health and women’s issues. She has an Hons BA from McGill University and a Masters from Columbia University School of Journalism. Previously she covered international news in China and financial news for CNN in London. She has MS.

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Rachel Horne

36 comments

  • "d’Este kept a diary detailing his symptoms and treatments which included leeching, ‘electrification’ and orders to “eat beef steaks twice a day, drink London Porter, Sherry and Madeira wines.”

    Ahh..hilarious steak and sherry diet to cure ms just like today we
    have Terry Wahls and her silly multi-colored vegetable diet.
    "Leeching and electricity" and today some spout off about exercise and meditation/attitude. Until cure is in..we have not advanced one single bit. And don't be silly.. alemtuzamab/ocevus is not a cure.

  • Bredrin, this be the most well written post to ever feature on this blog. You ought to have shelled out some De Niros for it.

    RIP to sister Franklin.

  • My postman gave me my diagnosis. I had received a copy of the neurologist's report addressed to my GP following an mri. I was home alone and very unwell when I opened it. I was upset and didn't know what to do so I phoned the Neurology Department, they said, 'Well, you knew it was on the cards'. Indeed. The Stroke Dept had misdiagnosed me twice and it was when they realised their mistake that doctor said 'It could be ms, I don't know much about it, but it is a better diagnosis'. In my experience I would say that the manner in which we receive our diagnosis is a very important issue.

    • I am so sorry to hear this. When I was doing research for this piece, I did hear a story about someone being told they had MS over the phone from their neuro. That was bad enough… but to find out through the mail – absolutely appalling. Agree that the manner in which we are told of our diagnosis is a key issue… and is there a right way?

    • When I was close to giving birth the first time I attended antenatal at the hospital. I had been there for a few hours and was keen to get home to rest. A nurse came into my cubicle and I asked her if I could go home. She rolled her eyes and left whipping the curtain closed as she went. There was another patient's relative sitting in the corridor just outside, I heard the nurse say sharply to her, ' I don't believe it she has pre-eclampsia and wants to go home'. That was the first I heard about it. I hadn't been told.
      Staff seem too busy to stop and take the time to talk to patients. I don't know what the answer is but this lack of compassion and common decency can make an already difficult time a traumatic one, health professionals would do well to bear this in mind, what is just in a day's work for them could be a life changing moment for their patient.

    • I found out over the phone; I'd rather that than have to wait weeks to be seen again to be told in person. It was eating away at me, and I view that phone call as a kindness that put me out of my misery, so to speak. I had an answer, I could make plans, and since he was on the phone I could ask some questions.

      Learning via mail, however, seems needlessly callous.

    • Re- phone call. Thx for pointing this out. I had not factored in the long wait time between appointments when I wrote my comment. Like you, I would have found it very difficult to wait weeks for a definitive diagnosis.

  • Rachel, Thank you for your words. Stories from MSers also have a motivating effect on me. As a researcher trying to understand the link between MS and viruses (EBV, in particular), life at the bench can be very frustrating–when experiments fail, for example. That frustration, however, is _nothing_ in comparison to the frustration MSers go through. But the stories help keep me focused on moving forward. I am not doing research for the sake of science, to publish another paper, and add to my CV. Rather, I want to have a real impact on the lives of people.

    This is one reason I appreciate this blog. Gavin and others at BART do a good job of bridging that gap between scientists and patients.

    • Thanks very much for pointing the book out and the link. I have just read a v good summary piece on the MS Trust about him, his diary and his death at 29 from MS. Know it will be an excellent read – but might just wait for the right time to go through it.

  • Follow up appointment after MRI went like this:

    Neuro: Your scan is abnormal
    Me: I think I've got MS
    Neuro: So do I

    Ha! Got in first 😉

    Joking aside, neuro was one of those who'd forgotten all he learned at med school about how to talk to patients. Nearly every time I saw him he made me cry 🙁

  • I suspect the war-like terminology and the hero-type labels are much to do with how our societies work today and how we construct identity and "being special" in it. We find war-like terminology in more than one area where it does not belong originally. I am thinking of a country with a populist president I recently visited (no, not the US) where the discussion on the purposes of primary school education and the children's present and future place in (national) society is ull of such terminology. As regards the "heroes", this seems to be a label quickly given by the media today; as soon as anything happens somewhere, they are eager to find and declare a "hero". We all want to be the hero of our own story, developmental psychology and looking at mythology and folk tales shows us that. Everybody wants to be just that little bit special. Maybe, the six year old girl thinks, maybe I am a princess really and was mixed up with another child when given to my "parents". Having ms myself and not feeling comfortable regarding myself as a hero or survivor (I work with people who are survivors of severe violence), I sometimes think that the "hero" terminology perhaps also points to ms (and the struggles with it) having been turned from a "condition" or "disease" into something that is almost part of the person's identity, something they identify by. It follows that I myself prefer to be a person with ms, rather than an MSer. Too busy with interesting things in my life to give ms such a central role – but I realise I am lucky with my ms so far which hinders me little and allows me to do all those things. I believe there is no one correct way for a doctor to tell their patient that they have ms. Of course, there are tips, but most of all a doctor will need the sensitivity and interpersonal skills to know in which way to talk with that particular patient. My neuro is great at that. But my mother said the best thing ever just after I had been given my diagnosis. She said: Just remember, as a person, you are still the same that you were before. Runs in the family, that we regard illness as a condition which influences life to a smaller or greater extent, not as something that takes over our personalities.

  • After I had a (ignored for too long) bout of double vision I went to my optician. Obviously.
    He sent me to the hospital. Test test test followed test and LP. Steroids followed.
    I was told nothing.
    Later that year (2001) my GP told me: "Roger you have MS quite badly. You won't be in a wheelchair though."
    I had NO idea what MS was at that time!
    Now though, I'm quite well informed and
    happily involved in the MS community.
    Engineering long gone!
    Great post Rachel.
    Exercise IS key Asam.

  • After my MRI I pestered and pestered my neuro's PA and also my GP. My first clue was when I spoke over the phone to my GP who saw my results and told me I had scarring on my brain, but there was no diagnosis. A week later I saw my Neuro doctor where he confirmed I had MS, reassured me but more so my wife who was in floods of tears there were huge advancements in treatments and wrote down my options, and like Andy from Lou and Andy from little Britain, I pointed and said "I want that one" (Lemtrada).
    I know my GP maybe shouldn't of told me of the scars to the brain, but I was grateful at the time and it was my pestering that forced his hand.

    • Some really interesting comments here which raise a key point.
      How much do we want to know about our MS? At diagnosis and beyond, do we want our neuro to tell us everything – lesion load, where they are situated etc – or do we want to be told as little as possible? I know some people prefer the ignorance is bliss model – others want to know everything. And how does the neuro figure this out… ?

    • I know, I know… dumb question on my part. I guess I was trying to ask when is the best time for the neuro to find out how much his patient wants to know… formal diagnosis meeting or subsequent meetings.

    • Subsequent, definitely subsequent unless the patient absolutely presses – my diagnosis was a complete bolt from the blue, and I wouldn't have either heard or understood what was said. But I really do want to know now…..

  • Excellent examination of the importance of labels In the construction of meaning. I simply detest MS W warrior as a construct. The masculinisation of a female dominated disease reflects the denial involved in a macho approach towards living with the condition.

    Adam Bomb would like to characterise Dr Wahls as silly however variety and balance of all fruits and vegetables along zero processed foods will result in better health even if it does not cure MS – that’s not silly.

    • I also hate the MS warrior/hero construct, as I think it also leads to the general misconception that if your MS is bad, it's because you're just not trying hard enough.

      Much like the idea of "controlling" or "managing" your MS – I feel it's the opposite way round, the MS controls you, and you just go along with it, just like you can't "control" any disease.

  • Absolutely understand where you are coming from – re MS Warrior. It also seems – very broad generalisation coming – that in the US there is more emphasis on on fighting/beating disease. Think Nixon started it all (amongst other things) in 1971 when he declared A War on Cancer.

    • Fascinating, the battling v suffering terminology. Hadn't realised how the warrior term has now reached MS. I don't think it extends to the higher end of the EDSS and beyond the grave.

    • Just to explain what I meant by beyond the grave. 'She died after a long battle with cancer' v 'In later years he suffered MS'

  • Was having problems walking due to my right leg giving out. Went to see a Neuro, who did an exam and ordered an MRI. Was told it was not normal, but to come back in 6 months. Wouldn’t answer my question about scan not being normal. Unbelievable. Needless to say, I went and saw a different neurologist who took one look at the DVD with my MRI scan, and said “I think you might have MS, but we need to do a lumbar puncture and another MRI”.

  • Maybe in a similar way to you Maria, I was feeling fine, but I kept on falling over in the street. My wife told me to go to the doctor, rather than complain to Westminster Council about their pavements. The doctor sent me off for a scan and other tests.I spoke with the neurologist later, who said my doctor had asked him if I had MS. The neurologist then said he was going to write a letter back to the doctor and say yes I had MS. I thought fine, both doctors talking to each other. It was only later that I realised they were talking about me – it's me who has MS. The upshot is that I don't know when I started having MS. It could be twenty years prior to the MRI scan when I had some optical neuritis. And after I was diagnosed I was fine, but I walked slower, and started to support myself with a stick, and now for the past two years have used a mobility scooter. I still feel fine, but get more tired. I'd have been annoyed if my doctor had told me to just walk slower and use a stick, but that basically was my treatment for eight years after I was I diagnosed, and probably all that I needed.

  • Basically after expiriencing some very disturbing things i did MRI where diagnosis clearly was saying that i have MS. So i had to go to a local neurologist to confirm it which she did. It was as simple as that. She had no time for me so that confirmation literally took 1 min maximum.

  • I was initially diagnosed by a chiropractor using the old tried and true hot tub test. As soon as he mentioned the possibility of MS I knew it was true. Since that day I have felt like I am in a struggle for control of how I want to live my life. All things have been affected, from my relationship to my wife and kids to my financial situation and my ability to work. I do think of it as a struggle, a constant struggle to maintain as much physical capability as possible, maintain social relationships, stay abreast of the latest developments in MS, make rational decisions in a reasonable amount of time, plan for the possibility of a poor outcome while still hoping for the best. I suppose I prefer not to think of it as a battle or a war because if I did, I would have to admit to myself that I was losing.

By Rachel Horne

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