The Kingdom of the Sick

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By Rachel Horne

For all of us with multiple sclerosis, our story is the same. 

One day we got sick and we never got better.

Instead we were plunged into the strange hinterland of chronic illness – located between a headache and terminal cancer – where our disease won’t kill us, but it will never go away; where we will undergo treatments, but never a cure – and where we will always be a patient. 

In her seminal essay Illness as Metaphor, Susan Sontag describes this transition. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick…  sooner or later each of us is obliged… to identify ourselves as citizens of that other place.” 

The writer Nancy Mairs, who had MS for more than 40 years, is more succinct, calling it in her book Waist-High in the World – “a country to which no one travels willingly.” 

It is a crossing more of us are taking. Dramatic improvements in public health and the widespread use of antibiotics and vaccinations have meant fewer people are dying younger  (data from ONS) – which means more of us are living longer with chronic, life-altering diseases such as MS. 

And our MS lives are better and more ‘normal’ than ever before – thanks to earlier diagnoses and a host of effective disease-modifying treatments. We stay in careers, have children and raise families. Remember it wasn’t so long ago young women with MS were emphatically told not to have children as it would cause greater disability. Now we know this is not true (Dobson et al. BMJ 2019).

Yet one could argue the experience of living with a permanent illness is poorly understood and little discussed. It has even been neglected by philosophers due to its “unwelcome and demanding” nature, writes UK philosopher Havi Carel in the Phenomenology of Illness. This, she believes, should be rectified as the study of  illness sheds light on ethics, political philosophy, and human experience.

So what is the experience of permanent illness like?

Physical and mental

For one thing, the mental part can be just as difficult as the physical. People with MS not only endure a raft of bodily symptoms, but also mental ones that remain long after the disease has been controlled. 

“In cases of illnesses such as MS, patients must live a lifetime of uncertainty, anticipating what may or may not come next – a state called ‘limbo state’ loss,” says Mila Tecala, a grief and loss counsellor in Washington DC. “And most people don’t handle the limbo state loss well for a long time.” 

Having MS also dramatically increases the risk of depression, according to the American Academy of Neurology. Part of this extra risk comes from MS damaging nerves in the brain, and part comes from the experience of living with a complex disease. 

Relationships

Relationships change. With MS you are likely to take time off work, cancel arrangements at the last minute and be overwhelmed with symptoms like fatigue – which makes it impossible to be the same employee, friend, partner and parent you used to be. Some relationships end while some become stronger – as you find your true support network.

But, it’s the relationship with yourself that undergoes the greatest shift. Suddenly you are confronted with an image of yourself that no longer exists, while long-held goals and plans are overturned. Gradually a ‘new’ version of you emerges – but that takes time.

Doubt

The rules change when you are diagnosed with a life-long illness. You become, as the Canadian sociologist Erving Goffman wrote, stigmatised – an outsider in the world of the healthy: an object of pity, fascination and even doubt. 

“To be ill is to be suspect,” says Katie Willard Virant, a psychotherapist in Missouri. “What did you do you cause your illness? What aren’t you doing to cure it?”

For example, how many times have you been told with MS “But you look so well!”? At its best, this statement is dismissive of the myriad of symptoms you may be experiencing inside – the pain, the fatigue, the vertigo. At its worst, it implies you are not actually ill, because you don’t look it – ie no wheelchair.

This chimes with Barbara Stensland, the MS blogger and author of Stumbling in Flats. After her MS diagnosis, she was surprised and hurt by the reaction of the parents on her son’s rugby team. Despite being a single mother and struggling with bone-crushing fatigue, dodgy balance and wonky hands, no one asked if she wanted help. 

By comparison, another mother was diagnosed with breast cancer at the same time and was overwhelmed with support. Stensland’s conclusion: “There is an illness hierarchy and MS languishes somewhere near the bottom.”

Advice

We discover people are keen to give us advice on how to heal our disease. Over the years I have been urged to try yoga, acupuncture, positive thinking, a diet free from (fill in the latest fad) through to a faecal transplant as a way to fix my MS.

When I reply that MS is an incredibly complicated disease (the word ‘multiple’ is apt in more ways than one), and I am happy with my neurologist’s treatment plan, some become quite insistent they are right. So please – no more unsolicited advice. Which leads me to… 

Support

Having a chronic disease like MS can be very lonely. While those around you try their best, it is so valuable to connect with fellow MSers who intimately know what it is like to be permanently sick. They will also answer questions, connect you with other resources – and provide you with a safe stigma-free space.

Living with a chronic illness does make every day more difficult. Sontag aptly described it as “a more onerous citizenship.” And given the chance, I would return to the kingdom of the well – a place I happily resided in for 43 years – in a heartbeat. But that likely will not happen. So instead I take each day as it comes – and appreciate it all the more. 

Rachel Horne is a journalist who has MS

About the author

Rachel Horne

64 comments

  • I love your article. So articulate and such a true representation. I’ve had ‘my’ MS for 21 years now, but I’ve only been permanently wheelchair living since 2016, i.e. I’ve only had a manifestly visible sign of disability since 2016. Not only does the wheelchair massively assist me physically and by default mentally. But its presence has made every 3rd party that I (visibly), interact with, understand, and accept there is something wrong with me. Immediate family and close friends are of course excepted, (to a degree), albeit some still believe there is a cure under a rock that I’ve not overturned. It’s bonkers but true, and I suspect I reacted the same with other peoples illnesses before I got mine. I’ve certainly been taught patience and tolerance.

    • So interested in your comments… especially re the wheelchair – and the switch to being “visibly” disabled – and the reactions of those around (more accepting). As for patience and tolerance, I hope I too have learned a bit more of both.

  • Rachel,

    “Instead we were plunged into the strange hinterland of chronic illness – located between a headache and terminal cancer – where our disease won’t kill us, but it will never go away; where we will undergo treatments, but never a cure – and where we will always be a patient.”

    This is a lovely summary. My main issue with MS is that I was never given a second chance – it was bam, out of the blue, old life gone forever. It’s 6,053 days since the consultant told me it was MS and that I’d need a second attack before I was entitled to a DMT. I don’t believe the MS doctors can really appreciate what it feels like ie to know that you are going to wake up every day with a disease that will get worse over time. I’ve had friends / relatives with chronic disease, but the diseases have been limited to one organ or function. It’s the scale of MS ie the fact that can impact on the whole body / all functions that’s the real killer.

    • On the button… I think it is the sheer scope of MS that is so daunting. For me, I fear more of the mental decline rather than the physical whereas when I was first diagnosed it was the opposite. But back then, I knew v little of the disease. Thanks for your kind comments.

  • I’m one of those who was told not to have anymore children after being DX shortly after the birth of my first child 27 years ago. I also had to take early retirement aged 33 from a career I loved because I couldn’t walk & was unable to get into my workplace. The dark ages of no MS treatments, no information, no internet, no mobile phones.
    It has been so wonderful to see how things have progressed ( for the better). Aggressive MS treatment drugs now mean newly DX can stay in their careers and avoid the permanent disability that was inevitable for me.
    I no longer worry that I may have passed on the MS genes to my children because I see so many younger people with MS living full lives without constant MS attacks. Research is a wonderful thing.

    • Absolutely re research – but I am so sorry you were told this all those years ago – re children. Stay safe,
      Rachel

    • I am so sorry to hear this… but, like you, I am cheered by all the research and the options available to someone being diagnosed today. There have truly been vast improvements – and I am grateful to all those researchers out there who had made it possible.

  • My thoughts and sentiments are very close to what you have written. I have missed the boat for any significant treatments and now it is a case of watching the tide come in whilst being marooned on a rock Can’t swim, can’t walk just gotta wait for a lifeboat

  • Love this, you really summed up my feelings perfectly and expressed so eloquently what I have struggled to put into words 🙂 Hope all is well! Suk

  • Wonderfully and aptly written account of the “Invisible MS” that is shared with me by most of the pwMS (MS warriors).
    I am a MS Neurologist.
    If you permit, can I share this article with my cohort of MS warriors.

  • I was 53 at diagnosis, feeling as has been described. In my bubble, looking out at the healthy world. Now, 17 years on, the majority of my contemporaries have health issues. Cancers, heart, beginning of alzheimer’s etc. None of it (so far) puts them in the terminally ill category but like me, they are now in a cycle of appointments, prescriptions and overall uncertainty. It doesn’t make having MS any better, but I do feel more connected with people my age. Friends are having to begin learning the coping strategies that we have honed over the years!

    • Really well put. I was 43 when diagnosed – and felt very much alone. Eleven years later, friends are beginning to have health issues and scares – and I know exactly how they feel. The panic – followed by the coping. Best, Rachel

  • As I get older, I realise that almost everybody eventually moves out of the ‘kingdom of the well’
    Many or most people are dealing with health problems, some more serious than others

    Añt the moment, my most disabling health problem is not MS but chronic migraine. Of course, the MS is likely to become worse as time goes by

  • Thank you Rachel for being a voice for us in this, knowing how to put into words what it feels like and getting it a cross to others.

    • Thanks so much for everyone’s kind response. It is so reassuring to know there are others out there who feel as I do… it can be quite a lonely road we are forced to take.

  • Rachel – such a beautifully composed, compact article that packs in the reality of living with MS and struck me to the core. “But you look so well……” how often did I hear those words of disbelief as I tried to explain away the creeping fog in the workplace, irrational anxiety, the dodgy walking (and falling) not to mention the eyes (double vision). Sadly no longer as the leopard walking stick became a permanent fixture, the grab rails went up and the wheelchair packs in behind the door. I’ve been living with MS since the day in 1991 when Robert Maxwell ‘fell’ from his boat (literally – I woke to hear the news with a strange numbness down one side). RRMS became a permanent SPMS diagnosis in 2016 and I’m on the downward slide. It’s pants as my only sibling, my sister who lives with PPMS, says. Barbara Stensland is right, there is an illness hierarchy and now as the world grapples with the Covid-19 global pandemic we must, understandably, sit patiently as research expenditure budgets are cut and clinical trials adjust. One day our time will come. We have to live in hope, as you say appreciate each day as it comes. Otherwise where do we go from here?

    • Thank you for your words… and yes, I agree with Barbara S and you – there is definitely an illness hierarchy. It’s too bad MS is at the bottom of it.

  • I am a citizen of upstairs, because that is where the bathroom is and because what used to be my good leg deems the stairs too difficult right now.

    No doubt I will be released at some point, doubling my world to two floors.

    Hooray something to look forward to.

    • So sorry to hear this – and hope you can make the trip downstairs soon. Pre-MS, I could have never contemplated what this would have felt like… now I know.
      Best,
      Rachel

  • Thank you Rachel, I have forwarded this to family to perhaps give them a little insight. Just what would have liked to say if I had such a way with words

  • Thankyou Rachel
    Thankyou for being able to do eloquently talk about how I feel.
    25 years since I started noticing symptoms.

    Where can I find you in social?
    Bron

    • I haven’t yet made it to social media, but am thinking about starting up on this weekend. Will let you know…. and thank you for your kind words. So often I think I am the only one feeling this way – or the only one who is always hesitant to plan things far in advance… because you never know…

  • My neurologist possibily assumed that as I have MS, I would be at home during total lockdown.
    No, I worked and still work full-time – over 40 hours a week and front line.

  • I’m the partner of an MS sufferer, she shared this blog with me, it echoes so many things I have witnessed in my wife and her feelings.
    I have myself been guilty occasionally of thinking to myself, “but you look fine, and your getting on so well”, when inside I know my wife is just about keeping upright
    Also I’ve begun to see just how lonely it is being an MS sufferer, I’ll be there for her always but she’s the one with the MS not me and there’s only so much of the burden I can help her with.
    Thanks for an insight from an MS sufferer’s view.

    • Thanks for writing in. It also made me realise that I have been remiss in not saluting all those unsung heroes who are partners of people with MS. Yes, the disease is awful… but caring/looking out for someone can be physically and emotionally very demanding. It also means a huge adjustment – and possibly shattered dreams and ambitions for the partner – not just the person with MS.

  • What a wonderful blog and soOoooo right on!!! So many times my friends and even my family look at me and say, “well you don’t LOOK sick!” They have absolutely NO IDEA what I’m going through… nor do they particularly care. They are all caught up in their busy lives that they don’t have the time to even acknowledge the kind of HE’LL I’m going through. Some day, however, they too may be in shoes like mine and their attitude will change. Until then I struggle along and pray for those who are afflicted like me and hope that they may find peace in their soul.

  • Thank you Rachel for putting into words what everyone with a diagnosis of MS will go through, it’s quite a heartbreaking experience but one none of us will avoid 😢 As we learn to live with the new version of ourselves so too must others around us but it seems they find this transition the most difficult to accept, which makes our journey of transition even harder! Thankfully people no longer have to undergo the bluntness and cold hearted diagnosis that I underwent back in 1997. 😡 Today’s Neurologists have greater understanding and certainly more compassion and empathy towards someone they’ve just told they have a chronic illness. 🥰 I was told “you have multiple sclerosis but not everyone is blind, incontinent and wheelchair bound so go home and get on with life”, they wouldn’t get away with this these days! 🤔 Bearing in my mind my only knowledge of MS at this time was a 63 year old gentleman I used to nurse in a care home, he was paralysed and we used to have do everything for him and turn him every hour to prevent bedsores……. I thought my world had just ended with that diagnosis. 😭However, I was determined to stay strong 💪 and do my research 📚 I soon learned everything there was to know about my new lifelong buddy and after a period of depression I soon learned to get along with life and my new buddy; MS. 😊 I can’t count the amount of times people have said to me “you look well, are you’re sure you have MS?” 🤷‍♀️ Neither can count that amount of disapproving looks I get when I park my car in a Disabled Car Parking Space, from those members of the public that think to have a disability you have to wheelchair bound 😢 Thankfully as MS Warriors we learn to live with our buddy MS, if only everyone else could too, life would be so much better! x💖x

    • What a wonderful posting… I also made the decision not to” fight” my MS – because I figured my body had enough to contend with. And I understand what you are saying re Disabled Parking Spaces… that look!

  • What a strong and valuable article. It breaks my heart when someone posts on the MS sites, that they are newly diagnosed. They want so badly for you to tell them that their daily lifes, relationships and careers are not going to change but you know differently. All you can do is reassure them that everyone is different and one day at a time. I’ve been dealing with MS for over 12 years. The day i was told it was MS was a horrible day. My husband is a Cardiologist and refused to accept the diagnosis. He yelled at me and the Radiologist that read my film (MRI). When the Radiologist said my MRI was textbook MS, I replied because of my symptoms, “that makes sense.” My husband said, “Whats wrong with you, do you want to have MS? ” For a longtime ,he insisted I see a number of different neurologist. But he continued to make me feel like there was something I could do or did to bring this on and he’s a doctor. Nobody can understand but us! ♥️

    • This is so true – re the newly diagnosed. I think it is a bit like parenting… everyone tells you life as you know it is going to change dramatically – but you don’t believe them. And then over time you do.
      I am sorry re your husband’s insistence you didn’t have MS. I suppose he was incredibly scared? Like you, I almost was relieved on hearing I had MS. I had a diagnosis that explained so many things. And it could have been worse… Take care.

  • thank you ,my wife has MS and was diagnosed just over 3 years ago at 70 ,you have helped me understand this other life more stay safe

    • I’m sorry to hear this about your wife – such a blow at this time of life. Hope the both of you stay as well as you can during this time.

      • Thank you for you’re thoughts ,after reading your article I can now see my wife was suffering with MS for a long time but we never knew ,it was an operation on her back that brought it to light ,after witch we were having little or no medical support .we then moved to a small bungalow so we could manage better ,I found the York MS run my Tony what a help and the doctor we have now is marvellous ,I would love to name her but better not I tell her every time we see her how grateful we are ,the good days we enjoy the not so good ones we remember good memories thank you again

        • I’m so pleased you have finally found the help and support you need… it makes such a difference. Stay well – and try not to overheat!

  • Rachel, I sent your beautiful, eloquent article to members of my family and the phone calls from them came quickly stating that they had no idea how I felt (I’ve had MS for 24 years) they almost said but ‘you look so well’ but checked themselves. Thank you for putting into words what I couldn’t.

  • Thank you Rachel, I have shared your article with my family, It bought tears to their eyes as they had no idea how I felt and I didn’t have the words (I’ve had MS for 24 years). Reading your article validated my feelings in regard to this illness, especially the loneliness and the dietary advice which I almost get given daily even though I eat a healthy diet. Please continue your writing, you have the gift

    • You are very kind… I had no idea the piece would touch as many people as it seems to have. Yes – I get the loneliness – as for the dietary advice – I, too, get a little weary of that. Take care.

  • What you have written is so true. Thank you for validating my experience living with scleroderma, another invisible and complicated autoimmune disease. It’s amazing how knowing it’s not just you that feels this way reduces the sense of isolation.

    • Thank you for leaving your comment. When I was writing the piece, I kept on wondering if I was shooting in the dark – Was it just me who felt like this? Think there are so many millions of people out there who face being a permanent patient… and it can even be more diminishing when it is so-called invisible to everyone else, but us. Take care.

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