Vulnerability, a word for our times

Recently I took part in a clinical trial to help establish how my medication might affect the course of a Covid-19 infection. To start I needed to give a blood sample by pricking my finger and putting a few drops into a tiny vial. After reading the instructions and laying out the equipment, I pricked my finger and held it over the vial. The fine motor skills in my hands are not good. In one hand I have a condition called CRPS (complex regional pain syndrome), which means that my hand can be stiff and clumsy. My finger was bleeding, and the blood seemed to go everywhere, except into the vial. I kept shaking and squeezing my finger, and the result was more blood smeared around and a hurting finger. In the end yours truly – the woman who has had numerous operations and unpleasant hospital treatments, loves climbing some of the most difficult peaks in Alps, injects herself every week for years, – started crying. This meant that I couldn’t see what I was doing anymore. So I gave up.

What happened? Suddenly I had felt completely overwhelmed by this situation. I want to support medical research, but I felt crushed by this small event: a hopeless and helpless person with incurable conditions, who can’t even prick her finger.

Was my reaction in some way related to the pandemic? The suffering caused by the Corona virus, including the restrictions placed on my own life, is a misery. Was my crying related to these months of restrictions, the tiredness we are all feeling and the horror at the global suffering. The Coronavirus 2019-nCoV reminds us that nature is stronger than we are. It shows us that our efforts to control life and create certainties to make us feel safe, can disappear at any moment. That is a frightening thought.

I see parallels in the threats posed by living in the pandemic and with an incurable condition. In both cases my behaviour gives me a measure of control. I can reduce the risk from Covid-19 by following the recommendations to prevent infection. Careful self-management and taking my medication will probably keep my conditions under control. But there is no certainty in either case. Despite precautions I may still contact Covid-19, and even following medical advice my treatment may stop working as it did in 2017, or I may get another illness which endangers the existing therapy, as in 2019.

Both the pandemic and a disposition to chronic illness are expressions of the power of nature. They are best met with humility and respect. Given the current efforts, in a fairly short time science will find a way to both treat and prevent Covid-19 – normal life will return, and all will be ok – at least in rich countries like Switzerland. That’s not what most people affected by chronic diseases can expect. Our situation is not transitional. There is no light at the end of the tunnel with a vaccine. We are living on a knife edge all the time.

The word that comes into my head is vulnerability and that is what this blog is about: a reflection on what I think vulnerability is for me, how chronic conditions affects my relationship to it, and whether vulnerability is a good or bad thing for me as a patient.

According to Merrian-Webster dictionary vulnerability derives from the Latin verb vulnerare, meaning “to wound”. It means openness to attack or hurt, either physically emotionally, or mentally. In Wikipedia it “refers to the inability (of a system or a unit) to withstand the effects of a hostile environment.”

Vulnerability has so many different facets. It describes a deeply personal inner feeling, but also relationships to other people. In my inner world it starts with fear and dread about something, or maybe it’s uncertainty that overwhelms me and creates feelings of powerlessness. I feel that I’m loosing control, which make me feel defenceless, and acutely aware that I need help. That can lead to a sense of shame and pain, because I can’t manage, which leads to fear and dread…. and ends in a feeling of vulnerability. I can’t really separate cause and effect, it feels more like a circle of feelings which are deeply connected.

In my situation as a patient with chronic conditions, how people relate to me can crucially affect my vulnerability. A visit to the doctor may make me feel very vulnerable. Lots of the above factors come together. I’m going to the doctor to tell her or him about how the pain has been, or because I’m feeling ill, depressed or exhausted. I’ve come because I can’t help myself and don’t know what to do. To get help I must open myself up in the most intimate way. I tell my story, sometimes I take off my clothes and stand naked in front of her or him. Sometimes I am doing this with a person that I have never met before.

What if I do not feel empathy or interest from the person? What if the news is bad? I feel fear. If the solution seems quite simple, I’ve even felt shame for making a fuss, and on the occasions when I’ve been told that there is nothing wrong with me – except in my head – I felt misunderstood and very miserable. All in all, going to the doctor is never just a “consultation”, it always means much more. Sometimes relief, sometimes new uncertainly, more loss of control and those feelings of vulnerability come again.

Chronic disease means the loss of control and loss of health by definition. It can also mean stigma and shame. Who with chronic disease has not been confronted with the attitude that loss of health is a bit self-inflicted? “If you could only find the courage to stop your medication and follow this or that (quack) treatment, you would be cured…..bla, bla..” When people give me such advice, I wonder what moves them. Are they giving me something as an expression of compassion, or are they pushing something at me to keep me at a distance, because ill-health is a threat?

Chronic illness often leads to loss of self-esteem – not just because the chronically sick haven’t managed to keep healthy, but also because we sometimes don’t look good. We are fatigued, not always able to do things we want to. Perhaps we can no longer do the job we were trained to do, or are too tired or immobile or poor to go out and socialise, which leads to isolation, loneliness and depression, and thus even greater difficulty in finding or keeping friends. All other things being equal, chronic illness increases vulnerability.

My last reflection is whether vulnerability could have an upside. Can vulnerability help me as a patient, and be a source of strength? When I was diagnosed with Spondyloarthritis I sought the company of other sufferers through my patient organisation. I was struck by the way that some people had accepted their situation and were even thankful for it, and had integrated the condition into their being, rather than suppressed it.

I think this is what they did: If you have lost something important in your life, like being healthy, then you learn that you aren’t perfect and you never will be. If you know that limits beyond your control have been imposed and that you can’t do or have everything you want (although lifestyle coaches try to teach us that we can), then it’s also easier to be grateful for what you have and for every day when you have nothing to grumble about.

Acknowledging Spondyloarthritis means that I have to recognise my imperfection and learn to accept my limits. To do that I have to give myself a break and find compassion for myself. That act of compassion opens the door to acceptance and helps me to be the person I am without covering up.

If this understanding of myself allows me to act in a way that is congruent with my beliefs and experiences, then I can connect with others without fear of what others think, or whether I will be hurt, disappointed or fail in some way. That path to connection embraces my understanding of authenticity: showing myself in my vulnerability is showing my true self, and that allows vulnerability to become beautiful and a source of strength.

In her TED talk Brené Brown tells the story of many years of research and personal discovery to understand The Power of Vulnerability. She explains how embracing vulnerability enables people to feel worthy, which in turn gives them a strong sense of love and belonging.

If we try to avoid hurt and do not allow ourselves to be vulnerable, we put an isolating shell around us. Then we cannot show ourselves as we are and loose the opportunity to connect to those feelings of inner worth, love and belonging. The dilemma explained by Brené Brown is that we can’t selectively numb the fears that vulnerability exposes, without numbing the positive qualities as well. So if we suppress our vulnerability, we also numb feelings of joy, gratitude and love at the same time and cut ourselves off from these sources of happiness.

I feel it myself and some fellow patients have told me the same thing: the vulnerability that their conditions has brought into their lives has also heightened their ability to feel joy and gratitude, to live in the moment with love and happiness in their hearts. Vulnerability – indeed a word for our times.

Patient leadership in health care?

“We cannot rest until there are Patient CEOs in every healthcare organisation around the world” Michael Seres 1969-2020.

“We cannot rest until there are Patient CEOs in every healthcare organisation around the world” Michael Seres 1969-2020.

And now the Covid-19 crisis…. Even before the pandemic started, health systems worldwide needed reform. The challenges vary: changing dynamics of demography, rising costs and overpricing, shortages of qualified healthcare staff, false market incentives and poor governance, corruption, and fraud. The results are inadequate access, poor quality and/or high costs. The general perception is that current health systems must reform, because projected social, environmental and economic developments will make them unsustainable.

One useful learning from Covid-19 is that without the support and cooperation of the public or patients, health systems are powerless to stop this pandemic. Patients and the public will have to be part of the solution.

This is an interesting and important insight. The history of health care has been characterised by unequal relationships, or what has been called “institutionalised paternalism”. The Doctor Knows Best, presents the solution, which the patient then adopts. Since Hippocrates the patient has been the problem to be solved by a health professional in a system created and run according to this philosophy.

As an economist I have learned that the market for health care is characterised by numerous “failures” where supply and demand do not meet to produce the best outcome. One of the main problems is information asymmetry. If you buy apples on a farmers’ market, your demand for apples depends on how much you need and what you are prepared to pay for the apples on display. You can get this information. However, if your knee hurts, it’s hard to know what you need. Unfortunately, it is generally the supplier of the treatment who will give you that information. A surgeon might say you need surgery, a clinician recommends pills and a physiotherapist says you need some exercises. Each specialist will tend to recommend a solution around her or his core knowledge. How can the patient process this information and judge, which solution is best?

Therefore, when supply dictates demand, because health care professionals decide on treatment, the result may not be optimal for the patient. Another characteristic of health care, which impedes a good result, is that the patient doesn’t usually pay directly for the treatment chosen, and therefore has no incentive to look for value for money. Additionally, in many health systems, including Switzerland, salaries of senior health professions are often linked to turnover: more complicated medicine = more salary. All in all, the chances are significant that the treatment decision will be guided by other motives than the best patient outcome.

As a patient with a long and complicated medical history of chronic diseases this has been my experience on several occasions. If I am not listened to, or not taken seriously, or treated like a faulty object, terrible errors and oversights can and have occurred, which affected my health dramatically. As a patient advocate, I have also been witness to the sad stories of others, who for many different reasons have been failed by the health system.

Both approaches show weaknesses in the health care system from different perspectives, but they both point unequivocally to greater involvement of patients in decision-making. Patients are not just a “liability” in health care, but also an “asset”. They are not just the problem to be solved, they can be part of the solution.

If I think back to the way I was treated even 15 years ago, I believe that a paradigm change has started. There is way to go, but today patients are generally treated with more respect, with consideration for their feelings and acknowledgement of their suffering.

Treating patients better also opened the path to recognising that collaborative patients can contribute to their own health and well-being. A plethora of terms has emerged, which reflect these developments: “patient voice”, “lay involvement”, “patient empowerment”, “health literacy”, “patient centricity” and “shared decision-making”. Personally, I like the concept of “shared decision-making”. In health care I need the knowledge, experience and advice of a specialised health expert, but I want to share responsibility for and participate in those decisions, for which I ultimately carry the consequences. I want to be in dialogue with health professionals, who recognise that I live with my diseases 24/7, and therefore I also possess valuable knowledge and expertise in managing my care, which a health professional seeing a patient for a single consultation every few months, cannot acquire.

Health is a fine balance in an unforgiving nature

That patients can take an active role in their care is now accepted wisdom. Most health professionals make a genuine effort to meet individual expectations and needs. I hope that health care reform will also encourage, empower and educate patients themselves to rise to the opportunity of taking a more active role in their own care, rather than adopt the passive role expected of them in the traditional care model. There seems now to be consensus, that developing real dialogue would result in better care outcomes than paternalism. 

Patient involvement in individual treatment such as “shared decision-making” leads to better outcomes, when it is adopted. However, health systems (as defined by the WHO “all the activities whose primary purpose is to promote, restore and/or maintain health”) are still a long way from reflecting patients’ needs. Their power structures reflect a complex interplay of many different interest groups – except the patients. Patient involvement is at most a patient council, which is generally unpaid and without formal responsibilities. Some institutions enable feedbacks, such as questionnaires, or scrutiny in the form of an Ombudsman. Current patient involvement in health systems is tokenism.

In the pandemic we must rethink. I believe that patient empowerment in health care can not only improve personal outcomes, it is the logical next step in the paradigm change needed to meet the challenges facing the health sector.

According to the WHO, Health Sector Reform involves “changing the rules of the game and the balance of power within the health sector.” One day it will seem unbelievable that health systems were once run without using the knowledge and experience of users. I believe that representatives of the patient perspective should be working alongside managerial and clinical leaders at strategic and operational level to drive change in health systems. The principles of “shared decision-making” should be applied at leadership level because patient leadership in health care would improve it, through better governance, transparency, and accountability.

This vision probably seems as absurd now, as the ideas of empowered patients were just a few decades ago. It has huge implications for the existing power structures. But it is a necessary step towards a health system where patient health and well-being is the uniting aim, and where space is made for love and compassion.

As the visionary patient leader, Michael Seres, said, “As patients we can’t wait for the system to change, we don’t have time.”

We are all patients sooner or later. In a pandemic, anybody might be in intensive care next week.


Who Patients Leaders are exactly; what would qualify them to take a role in improving health care services; how they could do this, and where this model has been implemented will be explored in my next blogs.

References for further reading

This article draws on the ideas of people who have campaigned before me. David Gilbert has written many articles about patient leadership and has inspiring ideas. He has been campaigning for recognition of the role that patients could play in health care for many years, and is one of the few people able to actually implement the changes he fights for. Amongst other things he is Patient Director at the Sussex Musculoskeletal (MSK) Partnership and author of The Patient Revolution – How we can heal the healthcare system.
He wrote a touching elegy to Michael Seres:
Remembering the patient leader and entrepreneur Michael Seres
https://blogs.bmj.com/bmj/2020/06/16/david-gilbert-on-michael-seres-three-times-as-good/

World Health Organisation (WHO) Definitions in health care:
https://www.who.int/healthsystems/hss_glossary/en/index5.html

Research report on the benefits of Patient Shared Decision Making https://www.healthcarevaluehub.org/advocate-resources/publications/consumer-benefits-patient-shared-decision-making

Looking at the roles patient leaders play and the challenges they face
https://www.hsj.co.uk/why-patient-leaders-are-the-new-kids-on-the-block/5046065.article

My dream for better health care

Coming out of our Swiss “Soft Lockdown”, for all of us who have been self-isolating or otherwise sheltering from the outside world, feels like the slow recovery from an illness. In the canton of Bern, where I live, the population has generally not been greatly affected, compared with other regions of the world. Nevertheless my belief is that we still need to be very careful. We know so little about the Corona virus, so it’s too early to make assumptions about what comes next. So now we can catch breath. It’s a good time to start thinking about other things.

The title picture is taken from my balcony on Whit Monday. For about 10 days a year my climbing rose explodes into flower and it is paradise to sit on a sunny day with a book and a cup of tea, perched above my garden, the meadows and the mountains in the background. It’s part of a healing process.

Rather than write today about emerging into the new, “normal” world, I would like to offer you a link to an interview that I gave for the TEDx Zürich , as a follow up to my TEDx talk of 2017 (which is at the top of the article, if you haven’t seen it). The interview contains some thoughts on setting personal goals, the importance of nature for health, living life on a knife edge – including the choices that we are facing in the pandemic – and above a call for change in health care by putting patients needs more clearly into the centre of endeavours.

Please read and enjoy: Balancing Life on a Knife Edge

Covid-19 Lockdown: how is it going?

As the Lockdown started in Switzerland in mid-March I wrote about my strategy to manage Corona times. I named 5 things that I thought might help me through this extraordinary period. So where am I now? How do I feel?

Today decisive measures will be loosened, schools, shops and restaurants will open again. Like many Swiss people I am relieved that the last two months have not been as deadly as anticipated. But I am also deeply mistrusting. Will there be a second wave? Why is it ok to open up now? Weren’t we told that there has to be widespread reliable testing first? So much is unknown and there are about as many opinions on the pandemic outcome, as there are people expressing them.

My personal expectation is that it’s going to be a long time until the health authorities tell me that I can embrace the people I love …. travel to places I long to visit….. live without fear that I may become ill, or cause harm to other people…… I’m not even sure to what extent I can make my own judgements or must abide by regulations. What is my responsibility to myself and to the society that I live in? How is the lockdown impacting my health and well-being?

So, time to revisit my intentions, examine my feelings, and consider…

How did the 5 intentions help me?

Moving my body

A trainer sent me a link to a fitness studio which was broadcasting about three daily workouts – everything from Yoga to tough Interval Training. So I’ve done a workout every morning, and it really feels terrific. Sometimes went for a run or walk instead, but mostly I was @home.

Meditating

After a shaky start, a friend told me that Jon Kabat-Zinn was broadcasting mindfulness to thousands of people every evening during the pandemic. Bless him! His talks have been a marvellously soothing and comforting way to end the day. Sometimes we break out after the meditation session into small groups on zoom and exchange ideas and experiences across continents. I’m slowly understanding what mindfulness is about.

Getting overdue tasks done

Every Sunday evening, I take a piece of paper and write on it what I want to get done the next week. Work, but also household chores, gardening, reading. Many things I enjoy, and some I don’t – like doing my tax declaration. I’ve got quite a lot done and found a good structure, but I’ve been so preoccupied with ticking things off on my list, I sometimes forgot to enjoy what I was doing.

TV before bedtime

It’s an almost morbid fascination following the world in crisis and how different leaders and cultures are managing it. I was often drawn to the News in the evening. There are also many interesting “in depth” programmes. Watching them in the evenings nevertheless made me miserable and unable to sleep. It took me a long time to stop doing this to myself.

Love and compassion

It’s been easy to remember the power of love and compassion. The wonderful gestures of love and solidarity, particularly through the work of artists and musicians on social media, or spontaneous online support groups, or neighbourhood help with shopping or singing on balconies. The marvellous dedication of front-line health workers, and essential service workers delivering our food, and generally keeping things running has been quite extraordinary. (Meanwhile many of the white-collar office community enjoyed the luxury of deceleration in lockdown and closer family life offered by home office working).

So, everything is fine?

You might think everything is ok for me. Actually, reading my journal of the last 6 weeks is quite sobering. I write about nice things I did, comforting phone calls with friends, baking tasty cakes, sunshine, making a fire in my garden in the evening, interesting podcasts, new fulfilling work, and yet … my entries are short and terse. Phrases like “I feel better now” or “I feel ok” appear frequently. Beyond the reports of my flourishing activity with the 5 tricks to fight the Coronavirus, I also read about sleepless nights, a sort of numbing dread and disbelief, loneliness and boredom.

Anybody else?

I imagine many of us feel this way. The uncertainty of the future has become threatening. Strange, when you think about it, because the future is unknown and uncertain by definition. It always will be, however much we try to plan and insure against risks.

I remember the nuclear disaster at Chernobyl in 1986, which also happened during a wonderful April. Living in the Black Forest of Southern Germany at the time, the beauty of the emerging green and the spring light was in stark contrast to the unseen threat of radioactivity that the people in Southern Germany felt was literally raining down onto them. This crisis feels similar, except the enemy hides not in the clouds, but in people and creates distrusts even amongst ourselves. People I encountered on walks near my home sometimes didn’t even look at me, let alone greet me. We were all so afraid.

How am I touched by events?

The word “touch” has become key to me during these times. I am touched by the examples of solidarity that I have seen. I am touched by beautiful expressions of humanity and creativity that artists from all walks of life and everywhere in the world – both professional and amateur – are creating and spreading freely on the internet. I am touched by the friendship that I experience from neighbours and by the new encounters with people on the internet, who I have never personally met. I am touched by the appalling suffering that I have watched on television or can imagine just by reading newspapers.

The UN reports that the number of people on earth facing “acute food shortages” will more than double this year. I am touched and horrified by the thought that actually nobody has to starve, even now. If the wealthy gave to the poor, then the millions of workers worldwide who have lost their employment and have no income wouldn’t be in danger of starving.

Many people are faced by existential crisis, and even death. The world is on an unfathomable roller-coaster of transformation. My mind and soul have been touched during this pandemic as never before. However, in all this inner chaos, my body has got left behind. I have not been touched physically: not since the beginning of the lockdown and the introduction of social distancing.

After 2 months, I am realising what this means. I acutely miss the touch of a handshake, or an embrace, a close dance or a kiss… I even miss my physiotherapist extending a joint or massaging a tense muscle. I believe that this is the source of my strange despondency and the feeling of emptiness.

By nature we are beings that need physical contact. Documentaries show primates who groom each other to reduce stress and resolve conflict. Scientific papers report about the various hormones that are produced by touching. There is even a medical term for what I am experiencing: “touch starved” — also known as skin hunger or touch deprivation. There is information on many webpages describing this phenomenon and what I have so intensely felt in recent weeks. Lockdown is opening up in many countries, but even in these places, people at risk are still being told to shield themselves and maintain the strict rules. If the post lockdown “normal” is to continue isolating people at risk, the effects of touch starvation must be addressed, because it is as important as getting food to people. People are not being nourished adequately, if we just leave a bag of groceries on their doorsteps.

Groceries delivered to people sheltering at home in the Covid-19 pandemic. Photo by Alex Alpin
Groceries delivered to the doorstop (Alex Olpin)

Easter poetry in Corona times

A couple of weeks ago I got a e-mail mail containing a chain letter in English asking me to send a poem or quote to somebody and then put my name second on the list. I NEVER answer chain letters. NEVER!

But this time I hesitated, and reflected. The request was sent to me by a woman whom I am fond of…. I love poetry and miss sharing it with friends…. I am anxious and uncertain, as we all are, and as are these times… I am questioning everything in my life, so why not question this decision?…. As time progresses, I increasing believe and hope that our lives must change after the Covid-19 pandemic…. Desired change can start with me.

Therefore, I responded to the chain letter … and was richly rewarded by lots of beautiful thoughts and poems, which I have copied to you below.

I tried to do the same thing in German, but got almost no responses. I don’t know why. Maybe it’s a cultural thing. So I’ve added a couple of things of my own, or that I found on the internet for the German pages of my blog.

By the way, last Tuesday was the Spring Full moon, when the moon appears larger, because it’s closer to earth. The picture is taken from my balcony.

John Donne Meditation XVII: Devotions upon Emergent Occasions

No man is an island,
Entire of itself.
Each is a piece of the continent,
A part of the main.
If a clod be washed away by the sea,
Europe is the less.
As well as if a promontory were.
As well as if a manor of thine own
Or of thine friend’s were.
Each man’s death diminishes me,
For I am involved in mankind.
Therefore, send not to know
For whom the bell tolls,
It tolls for thee.

Kitty O’Meara

“And the people stayed home. And read books, and listened, and rested, and exercised, and made art, and played games, and grew gardens full of fresh food, and learned new ways of being, and were still. And listened more deeply. Some meditated, some prayed, some danced. Some met their shadows. And the people began to think differently.
“And the people healed. And, in the absence of people living in ignorant, dangerous, mindless, and heartless ways, the earth began to heal.
“And when the danger passed, and the people joined together again, they grieved their losses, and made new choices, and dreamed new images, and created new ways to live and heal the earth fully, as they had been healed.”

An African saying

Worrying does not
take away tomorrow’s
troubles, it takes away
today’s peace

Doubletake by Seamus Heaney

Human beings suffer,
they torture one another,
they get hurt and get hard.
No poem or play or song
can fully right a wrong
inflicted and endured.

The innocent in gaols
beat on their bars together.
A hunger-striker’s father
stands in the graveyard dumb.
The police widow in veils
faints at the funeral home

History says, Don’t hope
on this side of the grave.
But then, once in a lifetime
the longed for tidal wave
of justice can rise up,
and hope and history rhyme.

So hope for a great sea-change
on the far side of revenge.
Believe that a further shore
is reachable from here.
Believe in miracles
and cures and healing wells.

Call the miracle self-healing:
The utter self-revealing
double-take of feeling.
if there’s fire on the mountain
or lightning and storm
and a god speaks from the sky.

That means someone is hearing
the outcry and the birth-cry
of new life at its term. 

Unknown

History will remember when the world stopped And flights stayed on the ground And cars parked in the street And trains didn’t run

History will remember when schools closed And children stayed indoors And medical staff walked towards the fire And they didn’t run

History will remember when people sang
On their balconies, in isolation
But so very much together
In courage and song

History will remember when the people fought For their old and their weak Protected the vulnerable By doing nothing at all

History will remember when the virus left And houses opened And the people came out And hugged and kissed And started again

Kinder than before

Ask for it – unknown

Ask for healing, clarity, peace, wisdom,
and guidance. Ask for abundance,
creativity, light and love. Don’t be timid
in your prayers or your request. Be
bold. Be positive. Be grateful as
everything you’re asking for is already
making its way to you

John Milton Paradise Lost, Book II

This horror will grow mild, this darkness light:⁠
Besides what hope the never ending flight
Of future days may bring, what chance, what change
Worth waiting, since our present lot appears
For happy though but ill, for ill not worst;
If we procure not to ourselves more woe.”

‘It Only Hurts For A Little While’ from CD ‘Croonin’ with Anne Murray

It’s so easy to be smart with somebody else’s heart!

Leisure, William Henry Davies

What is this life if, full of care,
We have no time to stand and stare.

No time to stand beneath the boughs
And stare as long as sheep or cows.

No time to see, when woods we pass,
Where squirrels hide their nuts in grass.

No time to see, in broad daylight,
Streams full of stars, like skies at night.

No time to turn at Beauty’s glance,
And watch her feet, how they can dance.

No time to wait till her mouth can
Enrich that smile her eyes began.

A poor life this if, full of care,
We have no time to stand and stare.