In February 2016, I got a virus from which I never recovered. And while I didn’t realise at the time, this took me through a gateway into the world of the ‘millions missing’ – a largely invisible world, inhabited by people who are too often missing from our workplaces and wider society.
Regrettably, given that 13.7 million people in the UK live with a long-term health condition,1 and 7.5 million are categorised as being disabled by their condition,2 it probably won’t be long before one of the ‘millions missing’ is referred to you for help. I hope this article will shine a light on the experiences of people like me, and help therapists and workplace specialists to support them.
Why does chronic illness matter now?
According to The Work Foundation, by 2030, 40% of the UK’s working-age population will have at least one chronic, work-limiting condition, with implications for all involved in workplace health.3 Alarmingly, these data were published before the outbreak of COVID-19. Today, in the UK alone, it’s estimated that at least one million people are living with, or have had, long COVID, the name given to long-term, post-viral symptoms that continue weeks or months after the initial infection.4
Jennifer Brea (chronic illness campaigner and director of the film Unrest5), describes the pandemic as ‘...the largest mass disabling event in our history’.6 This illuminates another perspective on the rhetoric of ‘life getting back to normal’. For me, like many others with disabilities, what we can access reduces as ‘normality’ returns, and virtual living and working declines. For many of us, ‘getting back to normal’ is neither possible nor desirable. It’s important this perspective is understood by anyone whose work involves supporting the workforce with their emotional and psychological health.
What is a chronic illness?
Chronic illnesses are conditions for which there is currently no cure, including: arthritis, fibromyalgia, multiple sclerosis, Parkinson’s, and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). They typically last more than a year and require ongoing medical attention or limit activities of daily living, or both. Poor mobility, pain, memory loss, sensory processing issues and impaired dexterity, are among the countless list of problems people may experience.
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But while conditions can vary significantly, common features of many chronic illnesses are invisible, fluctuating and unpredictable symptoms. These dimensions of chronic illness are hugely problematic because of lack of belief and understanding from others. I have ME/CFS – you can’t see it – and while I may be able to write this today, I may not be able to move tomorrow. And if I keep pushing, over time, I become immobile and bed bound.
I have what Chronic Illness Inclusion, a not-for-profit organisation supporting people disabled by chronic illness, calls an ‘energy limiting condition’ (ELC). It defines ELCs as:
‘A debilitating mix of physical fatigue, cognitive fatigue and pain, alongside other diverse illness symptoms. The main feature is energy impairment. Living with energy impairment means having a very limited reserve of energy that gets depleted by the slightest activity, like a mobile phone battery that never charges more than say 20%. And this reserve is drained by both mental and physical tasks.’7
Unfortunately, ELCs are poorly understood within society, workplaces, the healthcare system and governments, with traditional workplace adjustments often failing to accommodate the full range of ELC symptoms. Yet ELCs are incredibly common, and the Department of Welfare and Pensions (DWP) estimates that one in three disabled people lives with an ‘...impairment of stamina, breathing or fatigue’.8
Why does psychology matter?
Becoming disabled is traumatic. Unless it’s happened to you, you may not be aware that being in a body that loses function is a trauma. Managing pain each day can be overwhelming. Grieving for past identities and lost capabilities is heart-breaking. You lose yourself along the way. There have been moments when I’ve felt somewhere close to suicide while enduring months and months of being bed bound, unable to care for myself, let alone others. And then there’s the fear and impact of the ignorance, attitudes and prejudice of others.
Grief, loss, anger, guilt, shame, despair, loneliness, anxiety and hopelessness are our psychological companions, which fluctuate (daily and over time) with symptoms and impairments.
Stigma and stereotypes
People disabled by chronic illness face additional psychological loads. Too often, for example, prominent stories about disabled people are those of the ‘superhero’ – someone who has defied the odds to lead a ‘normal’ life. Alternatively, the ‘tragic victim’ is someone who has ‘succumbed’ to their symptoms and leads a hopeless, less valuable life. And then there’s the ‘con artist’ – the ‘benefit scrounger’, generally presented in British TV and newspapers as a person in a wheelchair, on crutches or with a walking stick; or the ‘burden’, evidenced within Scope research that reports 36% of the UK population think disabled people are not as productive as non-disabled.9
Unconscious bias towards disabled people is high, and as a result these dominant social narratives play out throughout the systems we inhabit too, including workplaces, relationships and even the healthcare system.
13.7 million people in the UK live with a long-term health condition1
7.5 million are categorised as being disabled by their condition2
According to The Work Foundation, by 2030, 40% of the UK’s working-age population will have at least one chronic, work-limiting condition3
Negative attitudes in the workplace
Every year in the UK, 600,000 people move onto incapacity benefits. Over half of these people have previously been working or have taken extended leave from a job.10 Patients and patient groups cite unsupportive attitudes at work as a particular barrier – many will try to hide illnesses or disabilities out of fear of how they will be judged.
‘You don’t look disabled’ or ‘fatigue and pain aren’t real disabilities’ are common reactions. In a survey carried out by the Welsh TUC in the UK, 67% of disabled respondents said there is more stigma for disabilities that can’t be seen than for those which can.11 In a TUC survey into long COVID, over half of respondents reported experiencing some form of discrimination or disadvantage, around one fifth having their employer question the impact of their symptoms and one in eight facing questions from their employer about whether they had long COVID at all.4
Unhelpful dynamics in healthcare
Everyone with a chronic illness wants to get better. But we have incurable conditions, which require navigating complex and unhelpful dynamics in the healthcare system too. My own condition, ME/CFS, has been viewed by many healthcare ‘experts’ as being ‘in the patients’ heads’, and while there have been improvements in understanding and support in recent years, I’ve met GPs who didn’t believe in my illness; and the few treatments that were available to me five years ago made me worse.
Six years on, I finally have an established network of experienced healthcare professionals, who I have found through effort, careful research and luck, and who, typically, I pay for privately. This network includes my specialist, Dr Annice Mukherjee, a consultant physician and endocrinologist who sub-specialises in ME/CFS and menopause; a therapist; my GP; an NHS specialist in activity management; and a Nambudripad Allergy Elimination Techniques (NAET) practitioner. I will now only work with practitioners who have either had ME/CFS themselves or who have had years of expertise working with ME/CFS patients.
Financial hardship and stress
Undoubtedly, financial insecurity is a significant worry for those with a chronic illness; and according to Citizens Advice, nearly half of people struggling with home loan debt in the UK have a disability.12 Regrettably, not all employees have the good fortune to work for an employer which invests in incapacity insurance for its employees. However, without it, my family and I would certainly have lost our home. Too many are caught in an unbreakable cycle of illness, unemployment, social isolation and poverty.
Ultimately, understanding the psychology of chronic illness is vital for those in helping professions, because anyone disabled by chronic illness not only has to manage the impact of their impairments, but disabling environments and systems around them are made worse by prejudice and ignorance.
How can therapy help?
My therapist has been akin to a lifebuoy, and I believe that both my experience of my condition and the illness itself would be profoundly worse without her. Having reflected together, my therapist, Helen Kewell, and I have some suggestions for professionals who find themselves supporting others with a chronic illness:
- Be conscious of the narrative: chronic illness narratives and stereotypes may influence you unconsciously; for example, the ‘superhero’ stereotype can orientate towards ‘recovery’, often at great cost to the health and personal lives of clients.
- Reflect your client’s experience: get close to the lived and embodied experience of your client’s illness. Use the client’s words and images, constantly check out that you understand what is being said and avoid making assumptions. For example, some people have equated my chronic illness to their general tiredness, but living with an energy-limiting condition, compared with being ‘tired’, is what Arctic winters are, compared with British winters – it’s the same word, but they are fundamentally different.
- Help your client (re)unite their body and emotions: chronic illness can separate us from our bodies, and we can feel our body has given up or let us down. Help your client to see the connections, which can help them psychologically, and add to the client’s symptom-management toolkit.
- Pay attention to energy changes: notice small changes in your client’s energy, concentration and body language. Gently check out how things are for the client and ask if any adjustments need to be made. Remember, people with chronic illnesses are so used to coping with pain or fatigue, without anyone being aware of it, that they may not speak up.
- Make adjustments to normal practice: this may involve thinking about the time, pace and place of sessions. You might ask the client whether 50-minute sessions are too long? Is a certain time of day better or worse, depending on fluctuating symptoms? Is the building/room accessible, if meeting face to face? If meeting online, would making a recording help? Can the client eat and/or drink?
- Be clear: negotiate needs, terms and adjustments from the start, and regularly check in. Make cancellation terms explicit, as it is likely a client will need to cancel without notice, due to symptoms. Remember, affordability and financial insecurity will likely be a concern.
In a survey carried out by the Welsh TUC in the UK, 67% of disabled respondents said there is more stigma for disabilities that can’t be seen than for those which can11
Every year in the UK, 600,000 people move onto incapacity benefits. Over half of these people have previously been working or have taken extended leave from a job10
Chronic illness inclusion
People disabled by chronic illness have skills, experience and unique value to offer. Illness does not define us, nor does it take away our value; indeed, it can increase value. Active learning, innovation, problem-solving, influencing, harnessing technology are skills we use to navigate the disabling obstacles of our day-to-day life. These are also the same skills identified as the ‘most important for the future’ according to the World Economic Forum.
But even though there are 1.2 million job vacancies in the UK,14 only 51.3% of disabled people are in work, compared with 81.4% of non-disabled people.15 That’s a lot of available and valuable talent missing.
If the pandemic has shown us anything, it’s that all humans get sick. It’s part of the human condition. So, chronic illness inclusion matters if we are to normalise being human at work.
But if you ask someone disabled by a chronic illness, ‘What are the barriers to you being able to work?’, the two reasons most often cited are a lack of understanding and the ability to work flexibly. It doesn’t have to be like this. The post-pandemic working world has seen seismic shifts in flexible working practices that were once unimaginable, and this offers hope and opportunity. Some research by McKinsey estimates that 20 to 25% of the workforce in advanced economies could work from home between three and five days a week.16 This represents more than four to five times more remote work than before the pandemic.15
It’s my hope that this becomes the age of disability and chronic illness inclusion. It creates a once-in-a-lifetime opportunity to make disability and chronic illness inclusion at work the norm. At a time when there are so many more people living with a chronic illness, this really is an ambition worth fighting for.
Emma’s experience of chronic illness
It started with flu-like symptoms, as so many viruses do. Two weeks later, I collapsed, partially paralysed. Within a month, I was struggling to get out of bed.
I tried to work for the next five months, fully expecting to get better. I figured that if I kept life as normal as possible, life would get back to normal. Except it didn’t.
Eventually, my boss suggested I stop work. I relented, hoping that after a few weeks’ rest, I’d be back to full health. But the illness persisted.
By this stage, I’d had numerous tests, but none gave answers. All the biomarkers for possible illnesses came back normal.
Eventually, the neurologist diagnosed me with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a neurological disease of the nervous system. There is currently no cure.
Nevertheless, I was determined to recover, and shifted my attention to finding people who felt they had done so. Facebook ME groups became my new best friends. I tried various possible ‘cures’.
The unwelcome reality became clear: I needed to stop and rest patiently, and then gently and slowly begin to push the boundaries of the illness.
Within six months, I thought I was ready to work. My boss was supportive and ‘working healthily and sustainably’ became my key goal. I slowly eased back in, mostly working from home, and gradually working up to my contracted three days a week.
I did this for the next two years, and did work of value that I’m proud of. But I couldn’t sustain the efforts, and the illness slowly began to creep back in.
Looking back, the signs of deteriorating health were there, but I didn’t want to accommodate them. I was loving work and enjoying the life I’d crafted, just on the edge of normal. Slowing down or stopping would have meant giving up what I’d worked so hard for, and I didn’t want to do that.
By the summer of 2019, I had no choice as the illness had taken control again. I was bed bound again. But this time, even with rest, I couldn’t get up. (I later discovered that the hormone shifts of menopause caused this sustained relapse).
That was more than two years ago, and I am still too ill to work. It’s tough. But with therapeutic support, I’m discovering this experience and time are transformational too.
1 Department for Work and Pensions (DWP), 2021. https://www.gov.uk/government/statistics/the-employment-of-disabled-people-2021
2 Public Health England [Online.] Health matters: health and work – GOV.UK (www.gov.uk) (accessed 14 March 2022).
3 The Work Foundation. [Online.] www.bl.uk/britishlibrary/~/media/bl/global/business-and-management/pdfs/non-secure/f/l/u/fluctuating-conditions-fluctuating-support-improving-organisational-resilience-to-fluctuating-conditions-in-the-workforce.pdf (accessed 28 February 2022).
4 TUC. [Online.] www.tuc.org.uk/research-analysis/reports/workers-experiences-long-covid (accessed 28 February 2022).
5 Unrest. Jennifer Brea (dir). Shella Films; 2017.
6 Twitter. Jennifer Brea. https://twitter.com/jenbrea/status/1470975455188557827?s=11.
7 Chronic illness inclusion. [Online.] https://chronicillnessinclusion.org.uk/ (accessed 28 February 2022).
8 Department for Work and Pensions. [Online.] www.gov.uk/government/statistics/family-resources-survey-financial-year-2017/18 (accessed 28 February 2022).
9 Scope. [Online.] www.scope.org.uk/scope/media/files/campaigns/disability-perception-gap-report.pdf
10 Department for Work and Pensions. [Online.] www.gov.uk/government/publications/improving-health-and-work-changing-lives (accessed 28 February 2022).
11 Wales TUC. [Online.] www.tuc.org.uk/research-analysis/reports/disability-and-hidden-impairments-workplace (accessed 28 February 2022).
12 Citizens Advice. [Online.] Doorway to debt – Citizens Advice. (accessed 28 February 2022).
13 World Economic Forum. [Online.] What are the top 10 job skills for the future? | World Economic Forum (weforum.org). (accessed 28 February 2022).
14 Office for National Statistics. [Online.] https://www.ons.gov.uk/releases/uklabourmarketnovember2021(accessed 28 February 2022).
15 https://commonslibrary.parliament.uk/research-briefings/cbp-7540/ (accessed 28 February 2022).
16 https://www.mckinsey.com/featured-insights/future-of-work/the-future-of-work-after-covid-19 (accessed 28 February 2022)