The therapist who fell down the chronic illness rabbit hole

After years as an NHS psychologist, Louise Kenward developed chronic fatigue and fell down the rabbit hole of ‘medically unexplained symptoms’. She shares her unique perspective as patient *and* therapist.
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Line drawing of Alice in a tunnel watching the white rabbit run past her

Until 2012 I worked as a psychologist and psychotherapist in the NHS, practicing Cognitive Analytic Therapy (CAT). I then developed what was later diagnosed as Post-Viral Fatigue. Seven years on I continue to live with a debilitating, energy-limiting illness.

Last year, I was asked to give a presentation on chronic fatigue to a conference of CAT therapists interested in physical health conditions. My plan was to give a first-person account of a chronic fatigue illness – using myself as a case study – alongside a historical account of fatigue conditions. It was suggested by the organisers that I would be wearing two hats: I was now an ‘expert by experience’ and practitioner. This put me in an unusual position, being on both sides of a dyad that can be challenging when it comes to these illnesses.

Down the rabbit hole

Chronic fatigue is a confusing, shape-shifting condition. Though I speak the same language as people around me, I rarely feel that we understand each other when talking about fatigue. When I first began to tell others about being ill, responses like: “I’ve been a bit under the weather lately too”, and, “there’s something going around”, left me reluctant to talk again of my illness for a long time. Medical professionals were also dismissive – I was told that everything ‘looked normal’ and ‘there’s nothing wrong’. That was the end of the conversation and I was invited to leave the consulting room.

With chronic fatigue, things are never quite as they seem. Any previous understanding of laws of nature must be abandoned. Just as I think I have my sleep sorted, I’m awake at 2am and cannot do anything about it until 6am. I think I can walk far enough to navigate the shops, but then it feels impossible to get out of bed. Feeling confident in my ability to concentrate, I leave a pan of porridge to boil dry and burn.

It reminds me of the story of Alice, who falls down the rabbit hole into Wonderland, a new and surreal world. The place has a familiarity to it – the people and animals, houses and landscape – but it is a confusing and challenging place to navigate. There are talking animals and curious laws, and customs that make little sense to Alice (and indeed the reader). And the strangest thing is, no one but Alice finds any of this peculiar.

Image of Alice gazing up at a tree containing a grinning cat

As with Alice, throughout my illness many around me have held that I am the peculiar one, and that what I am experiencing is not odd at all. This has unhelpfully and detrimentally been confirmed by the Department for Work and Pensions: when I applied for disability benefit, my assessor noted in her report, ‘she did not look tired’, as justification for rejecting my claim, undermining an entire history and numerous reports claiming otherwise.

Alice manages to navigate Wonderland by holding onto a strong sense of self, firmly convinced that what she experiences is real and that the world itself is strange, for which I have great admiration. Making this distinction has been crucial for me too.

Curiouser and curiouser

There is an ongoing division between some medics as to whether chronic fatigue conditions are physical or psychological in nature. Preparing my presentation, I drew on Alice’s endless curiosity to withhold judgement, and found that many other conditions have been identified through history as psychological, before the science showed otherwise: cancer was treated with group psychotherapy for repressed anger as recently as the 1970s; Multiple Sclerosis was deemed ‘all in the mind’ up until the MRI scanner was invented; tuberculosis, asthma and ulcers have all been treated similarly. These are discoveries that help to make ‘Wonderland’ more real; the ground under my feet becomes a little more solid, and from there I can begin to navigate this curious place.

While the Department for Work and Pensions and medical profession has often treated chronic fatigue patients in a detrimental and harmful way, the media has not been kind to us either. In the 1980s an ‘epidemic of yuppie flu’ was proclaimed in UK newspapers, paving the way for a generation of misunderstanding and lack of support. In recent years research has created additional problems, notably the PACE trials. Setting out to prove their hypotheses that changing ‘illness attitudes’ and behaviours would improve recovery, cognitive behavioural therapy (CBT) and graded exercise therapy (GET) have become the mainstay of treatment programmes. This research has since been widely and publicly discredited for poor science, but their recommendations are still at the core of UK treatment, with official Government treatment guidance not set to be reviewed until next year. These things leave a lasting legacy of harm and mistrust for all.

Historically, there are accounts dating back to the 1700s of illnesses of fatigue. Further back still a connection with ‘hysteria’ can be trailed – a word with many negative associations, especially for women, that, incredibly, can be connected to witchcraft. With the majority of those diagnosed with these conditions being women, I am interested in how much these attitudes play a part in diagnosis and treatment today. I also wonder if I would rather be ducked in the river to see if I floated or drowned, than undergo another PIP assessment to determine my degree of illness.

When there are no clear answers, it is open game for pretty much anything – when nothing makes sense, anything is possible. This uncertainty has created a market for all manner of alternative therapies. Drinking cow urine was the most recent treatment suggestion I encountered as I was writing the talk. And while I dismissed that, I have tried many other things. In general, I have found I’ve needed different things at different times, but that ultimately, I need to look after myself and rest.

Alice standing looking up at a creature smoking a hookah sitting on a toadstool

‘Medically unexplained symptoms’

In large part due to the lack of research, the science on these illnesses isn’t yet clear. This limits understanding as well as treatment options for patients. In recent years, however, there have been interesting research developments in microbiology, immunology, genetics and neurology. It’s important to acknowledge this fact, and be aware that because of this, holding enough belief in my own experience and judgement is really important.

While the PACE trial has been discredited, the term ‘Medically Unexplained Symptoms’ (MUS) is increasingly being used in the NHS to refer to patients whose issues can’t be easily explained and treated. The organisers of the Cognitive Analytic Therapy conference suggested this term for the title of my talk. I recoiled. For me, it had become another way of saying ‘it’s all in your head’ – factitious, psychosomatic, functional, hysterical – another set of words to dispute the reality of the illness, to reframe it as psychological. ‘Medically unexplained’ is not a diagnosis but an end to a conversation.

Dr Emma Reinhold, a GP, is an advocate of doctors pursuing more tests, asking more questions, having more information before relegating a person to what feels effectively to be the ‘wastebasket’ of the NHS. Reinhold writes in the British Medical Journal:

Since learning the latest about the linked conditions of mast cell activation syndrome, postural orthostatic tachycardia syndrome, dysautonomia, and the hypermobility syndromes (including Ehlers-Danlos), I have yet to find anyone with ‘MUS’, I just find patients who have been failed by a lack of medical knowledge among their caring clinicians…

Assuming that anything not yet understood is psychological is undermining of the patient experience as well as the nature of psychology. Indeed, we are all connected in brain and body, but this is not an explanation used for arthritis or chest infections. It is unhelpful and limits patients’ and clinicians’ levels of understanding. Curiosity needs to be maintained.

The role of the psychotherapist 

I had initially been concerned about my role as a psychologist talking to therapists about physical health conditions, wary of contributing to a belief that a fatigue condition is in any way psychological. But I also know the value of psychotherapy for anyone experiencing difficult life circumstances, and wanted to stress this. I wanted to flag up that historically, illness is often misunderstood as psychological until the science catches up, and that even without knowing what is causing the condition, psychotherapy can have its own value.

As part of my research for the talk, I invited chronically ill people to share their experiences of psychotherapy with me. I had messages from people who had gained a great deal from it. Dealing with past trauma, for example, means there is one less thing for the body to deal with, reducing general distress even if not reducing the fatigue condition itself. The impact of chronic illness can be reason enough for seeking therapy out. Therapy can be an opportunity to grieve a life lost, a life that could have been. It can be valuable too in helping people to cope, to adjust to a different kind of life than was expected. Psychotherapy can help a person learn to ask for help – to navigate shifting relationships and all the things we might ordinarily be able to accommodate with good health. It can help in dealing with the shame and stigma that comes with chronic illness, to put it back in its place: it does not need to belong with the person who is ill.

Above all, the skills of the psychotherapist are founded on non-judgmental and unconditional positive regard, of listening to the person sitting in front of them. To hear someone, and to believe them, is perhaps the most powerful thing one person can do for another.

The relationship between patient and professional

When I was first unwell, I tried to find out more about my condition. Looking online I began to find conversations between people who had been ill for many years. Websites and forums were filled with anger and hostility. There was so much pain, I couldn’t bear it. Seeing the words exhausted me even further and I switched off quickly. Seven years on, I entirely understand the depth of that anger. I know why people end up feeling this way.

As a patient, when I attend a medical appointment I am always conscious of my presentation, anticipating a lack of understanding and needing to prepare myself for this, to explain in a way I hope will be heard. Sometimes I am conscious of wanting to say, ‘but I’m a psychologist!’ to somehow prove my word, as evidence I am a credible witness to my own illness.

Line drawing of Alice caring a pig in a bonnet

It has become a belief held by some in the medical profession, though, that patients are ‘angry activists’, unfairly blaming medics for their situation and unwilling to listen to professionals. The polarity of this is perhaps the stereotype of the passive patient who does nothing to help themself. I have come to discover many practitioners who are far from dismissive, and a group of patients who are perhaps more knowledgeable about their conditions than anyone else. Building relationships with each other is, I think, the most useful thing we can do now – increasing the volume of the patient voice in clinical settings and filtering out the more damaging voices from psychiatry that continue to ring out every time a new press release is printed will be a good start.

How can things improve?

The therapists I know and have worked with are caring and thoughtful. I think that it is a systemic challenge – of cost-cutting and reduced services – that exacerbates difficulties in patient relationships, as well as the lack of research and scientific data. I am concerned about the increasingly widespread notion that Cognitive Behavioural Therapy (and exercise) is somehow a cure-all. Mindfulness, meditation and yoga are also commonly recommended in the same breath. I do not wish to undermine the value that many get from these approaches, what concerns me is a growing system that reduces treatment to short courses of generalised treatment approaches without space for or expertise on the complexity of the difficulties that are likely to be referred into these services. Aside from an absence of any effective treatment method, these recommendations without caveats and caution can place additional burden on the patient if they do not get well (not only the illness but also the failure to recover is their fault, is the message).

I think a greater emphasis on the expertise of patients needs to be considered in developing and running services. I am following how far ‘experts by experience’ have come in mental health services. Also I see a growing number of therapists and other medical professionals who are training because of their life experiences and seeing them as additional skill sets, not setbacks. I hope that this can be followed in physical health.

Hope for the future

What gives me hope is the reaction of the CAT therapists to my presentation. I was nervous about how I (and my talk) would be received, never having been so open about personal experiences in a work setting – or spoken so openly about my illness – and was enormously heartened by the response.

Feedback I received particularly was how unusual it was for therapists to hear from a patient, and how helpful that had been. A couple of people specifically found the historical context component helpful. A CAT journal is provisionally interested in me producing more technical reformulations of patient/therapist roles for publication. I am hopeful it has an impact on clinical practice and in considering use of terminology re MUS. Separately, I’ve been invited on a panel to follow a screening of Unrest at Birkbeck University next month to discuss Contested Conditions.

For an illness where there is no clear science (yet), one of the hardest things to deal with is the shame and the blame dealt by society. I continue to struggle with the pressure to believe that my illness is my fault – that I have not been able to cope with it or recover through some personal failing. The reality, my reality, is that the illness is enough to deal with – I do not need to take on the shame, blame or stigma generated by others. This stigma has arguably been as damaging, if not more, than the fatigue itself. The origin of these attitudes is for another time, another rabbit hole for me to begin to explore and understand, and where again, context, language and narrative are key.

One thought on “The therapist who fell down the chronic illness rabbit hole

  1. Another good article that highlights the problems we deal with and face. However I would direct people towards the work of Ron Davis, with a blood test that proves someone has ME by way of showing there cells lack the ability to maintain energy like other peoples do. And that of Dr Chia and Dr Lerner who studied Epstein Barr Virus and Entereovirus 71 to show that some patients (sometimes it was as high as 70% sometimes as low as 35%) would respond to anti viral treatments. I personally believe most patients suffer from a genetic condition which causes there immune systems to fail when withstanding multiple pathogenic illnesses, such as ebv in the teenage years, subsequently infection with a bad strain of the flu and/or pathogenic viruses like Enterovirus 71 or Coxsackie B then cause systemic problems. In healthy patients the immune system would keep these problems at bay and they would never be an issue as the viruses would remain dormant, be killed off, or kept at such low level as to never cause a problem. There is much we do not understand about the human body and ME highlights that.

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