In the latest post of a new creative practice research series – ‘In Practice’ – Alec Finlay explores fatigue questionnaires through ‘subversion by means of soft poetics’.
With certain diseases, such as ME and Long Covid, where their representation is contested, the assessment of fatigue is not a neutral subject. The longstanding crisis around CBT and the biopsychosocial model, and its refusal to acknowledge the functional reality of post-exertional malaise (PEM), has tended to produce assessments of fatigue which, in turn, support patients being encouraged, or pressured, to upgrade their exercise. This can be harmful, given the delayed nature of PEM.
Rather than oppose this Wesselyian rhetoric, in these texts I have attempted to infiltrate and gently subvert, adopting and adapting the typical language used in these surveys. The repetitions of the questionnaires resemble minimal poetry, where phrases repeat and reappear in theme and variation. The texts also resemble the repetitious activities such regimes encourage, such as step counts. Rather than being an intellectual argument against a philosophy I am deeply suspicious of, I sought to enter the modes of expression these experts use. By gently mirroring, or overturning, or inverting, or questioning, a new text emerged. The issue of belief, and being believed, was central: this reflects the experiences of most patients. This is a project of subversion by means of soft poetics. The text that emerged is generally aligned with the emerging philosophy of ‘radical rest’.
Chalder Fatigue Questionnaire
1. Do you have problems with tiredness?
do you believe I’m tired
can you believe I’m this tired
you wouldn’t believe how tired I am
it’s unbelievable anyone could feel this tired
2. Do you need to rest more?
do you believe I need to rest
can you believe I need this much rest
you wouldn’t believe how much rest I need
it’s unbelievable how much rest I need
3. Do you feel sleepy and drowsy?
do you believe how sleepy and drowsy I feel
can you believe I feel so sleepy and drowsy
no-one could believe I feel this sleepy and drowsy
it’s unbelievable how sleepy and drowsy I feel
4. Do you have problems starting things?
at the start it’s hard
it starts hard and gets harder
it’s hard from the start on
it’s unbelievably hard to start and go on
5. Do you lack energy?
did you know I lack energy
can you believe how much energy I lack
I lack energy, more than you can imagine
it’s unbelievable, this lack of energy
6. Do you have less strength in your muscles?
yes, I have less strength in my muscles
where did the strength in my muscles go to
can you believe the strength my muscles have lost
it’s unbelievable, this loss of muscular strength
7. Do you feel weak?
do you believe I feel weak
can you believe that I feel this weak
you can’t imagine how weak I feel
it’s unbelievable to feel this weak
8. Do you have difficulty concentrating?
what are you asking
sorry, what did you say
can you explain the question
it’s unbelievable, I’ve forgotten again
9. Do you make slips of the tongue when speaking?
I may might the odd slip
you wouldn’t believe the slips I make
I slip my tongue if you can
it’s believable, my slips I’m made
10. Do you have problems thinking clearly?
do you believe my problems thinking
can you believe I have problems thinking clearly
you wouldn’t believe how many problems I have with thought
it’s unbelievable how thinking clearly is a problem
11. How is your memory?
do you believe my memory
can you believe what I remember
you wouldn’t believe my memories
my memory is unbelievable
coda: deleted questions
12. Do you start things without difficulty but get weak as you go on?
13. Do you think as clearly as usual?
14. Are you still interested in the things you used to do?
The Chalder Fatigue Scale was developed by the research team of Trudie Chalder at King’s College London in 1993. The scale was based on a similar questionnaire that had been used in a hospital-based case study comparing ME/CFS patients to patients with neuromuscular and affective illnesses, and a study testing the efficacy of cognitive behavioral therapy (CBT) in ME/CFS patients.
Controlling Fatigue
1. I am getting on with the business of living
I am resting whenever I need
2. My life is going well even though I have fatigue
My days still have some joy although I often need to rest
3. It’s OK to experience fatigue
It’s a challenge to need this much rest
4. I would gladly sacrifice important things in my life to control this fatigue better
Resting allows me to redirect energy to help my body heal
5. I can do activities well even if I do not control my fatigue
I allow my fatigue everything in order that it allows me something
6. Although things have changed, I am living a normal life even with my fatigue
Things have changed, rather than living a “normal life” I rest and recuperate
7. I need to concentrate on getting rid of my fatigue
I need “radical rest” to heal the fatigue my illness imposes
8. I carry on with my normal activities when fatigued
I used to do too much and relapse, now I rest and recuperate
9. I lead a full life even though I have fatigue
I accept the recuperative way of life, for now
10. Controlling fatigue is less important than other goals in my life
I have adapted my life to the energy I have available
11. My thoughts and feelings about fatigue must change before I can take important steps in my life
My relationship to rest had to change so I can gift my body what it needs to recuperate
12. Despite the fatigue experience, I am now sticking to a certain course in my life
Despite the seriousness of my illness, I have adapted to a recuperative way of life
13. Keeping my fatigue levels under control takes first priority, whenever I do something
I preserve sufficient energy to allow my body to recuperate, whatever I do
14. Before I can make any serious plans, I have to get some control over my fatigue
Whenever I think about what I want to do, I integrate enough rest to avoid relapsing
15. When I feel fatigued, I can still take care of my responsibilities
When I feel fatigued, I can ask for the support that I need
16. I will have better control over my life if I can control my negative thoughts about fatigue
It is easier to accept my recuperative life when others understand the fatigue disease causes
17. I avoid putting myself in situations where I might get tired or fatigued
I cannot always avoid fatigue but, if I rest, then the exhaustion will pass
With thanks to Jenny O’Boyle for contributions to the text, and Phoebe Boag for helping to identify the original source. The NHS ‘Fatigue Acceptance Questionnaire’ was adapted from the ‘Chronic Pain Acceptance Questionnaire (CPAQ)’, devised in the USA to evaluate patients’ acceptance of pain. The NHS version, used to treat ME/CFS, replaces ‘pain’’ with ‘fatigue’. These bodily experiences are considered conceptually similar, reflecting a contested view that the disease and its treatment is an issue of learned behaviour that can be unlearned.
Living with Covid Recovery, Kings University
The more tired we get, the more unhelpful thoughts we may have. The more we believe them, the more tired we may feel.
The more people don’t understand how fatigued we are, the more difficult our lives become. The more we aren’t believed, the more at risk we are of relapsing.
For example, someone with fatigue may think: “This is never going to go away!”. This is likely to make you feel hopeless. You feel frustrated and in a low mood. You then focus even more on your fatigue and have more unhelpful thoughts.
For example, someone with fatigue may think: “This is never going to be believed!”. This is likely to make them feel hopeless. They may feel isolated and be in anguish. They then focus more on the lack of support from medical experts and feel bewildered and hurt.
We all have times when we go to bed but can’t sleep… But when you have fatigue this can happen more often. Here are some tips to help you sleep… Get up and try later… Do a relaxation exercise… Don’t worry about sleeping.
We all have times when we neglect to rest when we need to. When you have post-exertional malaise this is likely to happen repeatedly. Here are some suggestions: trust “radical rest” … Take as many naps as you need … Don’t worry about what “needs” to be done, rest is best.
“Many people with fatigue take naps. However naps can disrupt your sleep patterns. This makes you more tired. To reduce your fatigue, aim not to take a lot of naps.”
Many people with fatigue don’t rest enough. Pain and exhaustion will disrupt rest and sleep. This worsens pain and fatigue. To reduce your symptoms, it is important that you take as much time to rest as you need.
“Your fatigue isn’t the only thing in your world. Looking at the good things can help you feel lifted…”
Your experience of not being believed isn’t the only reality. Trust your Long Covid peers and any medical experts who listen carefully, with empathy, and offer appropriate advice.
Think back over the past week. Write down up to five things that you are grateful for.”
Think back over the past few days. Write down all the acts of self-care, kindness, or empathy that you are thankful for.
About the author
Alec Finlay is an artist and poet with ME and Long Covid. He created ‘I Remember, Scotland’s Covid Memorial’ in Pollok Country Park Glasgow. He is on Instagram @alec_finlay.
About ‘In Practice’
‘In Practice’: The Polyphony’s Creative Practice Research project showcases multi-modal creative engagement with the lived experience of chronic illness, disability, caregiving and health from a range of creative practitioners from within and beyond academic research. Founded by Aly Fixter and Grace Brimacombe-Rand, they wanted to bring their own creative practice and academic engagement with creative texts to the medical humanities digital community and foster new connections. If you are a creative person who explores their own lived experience of health or the body through writing, art, photography or any creative methods, please get in touch to share your work with The Polyphony’s audience.
This is so beautiful I could cry.