“Rest recharges my energy”; experiences and perceptions of rest in adults with long-term conditions and fatigue in rehabilitation: 2025 Hackett et al

[Andy]

Full author list: Ackah, Deary, Abonie, Hettinga, Hackett

Abstract

Purpose
To explore and understand the experiences and perceptions of rest among adults experiencing fatigue alongside a long-term condition (LTC) and healthcare professionals (HCPs).

Methods
This qualitative study used convenience and snowball sampling. Semi-structured interviews were conducted with 23 adults with LTCs experiencing fatigue and four HCPs. Data were audio-recorded, transcribed, and analysed using thematic analysis with inductive approach.

Results
Four themes were identified: (1) operationalisation of rest, (2) rest as a practiced skill, (3) rest as a tool for optimising functioning, and (4) barriers. Both participants with lived experience and HCPs viewed rest as reducing activities, connecting with nature, and disengaging from responsibilities. Both groups valued rest for managing energy, symptoms, and activities. Barriers included impact of expectations on persons with LTC, environmental, and interpersonal factors, as well as responsibilities and lack of resting skills. Lived-experience participants noted physical symptoms, while HCPs highlighted “all-or-nothing” thinking as a significant barrier

Conclusion
Rest in chronic fatigue management involved reducing activity, restorative practices, connecting with nature, and disengaging from responsibilities. Identifying truly restorative activities was challenging. Both adults with LTC and HCPs recognised effective rest as a strategic tool for energy management, symptom control, and activity participation.

IMPLICATION FOR REHABILITATION

• Rest is an important component for effectively managing fatigue and optimising activity levels in rehabilitation.
  
  
• Rest is a skill that requires practice and experimentation and viewing it as restorative rather than merely inactivity can help patients embrace it as a valuable tool for well-being in rehabilitation.
  
  
• Our findings highlight the need to prioritise restorative rest alongside physical activity in fatigue management and interventions like activity pacing.

Open access

 

[Eleanor]

The commonly shared perspectives identified by both groups included psychological barriers, environmental factors, responsibilities, a lack of skills, and interpersonal barriers. The physical symptoms associated with their conditions were primarily expressed by the patient participants. Conversely, the concept of the all-or-nothing approach to rest was exclusively expressed by the HCPs.

because they've been trained to think that that's how patients think?

 

[bobbler]

because they've been trained to think that that's how patients think?

And want to insert themselves as ‘being required’ even if they don’t realise that’s because they’ve something they sell/do …and the rest is post hoc justification to themselves so it must be useful/needed

 

[rvallee]

The physical symptoms associated with their conditions were primarily expressed by the patient participants. Conversely, the concept of the all-or-nothing approach to rest was exclusively expressed by the HCPs.

Yeah, this is generally the problem, ain't it? HCPs focus on things that don't actually matter, which we tell them about, but they don't listen, so they stick to what doesn't work.

They're showing how they don't understand any of this with the odd "rest is a skill", as usual trying to turn something simple-but-difficult into some managed version that is complex-but-easy, where they imagine themselves playing some role:

This collaborative strategy involves engaging with team members who possess specialised skills in delivering these strategies effectively. For instance, practitioners skilled in techniques such as relaxation exercises, meditation practices, and guided relaxation sessions play a crucial role in this context.

It's getting to the point where it feels entirely wasted to even engage with HCPs on any of this. They hear the words but understand nothing of what they actually mean. All they can think of is how they can be relevant, when the only way they could become relevant is by doing all the things they want us to do (thinking differently, doing things and assessing whether they work differently, not giving up), which we can't, but they refuse to, even though they could, if they tried.

One of the difficulties with rest, with complete rest, is that it's excessively boring. There's nothing to do about this, boring is not something that can be overcome with skills. Not everyone is built to live as a monk, and not everyone should be made to. Everyone hates being ill about equal parts because it's awful but also because it's so boring, because we miss out on everything. But they're stuck on thinking of this as some psychobehavioral disorder, and so miss literally all the points that they could easily understand in the context of acute illness, such as a flu.

And then of course there's the absurdity where most HCPs view this kind of rest as "well, just give up and retire to bed, then", where they explicitly express how they aren't even close to getting it. Everything we do is either too much or too little, because they understand nothing of what's necessary, and even less about why it is. They keep holding on this belief in some Goldilocks version of things where we can eat our cake and have it, too, when in reality it's just no cake at all.

We recommend educational programs focused on developing relaxation, mindfulness, and stress management skills to empower personalised rest routines. Providing support systems, such as community resources and caregiver assistance, can further enhance individuals’ ability to engage in restorative practices.

This is a business model in search of a market. Absolutely useless to all but a tiny few.

 

[bobbler]

Yeah, this is generally the problem, ain't it? HCPs focus on things that don't actually matter, which we tell them about, but they don't listen, so they stick to what doesn't work.

They're showing how they don't understand any of this with the odd "rest is a skill", as usual trying to turn something simple-but-difficult into some managed version that is complex-but-easy, where they imagine themselves playing some role:

It's getting to the point where it feels entirely wasted to even engage with HCPs on any of this. They hear the words but understand nothing of what they actually mean. All they can think of is how they can be relevant, when the only way they could become relevant is by doing all the things they want us to do (thinking differently, doing things and assessing whether they work differently, not giving up), which we can't, but they refuse to, even though they could, if they tried.

One of the difficulties with rest, with complete rest, is that it's excessively boring. There's nothing to do about this, boring is not something that can be overcome with skills. Not everyone is built to live as a monk, and not everyone should be made to. Everyone hates being ill about equal parts because it's awful but also because it's so boring, because we miss out on everything. But they're stuck on thinking of this as some psychobehavioral disorder, and so miss literally all the points that they could easily understand in the context of acute illness, such as a flu.

And then of course there's the absurdity where most HCPs view this kind of rest as "well, just give up and retire to bed, then", where they explicitly express how they aren't even close to getting it. Everything we do is either too much or too little, because they understand nothing of what's necessary, and even less about why it is. They keep holding on this belief in some Goldilocks version of things where we can eat our cake and have it, too, when in reality it's just no cake at all.

This is a business model in search of a market. Absolutely useless to all but a tiny few.

Do they realise what they are doing to us and take accountability for how what they do isn’t help for us but is propaganda to undermine those people who’ve had decades of not being allowed to follow their bodies needs ,so got increasingly tortured by this ‘no you can’t rest when you need it’ to worse and worse illness) still being prevented from it no matter how many decades they’ve only been allowed to ‘live their way’ and when it makes us iller looking at us like scum.


I get most upset by the stuff that attacks us getting access to rest. Because it kills us and who we are fast. It’s what has taken me from me it’s taken the bits of life I could have had from me and replaced it with being punished ‘because we are going to obsess about what you can’t do’ instead of letting you have any life. I’ve lived a dystopian nightmare because of this type of stuff. It’s like taking oxygen from normal people and suggesting to the world they didn’t need it and when they get ill it’s because they are mad and can’t behave. It’s bullying people and stopping them from having any life or rescuing something from their 50% ability by unstead torturing that by spending that time they have shouting at them for the 50% of ability they don’t have that you ‘demand they increase’

and then not being accountable for the damage they wreak on those people when when they were adamant about doesn’t work. At best twenty years in someone who does this to another taking them from mild to almost very severe might see they were wrong and so just avoid us all, but they never say ‘thus is what we did to you so we will help you survive and do the tasks you now can’t due to my obsession that mad you worse’ .

People who enforced this crap walked away leaving me crawling round and even if they were called in it in their mind would give an hr a week for six months ‘til they got bored we weren’t getting better’ when the damage they caused left us with a need for 100hrs support a week for many years, maybe a lifetime. there is just this gross disacknowledge/invalidation of the size of the 'impact' part of the risk they are taking and imposing onto someone and yet assuming they can also make up and 'reframe' the consequences that it will be the other person wearing.

It’s like someone hitting someone with a car and it causing that person huge damage but because the driver thought they weren’t going fast and had good intentions then after a year of doing a bit to help it’s not their responsibility for the rest of the disability - as long as they choose not to believe it.

I don’t know how we change this mindset in people to make them more responsible and aware of how overwhelmingly accountable they need to be for the impact of what they put out. But I know they all do the cliche ‘I’m just a little part of it’ type thing.