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It's Time to Change the Narrative of "Wasting Time" when Living with Chronic Illness.

Writer, Rochelle Hanslow, shares her thoughts on 'hustle' culture and managing chronic illness.


a woman stands in front of a white wall, her arms outstretched and she is gazing off into the distance. She is wearing a white and brown striped shirt.

[Image: a woman stands in front of a white wall, her arms outstretched and she is gazing off into the distance. She is wearing a white and brown striped shirt.]


by Rochelle Hanslow


When you are chronically ill everything changes for you; the way you live your life has to become more regimented and calculated and you have to learn how to cope with a lot of setbacks.

Societally, we are all conditioned to feel ‘lesser’ when we are chronically ill. Many in the community can’t work any longer and their identities change so swiftly that it becomes overwhelming to get to grips with and yet, while dealing with that, people who are ‘able bodied’ are constantly misunderstanding and labelling those in the community ‘lazy’, ‘Hypochondriacs’ and ‘work-shy’. It can be mentally debilitating living with chronic illness, especially in a society that is now hyper-focused on productivity and ‘Hustle’ culture.

Mindfulness for the chronically ill


‘Mindfulness’ is something that has really become a big concept and talking point over the last few years, especially since the pandemic hit. It is a practice in which you learn to live moment to moment and having awareness of your thoughts, feelings and bodily sensations using compassion and thwarting judgement. It is possibly one of the most game changing concepts for anyone who is chronically ill to adopt as we have to live moment to moment and we know our bodies and feelings better than anyone else.

It is also, however, one of the most difficult things for someone who is chronically ill because of how everything that correlates with chronic illness makes you feel, it has a very negative air about it; from the lack of understanding in the medical field, misrepresentation in the media, friends and family turn their backs, employers don’t have compassion and even the community can be a very toxic and unkind place to express yourself at times. It takes a lot to be able to do what is right for yourself, because the truth is nothing feels right. You are judged on your bad days and your good days are held against you.

In the spirit of mindfulness, I’d like to ask this; what if we started to shed the negative connotations that are link with chronic illness and decided to give ourselves the kindness and compassion that we deserve? How would that change the way we manage our time and maintain our illness?

Exploring productivity


Societally, productivity is doing something that is deemed “worthwhile”, tasks that are completed with efficiency that get results. We are in a time where social media is promoting ‘burn out’ as a badge of honour and we are being told to ‘hustle’ constantly to be considered successful in life. Our world is at a stage when communicating with friends and family we are on autopilot in response and the term ‘busy’ gets thrown around a lot. For the chronically ill, we are often questioned when we say we are busy. Instead of it being indicative of productivity, it is seen as an excuse for not meeting someone or going to an event.


Take a moment for self-enquiry and think about what ‘busy’ means to you.


Busy-ness doesn’t have to only mean certain levels of energy and productivity, it doesn’t have to be about constantly ‘doing’. It is perfectly acceptable to see self-care and maintaining your time and boundaries as busy. It uses energy that is a luxury item for those in the chronically ill community and we need to determine how we use that energy wisely. You can say you are busy when you’re having a day to yourself and not feel guilty for attending to your needs. You have been productive when you have managed to just get up and out of bed in the morning. We have to start realising that we cannot continue to ‘pigeon hole’ people, including ourselves.

Success should be based on each person’s goals and views and whether you have worked a seventy-hour week or managed to do 5 dishes before needing to sit down again, those are both different versions of success and productivity and neither are lesser.

Changing our viewpoint of “Wasting Time”

‘Wasting time’ has become synonymous with being frivolous in regarding how we set our priorities in life. If we aren’t conforming to the societal definition of being productive it is said we are wasting our time. We are being conditioned to take on board other people’s priorities over our own; someone may think house work wasn’t more important than a slow walk in nature, however, the latter would be seen as ‘wasting time’.

With chronic illness you are subject to a lot of guilt; having to nap more than the average person or not being able to do your own shopping or dishes can really weigh heavy on a person’s psyche.


The expectations and the ‘should be’s’ tend to make doing what’s best for you a heavy guilt trip.

You often get judgements and off-the-cuff remarks like “It must be great to be able to stay at home and sleep during the day” and having your life seen as non-productive and ‘waste of time’. You often have people coming at you with a “Is that all you’ve done?” attitude when they don’t realise that firstly, this is survival mode for the chronically ill and secondly, what has been accomplished took a whole lot more than is being perceived.

I recently heard a mother commenting to her daughter while passing by on a walk, “Put the stick down and hurry up, you’re wasting time” and this triggered a thought. We get so wrapped up in life that we don’t always see what is really there. This little girl wasn’t wasting time, she was learning through play, she was using her imagination; developing her self-regulatory, language and problem-solving skills. She was being productive and yet it was seen as a ‘waste of time’ because it didn’t fit in with her mother’s agenda that day.

When you are resting because you are worn out, instead of thinking that you are wasting your life or day away, what about showing compassion to self and seeing that you are actually doing exactly what you need to do.


You aren’t ‘wasting’, you are recovering.

Chronic Illness would be so much less toxic to our mental health if we saw that in the moments when our conditioned minds say we are ‘wasting time’, we stopped and took a moment to turn it around to be kinder to ourselves, to see that actually in these times of rest you are not wasting time, you are changing the narrative of productivity and connecting to your soul, mind and body.

Let’s remove the judgement…

Claim those elusive ‘unproductive hours’ and remove the judgement for doing so. Chronic illness is a difficult enough life without continuing to abuse ourselves because of the narrative of society. Think back to the moments in life you’ve truly been your happiest. I know for me, those moments were of perceived “nothing-ness” and yet they were the moments that have stuck with me through it all, the moments where I was embracing life most. These are the moments our souls need us to have, we feel so much more alive when we nurture our primal need for stillness, to reclaim the joy in our life that chronic illness can so easily and cruelly take away.

 

Rochelle Hanslow is a chronic illness and mental health writer and advocate. She has been Ambassador for M.E Support UK since 2015 and sole contributor to the blog since January 2021. She is a self-published children’s author tackling mental health and life issues for children. To view more of Rochelle’s work or listen to her Podcast visit www.madeyouco.com.

 



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