One thing I am constantly being asked, which bothers me on most occasions and I understand that it is out of curiosity, is “what I do all day if I am not working and on long term sick leave?”. These periods of extended time off work is a common part of chronic conditions and most people assume it is a holiday from work and sitting at home watching Netflix all day. 

It couldn’t be further from the truth. 

And yet it is incredibly hard to provide a succinct answer that satisfies their curiosity and makes the responder feel understood. 

Most days I feel like I have a foggy sense of time, unclear of where my time is spent, and where hours and days and weeks go missing. Once I start to break it down, I can see where the time disappears and it is not in the obvious places. 

Medical appointments are rarely the allotted amount of time. Specialist doctors are almost always running late, finalising payments and future appointments take time, and a thirty minute appointment becomes an hour and a half long process. Having medical appointments a few times in a fortnight and there goes a couple of your mornings or afternoons! 

Chronic fatigue or any type of condition that requires you to pace yourself and the activities that you do, means that you are adding in breaks with every activity and those ten minute to thirty minute breaks add up pretty fast. Imagine every time you had a shower, made a meal or washed the dishes, you needed a break before, during and after the activity. A simple ten minute task can easily blow out to almost an hour.

Add in approximately three hours for a nap each afternoon, including time to wind down and time to become alert again, which can sometimes take until you’ve had a meal and tablets at dinner time (because you never feel refreshed after sleep). 

Add in the required or prescribed activities from all of your doctors and medical practitioners, such as taking notes, doing stretches and exercise, self-care, research and medical administration. 

Then there is the neverending preparation and catch up cycle that surrounds medical treatment. Preparing meals and getting everything in order before you have medical treatment and spend the next few days barely able to do anything, zoned out and sleeping a lot. Once you regain a little energy, you try catching up on all the things that you ran out of time for the days before or from the days while you were recovering. 

Managing a chronic condition is a full time job, so of course there are mountains of paperwork for leave from work or financial assistance from the government, chasing medical rebates and insurance. Trying to manage a calendar full of medical treatment and making sure there are enough days between each one for rest and recovery, organising other people to help you with transport and care, and making sure your paperwork and medication scripts are not going to expire before your next appointment.

And as for Netflix… if you are anything like me, it takes three to four hours to watch a two hour movie; I need breaks from the screen, I need to move my achy body and I usually end up more exhausted and drained afterwards.  

A word on the emotional, social and mental toll of long term sick leave: 

You don’t fit in with the workforce, the stay at home parents or the retired community. You are watching your healthy friends and family go to work, earn income and do activities that their bodies allow them to. The fear of missing out and the need for normality is intense.

In a world where productivity is a badge of honour and success, not working and resting is frowned upon and considered a luxury. We shouldn’t have to feel that we have earned our rest or asked permission for it. We didn’t request that our bodies operate at a different capacity than the average person. And we sure wouldn’t take a healthy body and normal lifestyle with continuous work for granted. 

There is judgement that you are slacking off while everyone else works hard and leads busy lives, while you would do anything to be able to have the capacity to work an eight hour day with a generous income and still have energy for other activities. That is the luxury that is taken for granted.

It’s not a holiday or vacation. Even when we go on holiday, our medical problems come with us too. It’s a 24/7 life of health management. 

When you ask what I or anyone with medical conditions do while everyone else is working, as if we have so much free time to fill in during the day, consider the reason why they are not working in the first place – the capacity of our body and the extra needs we have to function each day. That’s what we are dealing with while you work. 

Take heart Readers, let’s reduce the stigma where we can. I’ll keep the light on.

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