It’s absurd to think it took a global pandemic for me to realise I was hiding my invisible illness in so many aspects of my life.
Almost exactly a year ago I went in overnight for a sleep study (yep so before covid times). I had been exhausted to the point of not being able to keep my eyes open during the day for months on end. Nothing was showing up in my blood tests so I was hoping it was something to do with my sleep – it wasn’t. There was nothing abnormal about my sleep.
Flash forward to March 2020 when we went into lockdown. All of a sudden I was working from home everyday and doing next to no socialising. Guess what disappeared? My extreme fatigue. More so, I had the most energy I have had since before my major colorectal surgery in 2015.
My self diagnosis? Chronic fatigue from being chronically ill and functioning in a world not equipped for me.
When I think back I’ve been multi tasking, masking and juggling my life since 2014 when I got my diagnosis and suddenly needed to see a dozen specialists. I sacrificed lunch breaks to go to appointments and rushed back to not be seen by colleagues as taking time off work – who knows how much I spent on Ubers getting me to and from work and appointments over the years.
I made early morning appointments that I could go to before work – I am not a morning person so this wasn’t ideal and affected me for the rest of the day, but it was a way to keep my medical stuff seperate from my work and make the best impression.
I still have just as many appointments but it feels much more accessible for me to take time during the day now that everyone else is being flexible and going through the challenges that covid has thrown everyone. It’s funny though that the space made to accomodate people like me only comes when the general population are facing it as well.
I really hope this openness and vulnerability continues once the pandemic is over, because it has made a huge difference to my life as a chronically ill person.
For now, I’m promising myself that:
⁃ I will make medical appointments at times that work well for me
⁃ I will rest when my body needs it
⁃ I will be kinder to myself for needing to take time off work for my health and quite literally to keep me alive and well