18 Apr 2022 What people don’t see when you live with a chronic illness
What’s it like when you go out out – if you do go out out? Is there a lot of preparation and organisation involved?
I have friends who don’t have EDS or chronic illness. They fill their weekends with activities from morning till night – doing multiple things in one day. And they don’t seem that tired.
When I have a big Saturday night out, here’s what it can take:
– early night Friday
– only seeing one client on Saturday morning as opposed to my normal three or four
– Bed rest from 2-5pm Saturday
– Taxi to and from London – can’t do public transport as well
– Full day of rest on Sunday so I can be at work again on Monday
Going out requires preparation and forward planning for many of us. I know I can only do one big event a weekend. Staying up past my bedtime was huge. It seems silly that one late night can really take it out of you – but that is reality for many people.
We may see people with chronic illness on social media smiling and looking like they are having a great time (and I hope they are), but we don’t know what it took to make that happen. People can’t see what is going on under the skin or behind the scenes. They won’t know the sacrifice made to get to one event. They won’t understand how much it means to us to be able to keep to our plans and go out. The amount of times I have let people down at the last minute because I just could not face going out. True friends stick around and understand. I’ve lost a few along the way and that’s OK. I need people who really understand because I don’t have the time or energy to feel guilty about it. That’s just another energy drainer.
So, I’m just curious – what planning and prep is involved for you behind the scenes?