Has anyone ever said to you that “you’re lucky that you get to spend all day in bed” or “I’d love to get to stay in bed all day and not go to work”?
For a lot of us with chronic illnesses this is a phrase we have heard many times. The
majority of people who don’t suffer or know anyone with a chronic illness has the idea that spending all day, everyday in bed is a dream come true and it’s just watching Netflix, eating junk food, reading books, catching up on social media and lounging around.
This couldn’t be more far from the truth. I barely have the energy most days to sit around watching Netflix or catching up on social media. My concentration has become soo bad that I can barely read more than a Facebook message, let alone a book.
Some phrases and words that get said to those of us who are chronically ill can carry soo much more weight to them than you could even imagine. Phrases like ‘you’re soo lucky you get to spend all day in bed’ or you’re lucky you don’t have to go to school/work’ can be hurtful to us and can make us feel like we are choosing to live like this and that it’s our fault which isn’t true. We don’t have a choice.
I can’t control my illnesses, trust me I’ve tried. If I could don’t you think I’d be better by now.
If I had a choice I would much rather not be battling such severe fatigue that some days my body is too exhausted to even hold up my body weight to stand or fighting against the crippling pain which makes it hard to even move some days. I’d rather not have to take the copious amounts of medication just to help me function and to make my pain more bearable or that I have to use a wheelchair when I leave the house because my body is in too much pain and too exhausted to go further than 100 meters.
If I had the choice I’d be in college or at uni and have a part time/ weekend job if my course allowed, I’d go out socialising with my friends who I haven’t seen for months on end, I’d see my family more and go on days out/ holidays with them, but unfortunately my body does not physically allow that, it simply isn’t possible for me right now.
Staying in bed each day is not a break or a chance to binge on Netflix shows and eat what you like. It’s not nice to be laying in bed each day wishing about all of the things that you could be doing and watching your friends go out without you. It’s not a choice for those of us who are chronically ill.
I’ll admit that before I got chronically ill and I was sick one day and had to have the day off school that yes, a day in bed was nice, but when it becomes everyday and you can’t participate in normal everyday life and instead you’re laying in bed feeling too unwell to even open your eyes then it get’s extremely isolating, and lonely some days.
Hopefully one day I’ll be able to go back to studying or having a job, maybe I’ll be able to participate in normal everyday activities but at the moment I can’t and my job right now is to look after myself.
Looking after myself doesn’t just mean making sure I eat and drink, it means remembering to take my medication, that without I would not be able to manage, it’s making sure I make it to hospital/ doctors appointments and that I get enough rest. I have a special routine I have to follow each day that’s been specifically designed for me by my specialist. It’s soo much more than people can far imagine.
Some people just don’t understand that when you have a debilitating chronic illness, looking after yourself really is a full time job!
Next time you think about saying how lucky we are to stay in bed all day, remember that it’s soo much more than that.
Sending all my love,