Not Being Able to Work Due to Illness Is Not a 'Permanent Vacation'

For those of you who can’t work due to illness, you’ll understand the struggle, but for those of you who are able to work, I feel like sometimes you don’t quite understand or get the struggles that come with having your freedom and old life taken away from you.

I get a lot of throwaway comments such as:

“You’re so lucky, I’d love to be able to lie in every day.”

“You’re basically on a permanent vacation.”

“Surely there’s some kind of work you could do.”

These comments could not be far enough from reality and the truth! I thought this would be my chance to explain to the people who have never been in my situation and don’t fully understand the struggles people like myself go through.

I’ve gone from working a full-time job doing something I loved, to deteriorating so much I’ve not been able to work at all. I went from having independence and the freedom of driving myself around, to not being able to be left on my own and having my diver’s license taken away. This all happened in a very short period of time — I got really sick and my health deteriorated rapidly. I felt like I’d been robbed of my old life and I was once again living the life of a child, having to rely on my parents and my family to do basic things. I would not call this “lucky.” I would much rather not sleep in and be able to get up to go to work. I’d rather be able to bring my own money in to put food on the table. And believe me, if there was any sort of work I could do, I would. Unfortunately, this is not my decision and if I’m told not to work or drive by my specialist, then I haven’t got much choice in the matter.

It does get to me when people think because I’m sick, I shouldn’t have a life and be going out anywhere. Let me tell you, I spend the majority of my life either in bed or on the sofa feeling pretty rubbish and in pain. If I get an offer for someone to get me out of the house or take me away for a week, then I take it because there’s not much else in my life to keep me going. I feel like I get judged if I go on holiday or board a plane. My boyfriend recently took me to Ireland, which is an hour-long flight. Even though it’s such a short flight, I have to do so much preparation before I fly — medical letters, medical checks, requests for special assistance, requests to be able to take my liquid food on board, packing medications, feed, feeding pumps, tubes, syringes … the list goes on!

I guess what I’m trying to say is, the people who are unable to work due to poor health are not “lazy,” nor are they on a “permanent vacation.” They are in pain and struggling, many wishing they could work and live a normal life. They also shouldn’t be judged for going on a holiday or trip and taking a well-deserved break away. I also need a break from my mundane life of staring at four walls.

To the people who are struggling and feel judged — just know you are not alone!