When Your Body Can No Longer Support Your Need to Work

I haven’t written much to my name in the last few years. When there’s a direct line from a client’s bank account to yours, you can get pretty awesome at writing other people’s stories – fiction or nonfiction. What I write under pseudonyms sells just enough to send back a couple of euros every few weeks, and I doubt it would do any better if published under my real name.

But when I was working I loved my work. All of it! Keeper of social media account passwords, writer, researcher, editor, marketer, teacher assistant, remedial tutor, creative writing instructor, mover of furniture, taster of recipes, first ear of friends’ music, first reader of friends’ manuscripts… ah, I get carried away! I love life, art and love.

But by September/October 2017, I could hardly remember my own name let alone work out my daily meds. And so I took a step back rather than let clients down, or disappoint friends. It wasn’t really a choice, more of a stark realization that I wasn’t all there and my body couldn’t handle it.

There comes a time in the life of many people living with lupus or chronic illness when your body just cannot support your need to work, the things you love — even when for example, you rely on these to earn your living and/or support a family.

Losing your ability to earn a living can be devastating for many reasons. One, is of course the straightforward – where’s the food, shelter, clothing going to come from? Without employment adjacent insurance and benefits you’ll worry about paying for your own medical care. But you’ll also feel keenly the loss of identity attached to your work, including work friendships, associations and the like.

I mentioned my writing first because I made a decision to earn money from my writing in a way that didn’t give me recognition beyond a paycheck. It took a while but I accepted and appreciated that the paycheck helps to make the ends meet. There’s really no shame in that, though I have doubted myself countless times in the last few years.

I am, therefore, not new to the idea of a shaken concept of identity when it is based on creativity and intellectual rights. Having to give up my job(s) because my body couldn’t handle it felt like a distant second compared to the first. But imagine countless others who have to step off the plate of being doctors, nurses, teachers, chemists, chefs, architects, farmers, pilots, military men and women, sometimes even from being fulltime moms and dads, and you can add to this endless list!

While insurance, early pensions, disability packages, side investments, etc. can help make the impact less, more likely than not, many are found unprepared when chronic illness strikes. Many struggle and flounder for years, hoping that the flare that finally floors you will be staved off forever. Many die on the treadmill, having spent themselves to the end. And many more have to watch their bodies fail them, their jobs and lives slowly sail past, often their families crumble and when they do not they carry the heavy load of keeping and caring for them.

Yes, I have painted a dark nightmare for people facing autoimmune or chronic illness.

But we can talk about it.