The Problem With Saying, 'The More You Do, the More You'll Be Able to Do!'

Obviously, limits are not the same for everyone, and even within the same diagnosis, the same illness, they differ. It’s even different within a same person!

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

I was never really healthy, but was kinda normal until I hit a (health) wall in 2003.

I was working full-time, balancing a regular job to pay the bills while doing a few contracts on the side in event production. I also had dancing classes, was involved in politics, would go out with friends to see shows, go to the movies… I would always find time to do more stuff, always busy!

Until that day I caught a bug at work, and it brought me down. I never was healthy again.

My hypermobile Ehlers-Danlos syndrome got out of the closet and, at that time, it was mostly the dysautonomia which took front stage. For years I could barely stand up without fainting.

No more work, no more friends, no more going out anywhere except to see the doctor.

Years passed.

In 2010 I finally got both my hEDS and POTS diagnosis, and meds to help with it. I got slightly better, yet couldn’t work, except some volunteer work, a little bit here, a little bit there, never anything stable.

On good days, when I would do some volunteer work, or simply go out to see a show or clean or cook, I would ask myself, hey, maybe I’m really better, maybe I’m well enough that this could be it? And I’d try to sustain whatever I was doing: go see more shows, do more in the house, start new projects I had forever put on a shelf.

Inevitably, I would crash.

Along the years, many people told me, “You just have to start working. Once you start, you’ll be fine, and the more you do, the more you’ll find yourself being able to do!”

I felt it was a bit like saying I had decided not to do anymore in 2003, like it had been a choice… and that it was a choice not to work anymore. Still, each time I felt better, it tugged at me.

Last year I started working freelance, only a few hours a week (not every week), at my own pace, at home. And, without meaning to, I put that saying to the test.

So… was I able to do more?

Well, no. Not one bit.

First off, the energy it takes me to work means I don’t have anything left for house chores, or socializing. If I had a doctor’s appointment (like we with chronic illness often do!), I couldn’t work that day.

I love my job, I love being able to contribute financially and feeling useful. But my energy limit is the same and I always have to choose between house work, going out (be it for fun or medical) or working. Even after a year, I’m still not
able to do more in one day. Well, sometimes I can do more, like work two hours in the morning and go to the doctor in the afternoon, but the more this happens, the less productive I become and the more symptoms flare up.

I recently had the great luck of having a few clients send me a bit too much work. Or, let’s say, more than I usually do (and I was silly enough to accept). So I had to do more hours, every day, without rest days.

So… was I able to do more then?

Technically, yes. For a while. As in: I did do more hours for a while. But I did nothing in the house (my boyfriend had to take care of everything – I’m so lucky to have him!), I had to cancel pretty much all my plans, and since I couldn’t work on days when I had medical appointments I had to work on weekends, so really no rest days.

Which in turn meant that, after a few weeks, I ended up less and less productive, with more dislocations, more near-fainting episodes, more pain, more headaches from my blurry vision and simply weaker and exhausted. I could do nothing else in my day. I would wake up late, start working, take a break to rest, work some more and eventually have to stop and rest until I went to bed, early. Too tired to do anything. And in the end, I had to abandon a contract I had started, something I had never done before, because I was too sick to work at all and could barely stand up.

So… no.

It’s not always a question of will, and doing more does not always lead to doing more. If you are healthy and training for a marathon, then yes, I’m pretty sure the more you run, the more you’ll be able to run. But this kind of advice isn’t right for everyone.