The other day I was struggling, as many of us with chronic illness do, to explain myself to a friend. As usual, I had to give up. I can’t explain to her why it’s not easy for me to drive in and out of my nearest city (an hour’s drive each way, a quarter of which is on narrow, twisty rural roads) several times — or even once — a week. I’ve tried using the spoon theory, which makes a lot of sense to me, but I don’t seem to be so good at explaining it to others. And people often don’t want to or have the time to follow links and read articles that you send them.
I don’t claim to have invented the battery analogy. I’ve seen it many times before, particularly in connection with myalgic encephalomyelitis (ME), the neurological disease I live with. But today, possibly because I recently got a new laptop with a much longer-lasting battery than its predecessor, I suddenly felt like I could use it to make a good explanation of what it’s like to have ME and other chronic illnesses — something to show to our friends and family members to help them understand.
Imagine two laptops, smartphones or tablets. Both have a battery. Each battery can only recharge once in a 24 hour period. One has a charge lasting for 20 hours, the other five hours. This is a person with ME versus a healthy person.
But it gets more complicated. There’s something called boom and bust. Imagine a person with ME wants to go away for a weekend and be out of bed for 14 hours a day for three days. I’m planning to do this myself in a couple of weeks. I will be attending a conference: having breakfast in the hotel with friends, going to talks during the day and having dinner together in the evening. But that means you need to find 27 extra energy hours somewhere.
Maybe you can use some of those backup battery packs? Maybe you can get five hours out of each of them. So six of them should be more than enough, with a few extra hours for emergencies. But they all need to be recharged overnight (19 hours) also.
And you only have one charger!
So in order to add those 27 extra hours to your weekend, you are going to have to spend 114 (19 x 6) extra hours in bed. This will obviously have to come out of the five hours a day when you are currently not resting. You do the math! (I was being rhetorical there, I am actually going to do the math.)
114 divided by 5 is almost 23.
Twenty-three — that’s how many days, at minimum, you will have to spend in bed to recover from your three days of activity.
More than three weeks. And I am actually being conservative with the figures here. You could easily add another week to that. And some activities will use up the batteries faster than others, making your energy debt even greater.
That’s how it works. And, although I am writing from my own experience as a person with ME, it often works the same way for many other chronic illnesses.
So next time you see a chronically ill person attending a party, going out for a day or even having a weekend away, try not think to yourself, “They must be getting better/they can’t be that bad really/how come they can find the energy to do the things they really want to do?”
Instead, do the math. Your chronically ill friend will still be paying the price days, weeks or months afterwards— long after the party, event or holiday has faded from your memory.