Warning: Low Battery (what living with chronic fatigue is really like)

Healthy vs. Chronically Ill “Batteries”

If you’ve spent any time in the chronic illness community (or if you’ve spent any time reading my blog–thank you, by the way) then you may be familiar with the Spoon Theory.

And while the Spoon Theory is a decent analogy to help non-sick people understand the energy crisis that Spoonies live with every day, there’s actually a better analogy that I’ve seen floating around the internet lately.

Instead of counting “energy spoons” you can think of your personal energy and ability levels as a phone battery.

Using this picture, you can imagine that a healthy person’s “battery” may get low if, for example, they’re sick with the flu, or they’re eating Taco Bell 3 meals a day, or they’ve been getting less sleep than normal, or they’re stressed out from responsibilities at work or school.

Their battery is running a little low but, with enough emotional and physical support, that healthy person can return to a full battery within a relatively short amount of time.

In contrast, a person with an illness like chronic fatigue syndrome (CFS), lupus, Lyme disease, dysautonomia, fibromyalgia, etc. has a very different kind of battery.

No matter how much they sleep, no matter how healthy their diet is, and no matter how much meditation they do, their battery will never be at 100%. It might max out at around 35% regardless of how long they let their body “recharge.”

Have you ever had a real phone battery that was so old that it wouldn’t hold a charge for very long? You have to constantly leave it plugged into the wall and even then it won’t climb past 40% battery…it’s really frustrating!

This is the kind of internal battery that Spoonies live with every day. Our physical and emotional stamina is extremely limited and fragile. Because of this reality, our calendars tend to look like this…

spoonie-calendar-image-e1539043150705.jpg
Image courtesy of @spoonie_village on Instagram!

Most healthy people can’t relate to this concept because their body’s default mode is a state of health. Their body can always return to 90 or 100% energy levels if they just spend enough time and care on their physical and emotional needs. Because of this, they assume that people with chronically sick bodies can do the same.

Unfortunately, this isn’t the case.

We people with certain chronic illnesses don’t have the ability “bounce back” the way most healthy people do. Our bodies have lost the ability to be adaptable, so getting knocked down by an illness or getting worn out from an event is a really big deal.

What’s even harder about having a chronic illness is that not only does your battery recharge less efficiently than a healthy person’s battery, but your battery also drains a lot faster than a healthy person’s battery does.

While a healthy person may be wiped out after a weekend of skiing in the mountains or after slaving away over a 50-hour work-week, a Spoonie is wiped out after a simple trip to the grocery store or after attending a friend’s two-hour birthday party.

It takes a healthy person one or two days to recover from their ski trip, but it may take a Spoonie a full week to recover from a single social event.

Basically, it all boils down to this little graphic I whipped up:

How chronic Illness batteries are different. In-blog image.

Bonus: How Can You Help the Spoonie in your Life?

I hope that learning the concept of “chronically low batteries” will help healthy people to better understand their family and friends who are Spoonies. Maybe this will even help some Spoonies better understand themselves.

But if you have a Spoonie in your life you still might not understand how you can help them out when their batteries are running low. Here are a few ideas:

1. Just Believe Us

This might seem like a “duh” thing, but there is a shocking amount of disbelief and skepticism directed towards people in the chronic illness community. People who aren’t sick sometimes think that they know our bodies better than we do and they want us to “push our limits” by doing more things.

Even if it comes from a genuinely good place, when someone says “are you sure you can’t do XYZ” or “come on, I bet you can do it!” all a Spoonie hears is: “I don’t believe that you’re really as sick as you say you are. Try harder.”

So, when we say “I’m too tired to do that” or “doing XYZ will cause a flare, I can’t do that today,” just believe us and don’t try to talk us out of our illness. We know our bodies and our limitations better than anyone else.

2. Please Invite Us, Even if We Can’t Go

You might feel like there’s no point in asking your Spoonie friend or relative to join you for a social event or an outing because they always say “no, I can’t do that.”

I understand why this would feel discouraging. However, a lot of Spoonies still want to get an invite just to know that you’re still thinking of them. And if they’re having a super good health day they might even say “yes!” to your invitation.

Or if you really want to make them feel included, you could try modifying the event to fit their needs. Obviously, this isn’t always possible but a little bit of thoughtfulness can go a long way.

3. Try not to be Offended by Our Boundaries

Even if it feels like a Spoonie doesn’t like you because they keep saying “no” to your invitations, that’s probably not the case (unless you’re really annoying or something, then that might actually be the case, sorry!).

Our low batteries force us to become very picky about when and how we spend our precious energy, so we often have to say “no” to a lot of stuff.

Please don’t take offense to this because we don’t mean it as an insult. The truth is that we probably really want to go with you and it makes us sad that we can’t.

When we say “I can’t go,” it’s nice to just respond with “Ok. I wish you could. Maybe next time!” and leave it at that.

No offense implied, no offense taken. Everyone wins!

 

Thanks for reading!

Love,

Em the Silver Spoonie

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