The Mighty Logo

If You're Wondering What It's Like to Live With Myalgic Encephalomyelitis

The most helpful emails in health
Browse our free newsletters

Imagine you have the flu. You’re stuck at home, spending a lot of the time in bed. Fatigue, muscle aches, headaches, lightheadedness (to name just a few of your symptoms). Physically you feel like death and mentally you’re completely down in the dumps. Not much fun, huh?

However, you know that it’s the flu. Yes, it’s not much fun. You have jobs piling up and you have to miss your best friend’s birthday party. But you know that in a week, maybe two at worst, you will be fit and fighting once again, ready to take on the world.

But now imagine that flu doesn’t end. You’re not better in a couple of weeks. Instead, it lasts years, decades with little hope of ever recovering.

Sound unbelievable? Well, that’s what it’s like to have myalgic encephalomyelitis (ME).

Imagine what it is like to feel all these symptoms 24/7, 365 days (and nights) of the year and have little hope of recovering. To not be able to work. To miss every single friend’s birthday party year after year.

And because this is your life, because you have these symptoms all the time, you have to try and somehow live with them.

Admin jobs piling up? You can’t wait a couple of weeks till you’re better because, spoiler alert, you won’t be. You have to do them while you’re feeling ill.

All the jobs you have to do in a normal life, you have to try and do while you’re feeling ill.

You struggle through activities like showering and eating, trying to keep on top of simply being alive.

Then there are the routine jobs such as doctor’s appointments, dentist appointments, remembering birthdays. These jobs don’t give a break to people with ME.

And then there is fun stuff. Well, stuff that should be fun. And as these symptoms are your life, you know that you must try and do the occasional fun thing because what is life for if we can’t get some enjoyment from it?

So you see friends, family, maybe even go to a café and you paint on your smile because you’re supposed to be having fun – even if the fatigue and pain is screaming in the background.

Don’t get me wrong. Sometimes it’s not this bad. People struggle at different levels with ME. Some are able to work (albeit with difficulty) but the vast majority are not.

And some days are better than others. Some days, I can actually see a friend for 20 to 30 minutes and enjoy it without struggling too much (just don’t ask me how I’m feeling the next day).

But, if you know someone with ME and you hear them moan, don’t turn your nose up. Imagine how you’d feel (both physically and mentally) if you had flu forever. Don’t ignore them. And don’t try to give advice. Don’t tell them they should get out more. Instead, simply listen. Believe them and offer sympathy.

Because you don’t know how hard life is for them. They are fighting behind closed doors every day to simply keep going.

Getty Image by sam thomas

Originally published: July 6, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home