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It's Hard to Have a Social Life When You're Chronically Fatigued


Several months ago I was diagnosed with a rare genetic disease called Ehlers-Danlos syndrome (EDS). It has explained so many of my chronic illnesses — my fibromyalgia, early-onset osteoarthritis in my spine and knees, irritable bowel syndrome, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS) and so much more.

It also explains the completely life-stopping fatigue. The utter and complete exhaustion that makes simple tasks seem huge and daunting. I’m not naturally a messy person (debatable, I suppose), but the thought of straightening your home alone is tiring, so the mess just grows and grows and grows until it’s insurmountable, and the fatigue has you so low that you can’t even begin to tackle the mountain that is the pile of laundry and random detritus in your room, and so… you don’t. You just don’t. And you find yourself not inviting people over, not allowing anyone inside, and just pushing aside the pile of clothes, nail polish, and remote controls on your bed to have a place to sleep.

This is not laziness. This is fatigue.

After an eight-hour workday, you just don’t have it in you to do anything else but rest for another eight-hour workday. And after a 40-hour workweek, you have nothing left in you, so you rest up for your next 40-hour workweek.

This is fatigue, and it’s very, very real.

But what do you do when you’re fatigued and lonely?

You push yourself.

You push yourself beyond your limits, and you push yourself to do things that you’re too exhausted to do. You’re too exhausted to clean your house, but you push yourself to go to dinner with your friends while you pretend you’re not nodding off while chewing your breadstick. You push yourself to go to the beach with coworkers, even though it not only physically hurts you to walk through the sand and be crashed into by waves, but you’re sapped from the 40-hour workweek you all just had together, and while this is supposed to be a relaxing trip, just the acts of getting to your spot, setting up, and rubbing sunscreen onto the backs of your nearest and dearest coworkers have you drained, so you end up falling asleep in the sun and coming away from your trip sunburned a pretty shade of crimson, and more worn out than refreshed like you were supposed to be from a trip to the beach.

You volunteer to make food for potlucks when you can barely manage to feed yourself at home, much less a home-cooked meal. You go out for drinks until 2 a.m. even though you’re usually in bed by 9 p.m. You do the bridesmaid duties, you cover your coworker’s shift, you drink endless amounts of coffee so you can stay awake long enough to read the chapter and go to the book club. And when it’s all said and done, you eventually clean your house, running through it and getting as much done as quickly as humanly possible like a maddened tornado before you run out of steam because now it’s your turn to host book club next week, and no one could possibly be allowed to know how fatigue affects your ability to keep up your home. Nope. Not for a moment.

And in the end, what you’re really doing is not respecting the boundaries that your body has set for you.

How can you do that when you’re lonely because you’re always missing out — because you’re tired all the time? How do you balance the two?

How do you make sure that, between a 40-hour work week, keeping up your home, and feeding yourself healthy meals, that you also somehow manage a healthy social life?

You do this by having open, honest discussions with your friends and loved ones. Perhaps you can’t live a life of running around every weekend, but they’ll agree to a movie night in once a month. Something to help accommodate you. Because that’s what friends do, they accommodate other friends’ schedules, needs, and in this case, health conditions.

Honesty can be scary, especially when you’re talking about your health. Still, this is your health we’re talking about here. Running yourself ragged because you are afraid to be honest isn’t fair to you, or to your friends for taking away their option to be willing to accommodate you.

If they’re really your friends, and they love you, you’ll be surprised by what they are willing to do for you.