The Question No One Ever Asks About Life With Chronic Fatigue Syndrome

Have you ever felt unable to put an experience into words? As if the only way to truly get your thoughts across was to write about it?

That’s sort of how I’m feeling about life right now.

My life looks pretty good from the outside. In the last two months, I graduated with honors, began an internship, and started a business I’ve been dreaming about for over a year. On some levels, I know I should only be grateful that I managed to accomplish so much.

In the same two months, I have had nine doctor’s appointments, two remote consults, and will be going to at least one appointment per week for the next month. The other week, I was prescribed time off of work after feeling like I was on the verge of losing consciousness for most of the day, unable to focus and simply aware of the passing time.

What is it like to live with chronic fatigue? It’s the question no one ever asks, but it’s the story I want to tell.

You see, my average day is not, in fact, your average day:

1. 7:30, 7:31, 7:33, 7:35 – Attempt to not sleep through all four alarms, again. Lay in bed assessing your fatigue levels, knowing they’re never good, dreading the part where you have to use every ounce of willpower to drag yourself out of bed.

2. Get out of bed. Try to ignore the stiff, achy muscles, possible headache and crushing exhaustion you feel.

3. Eat breakfast. Oh, wait, first you need to drink your green energy supplement that tastes like dirt with a side of grass. Then you can eat. But what to eat? You’re tired of the same boring, savory meals, but higher carb breakfasts are likely to make you crash mid-morning. So, eggs it is.

4. Figure out what to wear. If you have enough mental clarity to pick an outfit in under five minutes, good for you! Especially since you’re running late. Again.

5. Rush out the door and drive to your job, completely missing how beautiful it is outside.

6. Arrive at work. You might be feeling slightly less asleep at this point. Maybe. Sip some coffee, even though it doesn’t help. Maybe you have enough energy to use the standing desk for part of the day, maybe not.

7. Smile and crack jokes, knowing your illness is invisible to those around you.

8. 10:30 a.m. – Have a snack because you’re starting to feel shaky and lightheaded and it’s hard to think. Don’t forget to eat something high-protein and low-carb. Otherwise, guess who’s going to experience low blood sugar in an hour or two?

9. 12:30 – Lunch time! Simple enough. Just ensure sure it’s free of dairy, gluten, soy, corn, processed oils, additives, added sugar and that your meat and veggies don’t have any added pesticides or hormones and antibiotics.

10. 3:30 p.m. – You don’t even have to look at the clock. You know what time it is because a new wave of exhaustion always hits at this time, and all you want to do is take a nap. But you can’t. Maybe you need to check the mail, but you don’t want to, because it means walking up and down two and a half flights of stairs and your body feels like it’s weighted down with stones.

11. Why did I walk into that room again? I can’t remember…

12. 5:00 p.m. – Leave work. Sometimes you want so desperately to doze at a stoplight on the way home, but you know that’s not an option.

13. Arrive home. Shouldn’t I help with dinner? Don’t I need to work on my business? Or maybe I should clean up the clothes in my room…but first, sleep. Throw yourself on your bed and nap. (But don’t forget to set your alarm.)

14. Alarm goes off. Why does it feel like you got hit by a train? Contemplate falling back asleep, even though it’s nearly 7:00 p.m.

15. Spend time waking up. Again. Eat dinner, clean up. You’re glad your parents are making most meals, because you barely have the energy to clean up for 15 minutes, much less cook an entire meal. Recognize that most people do not have this luxury.

16. How did it get to be 8:30? You had considered meeting up with someone, but you also still need to clean up those clothes and work on business stuff. And you should probably check in on your friend who you haven’t talked to in a while. So many things to do…

17. 9:15 – You did none of those things and watched a TV show instead because that takes the least amount of effort. Then you get into bed early. Again.

18. Don’t forget to take your supplements – but wait, you’re almost out? Better order more, even though they eat into your bank account.

19. If you’re lucky, fall asleep within 30 minutes instead of the all-too-common three hours with the knowledge that another tough morning is around the corner.

Unless you also live with chronic fatigue or chronic illness, you cannot understand. You can try to empathize, you can offer what usually ends up being, if I’m completely honest, paltry advice. You can pity me all you want, but you cannot know what it means to live with this.

Is it always that bad?

No. Sometimes it’s better. Sometimes I have the energy to relax at the pool after work, or go on a short walk, if I’m lucky. But more often than not lately, it’s worse.

Even as I finish this post, I am sitting down because I don’t trust myself to stand up for longer than a few minutes. When walking, all I can concentrate on is putting one foot in front of the other because I feel unbalanced. My hands are experiencing tremors, even after eating. My eyes are tired, and I have to fight myself to stay awake. I think the only reason I’m able to able to write somewhat coherently is because I’ve played this one-sided conversation over so many times in my head, it has become a part of me.

This is my reality. Chronic fatigue, and the symptoms that come along with this unknown condition, is my reality. It may be old news to my friends and family, and they may even forget about my condition because I try to pretend I’m normal at work, but I wake up every single morning unsure of the energy available to me that day.

Let me be very clear here: I don’t want your pity. I don’t want to hear your attempts to empathize with how tired we are, because you can’t. And finally, I don’t want your silence.

I want understanding. Understanding when I have to cancel that outing, when I can’t make dinner, when I don’t respond to your texts and when I’m late to work again. Understanding that when I’m irritable, I try not to be but sometimes it can’t be helped. Understanding that sometimes I’m afraid to catch up with an old friend because it leads to the inevitable, “How are you doing?” question that results in lying or oversharing. Understanding that I want to go back to being the same person I was, with the same personality I had before the illness began, but that I can’t because I am no longer that person.

And believe it or not, I want questions from those closet to me. Something along the lines of:

“How are you feeling today?”

“How have you been lately?”

“Got any upcoming doctor’s appointments you want to talk about?”

Or even something as simple as, “I want you to know that I’m here for you.”

The silence is one of the hardest parts. Do people not ask because they’re tired of hearing the same thing? Is it because they forget? Or maybe they’re too scared to ask?

I just want to be able to talk without feeling like I have something contagious. I’m not asking for everyday check-ins, or for my friends to become my personal counselors. I simply want a chance to fit in with society again.

“…I will not cause pain without allowing something new to be born…” – Isaiah 66:9

My hope is that one day, we can feel ourselves getting stronger instead of weaker.

Photo by Olayinka Babalola on Unsplash