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.
It’s been a while since I’ve written a blog post – four months, to be exact. The short explanation for this is that I got really busy. The long explanation, or more accurately the one I don’t really want to admit, is that I’m scared of what I’ll end up writing.
My life looks pretty good from the outside. In the last two months, I graduated with honors, began an internship I enjoy, started a business I’ve been dreaming about for over a year, and have joined a new church in the area.
In the same two months, I have had nine doctor’s appointments, two remote consults, and have at least one appointment per week scheduled for the next month. Two weeks ago, I was prescribed time off of work after feeling like I was on the verge of losing consciousness for most of a workday, unable to focus and only 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:
- 7:30, 7:31, 7:33, 7:35 – Attempt to not sleep through all four alarms, again. Lay in bed and assess 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.
- Get out of bed. Try to ignore the stiff, achy muscles, possible headache and crushing exhaustion you feel.
- 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.
- 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.
- Rush out the door and drive to your internship, trying to forget how miserable mornings are.
- Arrive at work – you might be feeling slightly less asleep at this point. Sip some coffee, even though it doesn’t help. Hopefully you have enough energy to use the standing desk, but if not, sitting it is.
- Smile and crack jokes, knowing your illness is invisible to those around you.
- 10:30 am – Have a snack because you’re starting to feel shaky and light-headed 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?
- 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/antibiotics.
- 3:30pm – You don’t even have to look at the clock. You know what time it is because a new wave of exhaustion always hits, 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.
- Why did I walk into that room again? I can’t remember…
- 5-5:30pm – Leave work. Sometimes you want so desperately to doze at a stoplight on the way home, but you know that’s not an option.
- 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. (Don’t forget to set your alarm.)
- Alarm goes off. Why does it feel like you got hit by a train? Contemplate falling back asleep, even though it’s nearly 7:00pm.
- 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.
- How did it get to be 8:30? You had considered seeing a friend, but you also still need to clean up those clothes and work on business stuff. And you should probably check in on *insert name* to see how their first day in a new job went. So many things to do…
- 9:15-9:45pm – 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.
- Don’t forget to take your supplements – but wait, you’re almost out? Better order more, even though you hate how expensive they are.
- 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.
Do you think I’m exaggerating? If so, I would ask you to take a step back and check yourself. Unless you are a fellow chronic fatigue sufferer, 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, and I’ve had short periods where I’ve felt a little better. Sometimes I have the energy to relax at the pool after work, or go on a short walk. 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, are my reality. It may be old news to you, and you may even forget because it’s so easy to when I act like everything is normal, but I wake up every single morning unsure of the energy available to me that day.
Let me be very clear here: I believe I can speak for all chronic fatigue sufferers when I say we don’t want your pity. We don’t want to hear your attempts to empathize with how tired we are, because you can’t. But it may surprise you to hear that we also don’t want your silence.
We want understanding and forgiveness. Understanding when we have to cancel that outing, when we can’t make dinner, when we don’t respond to your texts and when we’re late to work again. Understanding that when we’re irritable, we try not to be but sometimes it can’t be helped. Understanding that sometimes we’re afraid to catch up with an old friend because it leads to the inevitable “how are you doing?” question that results in either lying or over sharing. Understanding that we want to go back to being the same person we were, with the same personality we had before the illness began, but that we can’t because we are no longer that person.
And believe it or not, we crave questions. Something along the lines of, “How are you feeling today?” Or “How have you been lately?” or “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 uncomfortable asking because it may remind me that I have a chronic illness?
The only person reminded of anything is the questioner, because believe me, I never forgot. I don’t have to be reminded because I carry the knowledge of my illness with me every day.
I’m not asking for constant check-ins, or for friends and family to become my personal counselors. But I don’t like seeing the way people tiptoe around me.
I read an article written by Shoshana Akabas, a lecturer at Columbia University. Her story is a little different because she has been given a diagnosis of Lyme’s Disease, but I’m going to share a small part of her story because she put into words something I’ve had trouble voicing:
“I hear these lines all the time, and I’ve learned to politely smile and thank people for their kind words. But while it’s helpful to know that I can pass for normal, hearing that I seem fine when I’m painfully aware every second of every day how my brain is malfunctioning creates a chasm between what others see and what I know to be true. It makes me feel very lonely in my under-oxygenated brain.
I know people say these things because they want them to be true (you seem better) or to sound encouraging (you’ve accomplished so much despite being sick), but it makes me feel like they don’t believe how bad it is. Which makes me distrust myself — just like the many doctor appointments, where people I was supposed to trust told me I was depressed, told me I just needed to toughen up…”
A part of me feels guilty for writing this post, because it may shock some people. But then I remind myself that I can’t be responsible for how my illness makes others feel, and if my speaking the hard truth makes you uncomfortable, well, good. It’s terrifying to be so vulnerable, but I feel more at peace after writing this than I have in a long time. Our voices need to be heard.
If you’ve read through the whole post, thank you on behalf of myself and of all of us with chronic illness.
“I will not cause pain without allowing something new to be born.” – Isaiah 66:9
My hope is that one day, I will finally feel myself getting stronger.