Invisible Illness Awareness Week 2015 starts Monday, September 28, and runs through October 4.
Note: This post is about chronic fatigue secondary to other chronic health conditions. Secondary chronic fatigue is not to be confused with the poorly understood, systemic neuroimmune condition referred to here in the US as ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).
Have people not believed you when you said you were sick? Do you know someone who says they have a chronic health condition, but don’t look or seem sick to you? Do you hide the fact that you're ill so you won't have to hear insensitive comments? “But you don’t look sick!” is one of the greatest hits for many chronically ill people when I ask about misunderstandings related to their condition. It’s very hard for a lot of people to understand how someone could look normal on the outside, and still be very sick. Yet most chronic illnesses—maybe up to 96% of them—are considered “invisible illnesses.”
An invisible illness or disability is one that shows "no outward signs." Some people include a lack of mobility aids in that definition, but as someone who looks mostly fine and only uses a cane part time, utilizing a mobility aid doesn’t necessarily make you any more convincing to people who don’t understand your condition.
For those of us who live with invisible illnesses, we are each fighting an invisible fight. The greatest challenge in my invisible fight is chronic fatigue. There’s plenty of other stuff I have to deal with—tachycardias; chronic daily headaches that include, but are not limited to, migraines; spontaneous dislocations and subluxations; skin problems; wildly fluctuating body temperatures; allergic reactions to things I’m not actually allergic to; constant, widespread pain of varying types and intensities; sweating profusely and nearly passing out every time I stand for more than 10 minutes; brain fog; medication side effects, and more! And yes, I know exactly how ridiculous that all sounds—but the clear front runner in Ways My Body is Absurd, is the constant, nagging, life-ruining chronic fatigue.
I only recently realized that when I say, “I’m tired,” most people have absolutely no idea what I’m talking about. I had to Google: “how to explain how tired I am,” because I had no language to even describe it. That’s when I found The Spoon Theory—the most accurate explanation I’ve found of what living with chronic fatigue is really like. Using spoons to represent her limited energy resources, Christine Miserandino explains what living with chronic fatigue is like as a young woman with Lupus. Her analogy has made its way around the internet, and into the vocabulary for many of us living with chronic fatigue.
This isn’t your run-of-the-mill, stressed out, not sleeping enough fatigue. This is indescribable, immobilizing, almost can’t lift my head off the pillow chronic fatigue. If you don’t live with one of the many chronic conditions that can cause chronic fatigue, you might have felt this level of fatigue briefly while dehydrated and sick with the flu—the kind of fatigue where you’re so tired it hurts and you start to wonder if you might die—but at the end of that brief illness, you got to walk away and continue living your life. I don’t get to do that; I have to walk through my life with this albatross around my neck, constantly trying to balance getting enough rest with meeting even my most basic needs. The most cruel part is that there really does not seem to be such a thing as “enough rest” for my body, yet ignoring that need for more rest can have catastrophic consequences.
It started slow, but over the years it has snowballed, taking more and more of my life away. Thanks to this fatigue, I haven’t been able to work full time in over three years; back in April, I had to quit a part time job of 20 hours a week (working 10 of those hours from home) because the fatigue, and my body’s response to the stress of not getting adequate rest, made it impossible to keep up. I continue to do freelance work, but even that is very difficult when deadlines never quite line up with my “good” days.
Caffeine helps only very slightly, but it’s a constant struggle to find the sweet spot where I can ingest enough to wake me up a bit, but not so much that I aggravate my cardiac issues--I’m beginning to think that sweet spot doesn’t even exist for me anymore. I’m on a medication that helps a little, but decreases the efficacy of the oral contraceptive pills I take to control some of my other symptoms, thereby aggravating those symptoms that had previously been somewhat controlled. What little energy I am able to get from these drugs is usually overshadowed by the crushing post exertional fatigue I experience as a result of pushing my body past its own limits. It’s a trade off; have energy for a few hours to get some stuff done, feel extra terrible later, and for days to come. It’s especially fun that I can’t seem to take it more than two or three days in a row, or I’ll just be immobilized by exhaustion, but also completely unable to take a nap. Did I mention it’s made it really hard to fall asleep at night too? I know I said it was helping a bit, but it may actually be a net loss.
One of the most difficult aspects of living with this kind of fatigue, and with invisible illness in general, is that the intensity of our symptoms are often variable and unpredictable; some days you get more spoons than others, but never as many as you would like. People often only see us on those better days, and get confused when we’re unable to do something similar on another day. They also don’t realize that different “activities” have different energy requirements—I use the term “activities” loosely, because many things take so much more from us than most people could imagine. It’s unlikely that most people would consider walking to the bathroom an activity, but there are a lot of days where I might as well be climbing a mountain. Most 28-year-olds don’t need to worry about driving somewhere and not being able to get home because they’re too tired. Even on my better days, I have to shower at night so I can lay down for several hours afterward.
Chronic fatigue is often misinterpreted as laziness, and I’ve been on the receiving end of a lot of that skepticism. Very often, we are accused of faking or exaggerating symptoms like this. We might be lying sometimes, but it’s generally the other way around; we lie to hide how sick we are, and push our bodies beyond their limits to our own detriment. Lies like this happen because it’s embarrassing for many of us to admit that we can’t keep up, and too painful to be denied our reality—yet again—by people who don’t believe us.
So the next time you feel compelled to tell someone they “don’t look sick,” I hope you’ll reconsider. And if you’re on the receiving end of such a sentiment, whether the intentions were good or bad, at least know you’re not alone for feeling hurt or wanting to punch that person in the face*.
What's your Invisible Fight? What are you fighting for, and what are you fighting against?
*In Sickness + In Health does not condone punching people in the face!