Health and wellness touch each of us differently. This is one person’s story.
“We all get tired. I wish I could take a nap every afternoon too!”
My disability lawyer asked me which of my chronic fatigue syndrome (CFS) symptoms was impacting my daily quality of life the most. After I told him it was my fatigue, that was his response.
CFS, sometimes called myalgic encephalomyelitis, is often misunderstood by people who don’t live with it. I’m used to getting responses like my lawyer’s when I try to talk about my symptoms.
The reality is, though, that CFS is so much more than “just tired.” It’s a disease that impacts multiple parts of your body and causes exhaustion so debilitating that many with CFS are completely bedbound for varying lengths of time.
CFS also causes muscle and joint pain, cognitive issues, and makes you sensitive to external stimulation, like light, sound, and touch. The hallmark of the condition is post-exertional malaise, which is when someone physically crashes for hours, days, or even months after overexerting their body.
The importance of feeling understood
I managed to hold it together while in my lawyer’s office, but once outside I immediately broke down into tears.
Despite the fact that I’m used to responses such as “I get tired too” and “I wish I could nap all the time like you do,” it still hurts when I hear them.
It’s incredibly frustrating to have a debilitating condition that’s frequently brushed off as being ‘just tired’ or as something that could be fixed by lying down for a few minutes.
Dealing with chronic illness and disability is already a lonely and isolating experience, and being misunderstood only increases those feelings. Beyond that, when medical providers or others who have key roles in our health and wellness don’t understand us, it can impact the quality of care we receive.
It seemed vitally important to me to find creative ways to describe my struggles with CFS so other people could better understand what I was going through.
But how do you describe something when the other person has no frame of reference for it?
You find the parallels with your condition to things people understand and have direct experience with. Here are three ways I describe living with CFS that I’ve found particularly useful.
1. It feels like that scene in ‘The Princess Bride’
Have you seen “The Princess Bride” movie? In this classic 1987 film, one of the villainous characters, Count Rugen, invented a torture device called “The Machine” to suck the life out of a human year by year.
When my CFS symptoms are bad, I feel like I’ve been strapped to that torture device with Count Rugen laughing as he turns the dial higher and higher. Upon being removed from the Machine, the hero of the movie, Wesley, can barely move or function. Similarly, it also takes me everything I have in order to do anything beyond lay completely still.
Pop-culture references and analogies have proven to be a very effective way of explaining my symptoms to those close to me. They give a frame of reference to my symptoms, making them relatable and less foreign. The element of humor in references such as these also helps ease some of the tension often present when talking about illness and disability with those who don’t experience it themselves.
2.It feels like I’m seeing everything from underwater
Another thing I’ve found useful in describing my symptoms to others is the use of nature-based metaphors. For example, I may tell somebody that my nerve pain feels like a wildfire leaping from one limb to another. Or I may explain that the cognitive difficulties I’m experiencing feel like I’m seeing everything from underwater, moving slowly and just out of reach.
Just like a descriptive part in a novel, these metaphors allow people to envision what I may be going through, even without having the personal experience.
3. It feels like I’m looking at a 3-D book without 3-D glasses
When I was a child, I used to love the books that came with 3-D glasses. I was enamored by looking at the books without the glasses, seeing the ways the blue and red inks overlapped partially but not completely. Sometimes, when I’m experiencing severe fatigue, this is the way I envision my body: as overlapping parts that aren’t quite meeting, causing my experience to be a bit blurred. My own body and mind are out of sync.
Using more universal or everyday experiences a person may have encountered in their life is a helpful way to explain symptoms. I’ve found that if a person has had a similar experience, they’re more likely to understand my symptoms — at least a little bit.
Coming up with these ways to relay my experiences to others has helped me feel less alone. It’s also allowed those I care about to understand that my fatigue is so much more than being tired.
If you have someone in your life with a hard-to-understand chronic illness, you can support them by listening to them, believing them, and trying to understand.
As we open our minds and hearts to things we don’t understand, we’ll be able to relate more to each other, fight loneliness and isolation, and build connections.
Angie Ebba is a queer disabled artist who teaches writing workshops and performs nationwide. Angie believes in the power of art, writing, and performance to help us gain a better understanding of ourselves, build community, and make change. You can find Angie on her website, her blog, or Facebook.