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How I Explain the Differences of Chronic Fatigue Syndrome and Depression With Art

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I see a psychiatrist once every couple of months to get medication for anxiety disorder. Inevitably we end up talking about everything happening in my life, including my coping with chronic fatigue syndrome (CFS). During these check-ins, she will frequently point out that many of the symptoms I talk about in having CFS are also signs of depression. Fatigue, exhaustion, weariness, exercise intolerance, difficulty sleeping, difficulty concentrating. Those are all things that can come with depression. I’m aware of this, believe me. I had a very serious depression in my early 20s. I remember it well, so it’s sometimes frustrating to constantly reassure caregivers I know the difference, and I need them to see me accurately.

Why is this important? Because accuracy in diagnosing mental health conditions is just as important as accuracy in diagnosing anything else. It affects what drugs you’re offered, what care you have access to, and whether and if you get better. Part of the issue that comes up with a CFS diagnosis and management is how many patients are initially told they’re just depressed, and that depression meds are all they need. This lazy and careless handling of CFS patients has caused a great deal of damage. We need to work harder at understanding the experience of CFS – whether a patient’s experience includes depression, or doesn’t.

This is how I explain it to friends and family, and how I explained it to her today.

“It’s like if your mood is a canvas,” I said. “Every day you wake up, and your canvas is blank. A fresh surface to paint upon.”

“By the end of your day, it’s full of imagery based on the feelings and experiences you had throughout your waking hours. Maybe a difficult interaction with a co-worker leaves a dark and brooding bit of color in one corner. Maybe a phone call with great news leaves a bright splash of color. Maybe the rest of your day was pretty average, and your canvas has a big swath of neutrals through the center. You wake up the next morning and the canvas is mostly blank again. Maybe a few things carried over a bit, but mostly your options are open, your potential for anything is back again.”

People always get this, it intuitively makes sense. I continue. “OK, so depression, for me, was waking up every day and my canvas was already black. Before the day had even started, before I’d had any experience to warrant a black mark, my canvas was already covered in black. I would spend the whole day just trying to overcome that, to feel anything other than what was already there. After a time, I only had energy to live with it.”

Usually heads are nodding by this point. Depression as a thing you carry with you, as a thing you can’t control, an inescapable weight. This makes sense to most people. But nowadays, here’s where I veer off: “Chronic fatigue syndrome, for me, is different. I don’t wake up to a black canvas. Instead, I wake up, my canvas is fresh and ready to go, but…I only get two colors. Before I was sick, I had access to a rainbow. A rich, complex palette of experience. These days, I get two colors. One is the color of fatigue, the other is pain. Everything in the whole day is filtered through fatigue and pain, and by the end of the day, that’s what I see. How much was I able to do through the fatigue and pain? How much was I able to feel through the fatigue and pain? Every color the world tries to add to my canvas gets fatigue and pain mixed in with it, and most of the time, I can’t see anything but those two colors.”

Today, she got it. She finally understood. It was such a relief to feel like I’d finally hit on the image that made it clear. It’s this reality that I’m grieving. This is why I “seem depressed” to a person seeing me every couple of months, like my psychiatrist. To my therapist, who sees me once a week, it’s clear that what is happening is not a depression coming in and making it so I don’t want to live my life, but CFS coming in to steal the life I very much still want to live. I still make lists of things to do, both mundane and adventurous. I still go to Antioch’s website frequently and dream about finishing my degree and someday having the professional life that so many of my friends enjoy.

I get teary when I talk about selling our little sailboat because all those adventures I’d dreamed of are still very much a part of what I want, crave and pine for in my life. And for many other things, I still want, I still crave, I still pine. The problem is, the energy to get those things just isn’t here anymore. I needed her to see the difference. Finally, she did.

The superstitious part of me needs to end this by explaining that, in clarifying the difference between depression and grief to my psychiatrist, I am by no means saying I’m somehow immune to depression. It remains a big fear of mine, and it’s unfortunately very realistic to be concerned about it recurring. I keep a sharp eye on trends in my mood, and have a health journal where I record what I’m noticing. When I’m really down, I ask myself questions used to diagnose depression, as a way to get perspective on what I’m feeling, and to know whether it’s approaching the red zone. I also regularly ask that my family members be aware of depression signs, and to reflect back to me what they see, in case I’m viewing things inaccurately. Finally, of course, my therapist who sees me weekly talks with me about anything he notices. We stay on the lookout, but we don’t dwell on it.

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Originally published: January 26, 2018
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