May 122014


…I hope you are not saying that CFS patients are not as ill as HIV patients. My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.

I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV.  — Immunologist Nancy Klimas to the New York Times (emphasis added)

Imagine yourself with the Flu. You’re a day past the “sleep 20 hours in a fog” stage, but you’re still pretty sick. You can get up for a few hours at a time, make yourself a sandwich or take a shower, maybe drive to the coffee shop for a latte. But you never really forget that you’re sick — with everything you do, your head throbs, your body aches, your brain feels fuzzy, and you can feel your bed calling you back to horizontal. One minute you’re too warm, the next you’re too cold. Noises seem too loud, smells too strong, light too bright. You might read, watch some TV, take care of your child or talk to your spouse, but all the while your body and your brain put out a distracting thrum of competing messages: “I’m siiiiiick. I don’t feeeeeel wellllll. Go lie dowwwwwwn.” After a few hours, it’s time to give in and take another nap. Exhausted as you are, sometimes you feel too rotten to sleep.

Most of us have been there. If possible, we just drop out for a day or two and rest till it’s over. But now take those few days of Flu and stretch them out over 9 years. What balls would you drop? What would happen to your job, your family and friends, your hobbies — your life?

To quantify it, imagine that research found most people with Flu lost between 50% and 85% of their normal functioning. Imagine the 10 things most central to your life — say Job, Family, Friends, Faith, Hobbies, Cooking Meals, Cleaning House, Self-Care, Fitness, and Travel. Picture writing each one on a notecard, then putting those cards face down, shuffling them, and taking 5 or 8 of them away. What’s left? What would the your life look like without the things you took so firmly for granted? What if you rarely left the house? What would those changes do to your self-image and self-esteem?

Now imagine that there wasn’t much your doctors could do. In fact, what if many doctors didn’t “believe” in the Flu, or thought that, deep down, Flu was just a bodily expression of some psychological damage. What if most of the other people in your life felt the same? What if they told you things like “I would understand if it was Lupus or something, but come on, the Flu? You really need to snap out of this Flu thing.” What if, despite a million severely affected Flu sufferers in this country, the disease received fewer research funds each year than Male Pattern Baldness? Imagine so many public misperceptions about Flu that even government health authorities repeated discredited data on their websites. Imagine the lack of a Flu test meant it was almost impossible to get disability payments for Flu — even for the 25% or more of Flu sufferers who were too sick to ever leave their house.

Imagine that one of the top 3 causes of death for Flu was suicide. Imagine that every other patient in the Flu community understood the hopelessness that could lead someone to that dark point.

The Flu analogy is the best way I can think of to describe my past 9 years with Chronic Fatigue. I know it’s impossible to convey the reality of chronic disabling illness to someone who’s never been there, but today is International Chronic Fatigue Syndrome Awareness Day and I wanted to give it a try. Some people with CFS are well enough to work and others spend years at a time confined to their beds, but for me, the best comparison these days is that “a few hours at a time between rests” stage of Flu. My biggest issue is fatigue and the way my brain never seems to work the way it should. There’s pain, but I would gladly take on even more pain if it meant getting my mind back. I struggle with the most basic activities of daily life — the other day I crashed and had to rest because a bath was too exhausting – but I’m lucky to have heroic levels of support from my husband and my mother. I also have finally found a primary care doctor and a specialist who believe in me and are willing to keep trying treatments for as long as it takes. Even when the chances of actually getting better seem low, it’s huge at least to have doctors on your side. Not everyone with CFS has that luxury. Still, it’s hard to keep hope alive when everything goes downhill year after year. I feel useless sitting around the house all day. I try to practice mindfulness and live in the present moment, but on bad days I struggle with feelings that a life spent sitting around is a wasted life. I parent as best I can, try to maintain relationships, clean far too rarely, and read and write when I can. But mostly I watch the years tick by unused.

In coming weeks, I’ll follow up with a few of the medical and social basics of Chronic Fatigue Syndrome. Please read on, for your friends and extended family and coworkers and neighbors who are out there on their couches and in their beds, suffering in silence. Chronic Fatigue Syndrome is more than just the “yuppie flu.” It’s not in our heads. And it’s slowly killing a million people while society looks the other way.

  2 Responses to “Life With Chronic Fatigue Syndrome”

  1. Great analogy, Tara! I found you through the blog bomb, and shared this on my blog’s fb page.

    • Thanks for stopping by, Jocelyn! Your comment means the world. Even if not one thing changed about our illness levels, wouldn’t it be so much easier if we could just help healthy people understand? This was my best shot. (In other news, I realize I promised a follow-up post “tomorrow” and then never followed up. After years of failing to keep up this blog on any kind of schedule, you’d think I’d learn some lessons by now! Maybe one of these days….)

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