When People Ask What Chronic Fatigue Syndrome Really Feels Like

I don’t get many questions about my illness — it’s a pretty boring subject, after all— but one I’ve had one a few times is this… What does it feel like?

I get the sense people have asked this out of genuine concern and curiosity, but in the moment, I’ve probably offered a short and not particularly informative answer. It’s not that I don’t appreciate the concern; it’s more that the answer is lengthier than the social rules of conversation permit. At any rate, today I will do my best to answer it, and I will venture to do that without confusing metaphors or in the spirit of a pity party. So, keeping in mind that my experience is just one of many… chronic fatigue syndrome — what does it feel like?

Well…

It feels tired. I know this is a bit vague because everyone feels tired sometimes, even a lot of the time, but, trust me, it is different. If you have ever been pregnant and yearning to end your day at 1 p.m. — it’s kind of like that. Or maybe if you’ve flown to the other side of the world and spent a day or two feeling incapacitated by jet lag — yea, that feeling. Or maybe you’re familiar with that sickly tired you get at about 3:30 on a night shift — similar to that, just all day, even at 8 a.m. after a 10-hour sleep. It’s the kind of tired that isn’t a side show but the main act in your day. Add to that…

It feels heavy. To me, the heaviness is most pronounced when I am grocery shopping, so I’ll use that as an example. Imagine pushing a loaded refrigerator around instead of a shopping cart — that’s what it feels like. Or maybe wearing a lead suit while you climb the stairs or chase your toddler around. Not always, but sometimes it so heavy that I can’t lift my limbs off the bed.

It cycles like binge-drinking. (That’s a simile, not a metaphor!) One of the most universal components of CFS is a something called post-exertional malaise which basically means symptoms of fatigue and malaise surface 24 to 48 hours after some kind of exertion. This aspect also likely confuses people because it is not uncommon to see a person with CFS out and about, seemingly living an ordinary life. The best way I can think to explain it is this… When you see someone with this illness engaging in normal to strenuous activity, essentially what you are seeing is an episode of binge-drinking — you feel good… until hangover time tomorrow. So, say, from time to time, you find me out gardening or staying out late with my girlfriends. Well, post-exertional malaise will ensure I feel all kinds of sh*t for doing that tomorrow. That’s just how it works.

Someone of CFS can have periods of sobriety (or remission) where symptoms fade and he/she may be able to increase their level of activity for a while. I had a lengthy (over six months!) remission recently — an awesome time; I relished every waking second of that feeling of wellness. Unfortunately, like alcoholism, it is a disease that lingers and a “fall off the wagon” can be triggered by the smallest of things, as was the case for me when I got simple case of strep throat. Speaking of which…

It feels like sick. The science behind CFS isn’t entirely complete, but it is known to leave us immuno-compromised. I find when a run-of-the-mill virus runs hits our household, I am the first to get it, the last to shake it, and the most miserable in between.

It feels like I’ve been robbed — mostly of time and quality. Managing this illness, for me, means consistently early bedtimes and rest periods during the day. If I were to quantify it, I would say it feels like I operate with two less hours a day than everyone else, and the hours I do have are not always that great. For me, this has meant the loss of “extras” like hobbies, evenings in with my husband, and time with friends.

It feels a bit like I have become my 90-year-old neighbor. Whenever I enter a conversation with the woman next door, she inevitably tells me about how her health has deteriorated such that she can’t grocery shop or vacuum or keep her flower beds or walk to the end of the block, etc. And then she’ll get into how she really should get a cleaner or downsize and how she just can’t manage anymore… All the while, I’m thinking, “Yes, don’t I know it!’

I hope this answers the question for anyone who’s ever wondered. I realize my illness is not the most exciting of topics, but, I do appreciate the concern and the opportunity to vent a little sometimes. Thanks for listening!

Image via Thinkstock.