What I Wish You Understood About Chronic Fatigue

I don't write about it often, but I've battled chronic fatigue syndrome since the time I was 11 years old. I got Epstein Barre virus, and basically it never went away. It simply morphed into CFS, which is one of those odd things that illnesses can do. Morphed probably isn't the technical term, but I don't think they really know what caused it, so it's as technical as I can get.

CFS, also referred to as Myalgic Encephalomyelitis (ME), is an often misunderstood illness. We often hear statements like, "Well everyone gets tired" or "You just need to get more sleep". Sometimes it's "Tell me about it, I've been so busy" or my "favorite" (i.e. the one that makes me want to smack you/vomit) "Welcome to my life," followed by a litany of how they're so busy with work and PTA meetings and little league baseball and their side business selling jewelry or leggings or whatever.  Decidedly NOT listed in that list is chronic illness.  I want to make some super snarky comment about how PTA meetings must really feel like hell (in fairness, they probably would to me), but I keep it to myself, on the off chance they're not telling me about a chronic illness they do in fact have. But still, there are clearly a lot of misconceptions about ME/CFS, and I'd like to explain what it actually feels like, at least to me.

• I'm not just tired or sleepy. I'm not even just physically exhausted. There are times when I feel like someone has drained the blood from my body, making it impossible to function. I'm physically, mentally, emotionally exhausted to the point that just doing something, but thinking about doing something, is too much to bear. 

• There are physical symptoms (in addition to the exhaustion). I get mysterious numbness in my hands and fingers, I get swollen lymph nodes under my arms, and at times it can hurt to put my arms down by my sides.

• My limbs feel weak and unimaginably heavy. 

• Sleep often doesn't help. Sure, it helps compared to not getting sleep, but that would be the same for anyone - all humans need some sleep. But it seems at times like I can never get enough sleep. And yet I'm not sleepy - not as in yawning, maybe I'll take a quick nap sleepy. I'm completely drained. There weeks I nap every day after work and go to bed by 9PM and still, it seems like it's not enough. 

• There are headaches and joint pain that almost become "just part of how you feel". I honestly, and I'm being 100 percent serious here, cannot remember the last time I didn't have a headache, or that my body didn't hurt.  

• It's not always when I'm busy or running around. I can be relaxing at home and feel barely able to move. 

To be clear, I'm not saying that those with hectic schedules and three kids and two jobs aren't legitimately tired - or even exhausted. I'm sure they are, in fact. I'm asking them simply not to dismiss the way I feel because "they know what it's like" or "everyone gets tired."  They do not know what it's like, unless they battle illness exhaustion, because it it's a different type of exhaustion all together. And perhaps everyone gets tired (in fact I'm sure they do) - but that minimizes an illness that can at times be debilitating.  I wouldn't minimize your asthma because I'm winded after I go for a run. You're lack of breath is an illness. Mine is being out of shape, at least when it comes to running. This is the same thing, and I'm asking people to be a bit more aware and understanding.

Why am I writing about this now? Because May 12th is International Awareness Day for Chronic Immunological and Neurological Diseases, including Me/CFS, Fibromyalgia, Golf War Syndrome, and Multiple Chemical Sensitivity (I don't know about the other illnesses to write on them, so will let others do so). It's incredibly important that we bring awareness to these illnesses, which are so frequently brushed off when "we don't look sick".