Something odd happens when you tell people you have chronic fatigue syndrome.
People’s reactions are not often quite what you’d normally expect following the disclosure of a very serious and debilitating illness. Typically, there are a few standard responses. At least, here are some of the more common replies I've had in the 13 years I've been ill:
Laughter. Yes, sometimes people actually laugh. They then usually make a variation of the same joke, something along the lines of "Oh, I think I have that, too!!" Or, "Yes, and don't we all!!" I also once even had someone say to me, "Man, they make up syndrome names for every little thing now, don't they?!"
Other times people are able to restrain their amusement to some degree, and simply smile. They smile because they think you basically just told them that you're a hypochondriac who can't really cope well with life.
And then there are times, of course, when you meet someone who actually is informed about CFS, knows someone who has it, or who is just generally compassionate, and they thus respond to you with sympathy and kindness. But this happens far less frequently than it really should.
I find that, most often, when you tell people you have CFS, you get unsolicited advice. This used to surprise me: the idea that someone who had no real conceptual idea of CFS or the pathogenesis involved could be so certain they had all the answers for me. I often would wonder if I instead had MS, cancer or late stage AIDS (illnesses that the CDC equates CFS to in terms of symptom severity and disability), would they be so quick to offer a fast and easy remedy?
Now, don’t get me wrong. Most of these suggestions, especially when coming from caring friends or relatives, are all very well intentioned, and sometimes they can actually be of value. For the most part, I find people quite genuinely want to help. And, of course, suggestions from fellow PWC’s and others aware of CFS are ALWAYS welcomed. One unquestionably wants to hear what others in a similar situation did with any measure of success. I’m referring here primarily to the passing suggestions of strangers & acquaintances who don’t otherwise know me, or have any idea what chronic fatigue syndrome is even about. And don’t get me started on doctors. ;)
For the sake of amusement, here are some of the more memorable "Have you tried....?" type of suggestions I've received at one point or another in the many years I’ve been ill.
"Have you tried drinking extra coffee in the morning? I couldn’t get through the day without a lot of coffee either".
"Have you tried drinking Jolt or Mountain Dew? How about No Doz? That stuff will totally rev you up."
"You may be depressed and not even realize it. Have you tried seeing a therapist?"
"Have you considered just taking naps?"
"Have you tried smoking marijuana? It’s very calming."
"Have you tried drinking Sleepytime tea at night? It always knocks me out and I wake up feeling great!"
"You look fine to me. You just need to get motivated!"
"You probably just need some iron. Have you tried taking iron?"
"I’d be tired too if I sat around doing nothing all day. Have you tried taking up a hobby?"
"Are you getting enough sex?"
"Why don’t you just ignore it? I get tired, too, but I don’t let it interfere with my life."
"Have you tried splashing water on your face throughout the day?"
"You just need to exercise! Exercise is great for energy. Have you tried step aerobics? I feel great after step aerobics."
When magnetic therapy didn’t work for me: "Wow, I'm shocked it didn't help you. Magnetic therapy always helps with fatigue. Have you tried seeing a doctor? You might actually be sick or something."
"You are lovable and worthy of being well. You know that, right? You won’t get well until you can love yourself."
"You create your own reality with your thoughts. As within, so without. If you are sick, it’s only because you’re thinking all the wrong thoughts."
"Have you tried eating sugar for an energy rush?"
"Have you tried eating less sugar to avoid energy rushes?"
"What benefits do you think you get from being sick that might be keeping you ill?"
And among my favorites: "Do you pray? God will heal you if you just pray." (Yes, I pray). "Well, you are clearly not praying hard enough, Sweetie."
Again, I know these suggestions are all well intentioned, of course. With a name like chronic fatigue syndrome, it's easy for people to assume you are just sleepy all the time, as that’s what the ridiculous name implies. And such a problem can surely be easily remedied. After all, it's true: who HASN’T been chronically tired at some point in their life?
But CFS is not about being tired. It's about being sick. It's about immune system dysfunction, mitochondrial damage, and disturbances in the endocrine, cardiovascular and autonomic nervous systems. It's about viral activations/reactivations, gut dysbiosis, orthostatic intolerance, problems with oxidative phosphorylation, blocks in methylation cycles, changes in genetic expressions, glutathione depletion, oxygen toxicity/cellular hypoxia, diastolic cardiomyopathies, and delayed low V02 max (maximal oxygen utilization) following exercise or exertion.
So, as much as I appreciated the above suggestions, I'm afraid a cup of coffee and a few splashes of water on my face isn't quite going to do the trick. But I hope people keep those ideas coming, as I'm willing to try anything. ;)