By now, you have read all of the bad stuff about CFIDS. You may even be sick yourself and it is my prayer that you too will become well and return to normal. Amidst all of the depressing facts, opinions, and horrid stories about this illness, I had to bring out some humor for comic relief. As most of us with CFIDS, we can always use a laugh! Making people laugh has always been a trademark of mine. No matter where I went or who I interacted with, I always found something to poke fun at. This helped break the tension and bring people together. Maybe this is one of my callings in life? Anyway, I wrote this essay to give you a break from all of the dreary information that you've probably been engulfed in.
You may be asking, "What could possibly be funny about CFIDS?" The answer to that is absolutely nothing, but people's reaction to it can be. I suffer from it, so believe me when I say that this is definitely a serious illness. I have however found some humor in other people's reaction to both CFIDS and other hidden illnesses in general. Granted, I'm exaggerating in this essay quite a bit, but just have fun with it! I'm sure that you'll want me to explain, so get ready!
Speaking to those who are afflicted with CFIDS and other hidden illnesses. What do I mean by hidden? Well, some things just don't appear to show up on the outside, so they're hidden to everyone but the one who suffers from it. Since your diagnosis, have you ever really noticed people's reaction when you tell them what you have? I mean, did you ever look into their eyes?
If you are fortunate to have "good" days or simply the strength to get out of the house to do needed chores, you are eventually going to run into someone that you know at the grocery store. On the other hand, you may simply strike up a conversation with someone that you don't know. Somehow, the subject will come up that you are sick. The first question that usually arises is "What have you got?" Swallowing your tongue to keep from biting their head off and telling them that it is none of their #$&*# business, you calmly say, "I was diagnosed with Chronic Fatigue and Immune Dysfunction Syndrome." After you get your breath back from spewing out that mile long name, you look at the person, waiting for their reaction.
At first, you suspect that they too have come down with CFIDS, as they immediately exhibit a symptom that us patients call Brain Fog. It takes them a while to process the difficulty of what you just said. If you look real close, you may even hear the gears grinding in their head, and sometimes a slight trickle of drool has been known to appear in the real severe cases. Anyway, they finally answer with a profound...."Oh really?"
You know what comes next. You have to break into your spill about what this illness is, and of course, that they probably can't catch it from you. This statement has to come out early in the conversation, especially if you notice that a life-long friend suddenly doesn't want to shake your hand. Anyway, you've gotten so use to explaining what you have that you sound like a dictionary with diarrhea of the mouth. Even after all of that, they respond with the usual.."Oh really?" Nope, you didn't do any good yet, but keep trying.
Now, here is where it all goes down hill. Don't
get me wrong, not all folks are going to react this way. There will be
plenty of people you know that will understand. Let's see....there's mom,
dad, your brother....then there's mom...
Anyway, the mere title of your illness is difficult enough for them, but unfortunately for you, they normally only hear the first few words...chronic fatigue. Everything else might as well have been four letter words.
Then they say something like, "Chronic fatigue?
Wow, that sounds pretty bad." Let's step inside of this other person's
head for just a minute and hear what they are thinking as opposed to what
they are saying. Watch out...it can get pretty scary in there. This is
another symptom of what I call the uninitiated syndrome or
those that haven't had the first hand pleasure to meet your new life-long
friend called CFIDS. They say one thing, but think another. Inside their
heads, they are thinking, "Geeez, I need to go to the doctor and get
me a note. I'm tired of working too"
You proceed to tell them how you had to quite your job because of your illness. It is a humbling task to even utter such a thing, since you have worked your behind off for so many years, and didn't want to quit now. They now know that you had to go on disability and are at home most of the time. Hear goes another gear turning in their heads. "Great, now one of my own friends is scamming the government for money." Somehow, you've learned to sense that inner thought coming from some of those that speak to. You proceed to tell them how difficult the illness has been and how tough it is to function. Keep in mind that you both are standing in the middle of the isle at the grocery store. Strangers are beginning to eavesdrop on your conversation by now. Maybe not, I mean it's pretty common for someone to stand behind you starring at the condom rack for thirty minutes with his ear turned towards you.
The next thing that goes through this person's mind is, "If you're so sick, why am I talking to you in the grocery store, huh? Got ya, didn't I!" I can understand why someone would feel that way. After all, if you're sick or disabled, you don't need real food do you? The world just has to stop because you are sick. Your yard doesn't need to be mowed, your kitchen doesn't need to be cleaned. For all practical purposes, you should be lying in a hospital bed with tubes poking out of every orifice in the body. Oh my gosh, they've found me out! I shouldn't be here! What will this look like when my private disability company's spies see me? You calmly look over your shoulder for the papa racy, but no one's there.
As you continue to stand there with your little grocery basket in your hand, it begins to wear you out. You keep shifting the basket from hand to hand to even out the agony, because you don't want to set it down on the floor and look like a weakling. You explain how this illness makes you feel and how you are not able to do much strenuous activity anymore. Once again, the other person's brain goes to work...."What a whimp! What this dude needs is get out of the house and quit being lazy." Here again, you begin to sense that your friend is losing their understanding of you illness. It takes the remainder of your strength to keep from crowning them with the little grocery basket that you painfully hold in both hands. But you refrain, remember...they are one of the uninitiated.
The conversation is finally over and you purchase your groceries. You are heading out to the parking lot, when you run into another friend that you haven't seen in a while. They greet you with..."Hey, I see that you're better. You're looking great!" You calmly answer, "I sure am, gotta run." Whew! You got out of that one! You couldn't stand going through that again today. Here's my advice...rather than explain...RUN!
You make it home from the store and collapse on the couch...groceries go flying everywhere, but you don't care. Anyway, who cares if the toilet paper just came unraveled and attacked the cat like a hungry python. After all, you're sick! You don't have to do housework or keep things in order!
On the way in, you just happened to grab the mail out of the box. While lying on the couch, you decide to read the mail. Oh hear it is! A letter from your disability claim. What a relief! You've been without a paycheck for nearly three months and finally you are going to get back on your feet. Well, sort of back on your feet, since the disability check will only cover about 3/4 of your bills. Oh, didn't your friend know that you haven't received a check from anyone yet?
You open the letter and begin to read through blurry eyes. You think that you may need to go back to the eye doctor, because it appears that the letter says that your claim has been denied! The only part that you are able to focus clearly on says something like this:
"After careful consideration, we must deny your claim based on our decision that you are able to perform the following jobs that are readily available within the job market: shrimp peeler, envelope stuffer, condom roller, circus clown, crash test dummy, monkey trainer, street performer, nuclear waste disposal technician, vaccination tester, public speaker for the save the groundhog foundation, drug dealer, cat burglar, toilet paper salesman, hacker, pornographic film maker, organized crime, counterfeiter, or a politician."
You throw the letter down and suddenly have a burst of angry energy. (Feels good doesn't it?) You grab the closet thing to you, which is the unrolled toilet paper roll. You jerk it wildly, spinning your entangled cat around like the fly wheel on a five horsepower motor. "How could they do this to me? Does anyone understand?" You finally get a hold of yourself and fall back into the couch exhausted. Your dizzy cat calmly crawls up on your lap and vomits. What a day this is! No one understands!
You pick up the phone and dial...."Hey mom, it's me."
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