Karma Strikes Back

Patients have often said that the only way to convince some people of the reality of CFS is for them or a loved one to get it so that they can see first-hand what it’s like. Even without the disparaging remarks and accusations of lying, it’s not a disease you’d wish on your worst enemy, because it’s so painful and debilitating.

Here’s an apology I received recently from someone who for several years gave me untold grief over my attempts to educate people to the truth about CFS. I’ve edited out some identifying information; with all she’s going through at the moment, she doesn’t need for people to be contacting her and harassing her, but the original was forwarded to JoAnn and Nathalie, and they can verify that I haven’t changed any words, or the meaning of the note, simply removed a few sentences, and that they received it with the headers attached to verify that it did, in fact, come from the woman in question.

Karma came back and bit her in the butt.

Dear Karen,

It has finally happened to me....I had a major flare. This flare was so bad that all this weekend I barely had the energy to get off the couch and go to the bathroom. I didn't shower for two days, cook, or do anything but sleep and sleep and sleep for days.

I remember giving you so much shit when you made the same claim and now it has happened to me and the very first person I thought about was you. If this is how you are much of the time, oh my good God!

As a fellow human being I felt obligated to at least make a humble attempt of an apology to you. It will probably mean nothing to you coming from me, but still I felt it was the right thing to do. ...

So, in the attempt at making this apology. I hope you will at least feel validated, if nothing else. ...

If you do or don't accept my apology, I have no expectations at all. I am not trying to disrupt you or your life. I couldn't go through what I just went through for the last several days without making a definitive note of the harsh and ugly way I treated you when you reported the very same thing.

Name Withheld

Another person in the same group argued that CFS could not be as bad as I said, because she knew someone with a CFS diagnosis who was able to work full-time ... oblivious to the fact that I also worked full-time for 12 years after diagnosis until I finally got so sick that I couldn’t continue. (I have always found it amusing that people who don’t work, who haven’t worked in years, accuse me of being too lazy to work when I’m still working despite the difficulties.)

As Brian pointed out, some people with polio can work, some can’t. I know several people who had polio as children: one is in a wheelchair with no use of her legs, one walks with braces and a clearly abnormal gait, and one walks without so much as a noticeable limp and had a physically-demanding job for many years. It’s the same with CFS: some people have a relatively mild case, some are moderate, and some are bedridden, and as time goes on, mild cases can get worse.

In 1987, I was able to work full-time and clean a small apartment, but could not keep up my home business or my social life, most non-work hours had to be spent resting in order to make it through the next day at work. By 2000, I was no longer able to work full-time, even after jettisoning the cooking/cleaning/laundry. A few months later, I wasn’t even able to sit up without feeling like I was going to pass out due to the effects on my Central Nervous System. I got steadily worse because I wasn’t getting appropriate medication; when I finally got the right pills, I slowly started to improve.

And let’s not overlook the fact that just because someone has a CFS diagnosis does not mean that they really have CFS. Some people are wrongly diagnosed with CFS by doctors who don’t realize that it requires more symptoms than mere "chronic fatigue" (things like swollen glands, fever, exercise intolerance, etc.). Without the 24+ hours of post-exertional malaise that’s a hallmark of CFS, they can’t be used as examples of what True CFS patients could do if they tried harder, because they don’t have CFS.

It’s good that I have received one apology, but there are still many people who owe me one for their false accusations.

The one thing to remember when you’re making disparaging remarks about CFS is that there’s no vaccine to prevent it. Some day you, too, might wake up with the flu that never goes away, and learn the hard way that CFS – also known as Myalgic Encephalomyelitis – is neither fun nor funny.