I dream of the day when people will say, “Oh!”

Forty blogs.  Forty unique individuals.  Forty stories.  Forty lives severely impacted by CFIDS or FMS.

Tonight, I read the stories of 40 CFIDS/FMS suffers from Australia to Ireland to Canada to America and everywhere in between.  The struggles and the stories varied depending on the degree of severity and disability.  But there was one thing theme that seemed to reverberate throughout the blogosphere.

Chronic Fatigue Syndrome is a dumb name for this illness. There is just no polite way to put it.  I mean think about it.  If you were to tell someone you were tired or fatigued, what would be their response?  They would tell you that they understand because they too, are tired or fatigued.  They would be right.  They are tired.  That is not what I (and millions of others) struggle with every day.

According to the dictionary, Fatigue is defined as,

Physical or mental weariness resulting from exertion.

Something, such as tiring effort or activity, that causes weariness: the fatigue of a long hike.

Tired is defined as,

exhausted, as by exertion; fatigued or sleepy

weary or bored

I don’t know about you, but I don’t have to do anything physical to make my energy levels dissipate.  I rarely exert myself to any degree because I know what the result of that will be.  And weary or bored?  No wonder there are still many doctors that think this is all in our heads or that this illness isn’t that serious.

In addition, those definitions insinuate that the fatigue or tiredness can be alleviated by sleep.  I can tell you that is not so.  For instance, I slept 12 hours last night.  Guess what?  I’m still exhausted.  It is amazing to me after all these years and after several attempts to change the name of this illness  to something more appropriate and serious, we are still calling it Chronic Fatigue Syndrome.  Why not call this illness Cognitive Dysfunction Syndrome.  That’s about as clear as mud too!

Dr. Paul Cheney has often stated in his conferences that he doesn’t understand how we are able to function at all.  He has no idea how we are standing up right.  In his opinion, we are as ill, if not more ill, than those with similar, serious illnesses like AIDS, LUPUS, MS, and even Cancer.  Yet, we are repeatedly slighted by the medical community because our illness has been labeled  as a ‘Chronic Fatigue.”

I recall back in the 90′s, many CFIDS sufferers tried to get the name changed because we felt the name was demeaning to those of us who suffered its fury.   At that time, two names that were put up as possibilities:  1) Nightingale Disease, or, 2) Cheney Syndrome (or maybe it was Cheney Disease).  Both names were fine with me because the word fatigue was no where in the name.  I leaned towards naming the illness, Cheney Disease/Syndrome, after the Doctor who discovered it and has spent his life researching and treating us for the past 30+ years.

Unfortunately, our desire to see a name attached to this illness that did not demean or disparage our struggle did not come to pass.  Today, we still suffer under the blazing banner of Chronic Fatigue.  As if we don’t have enough on our plate to deal with every day, we still have to fight the implication that is continually put out there, that we are ‘just tired.’

The first several years of my illness, I dreaded telling people what I had because I knew what the response would be.  Fatigue?  Oh, I have that, too.  Uh huh, I thought.  Eventually, I decided that I would reject that Chronic Fatigue Syndrome title and I would refer to this illness as CFIDS which is the acronym for Chronic Fatigue and Immune Dysfunction/Deficiency Syndrome.  At least with CFIDS, I didn’t have to watch people’s eyes glaze over as I helplessly try to explain that I am not  just tired.

While CFIDS is a better name, I think we can do even better than that and have our illness named in a way that it is taken seriously.  I would love to have the new name to be such that people would know immediately how challenging this illness is.  When someone tells me they have LUPUS, I respond, oh!  I get it.  I understand.  If they tell me they have MS, I go oh!  I get it.  I understand that their illness is a very challenging one as well as very debilitating.  I also immediately understand, that over time, it can get much worse.

Why is it that those of us who suffer the debilitating and devastating affects of this illness, can’t be afforded the same respect and acknowledgment?  I dream of the day that I can say I have ‘such and such’ illness and people say, Oh!  They get it.  They understand the terrible nuances that go along with that name.  I dream of the day that doctors take it serious because the name says its serious.  I dream of the day that the FDA, the CDC and the NHA change the name and give us the respect and deference we deserve as those who fight  every day, with every breath we have to survive, to overcome and, to beat back this illness.

I dream of the day, I can say, I have ‘such and such” and people will say, “Oh!”

Determined to continue forward,