Remember this guy? While this situation happened several years ago, the thoughts of this narrow minded, hateful man are sadly, shared by many. Fibromyalgia is the last medical disorder I know of in which the patient spends time and energy ‘proving’ he or she is sick. It is cruel and it is wrong. We have enough crap to deal with, without people labeling us as fakers or worse, as having a condition that does not even exist! We are modern day lepers.
As many know, I love to make videos. I make them about Fibro and other things as well. I made a video I am very proud of for Fibromyalgia Awareness Day 2014. I was greeted by one of ‘these people’
in the form of a comment. See below:
First, it is sad that pond scum like this even exists. Fibromyalgia is a medical condition and every Doctor out there has it in their medical book. Every Doctor now knows it is very real. Every medical school is teaching about it. There are even those scientist who are passionate about it and wanting to ‘take it on’ and figure this mysterious ailment out. Is it ‘invisible’? Sure! Unless you spend any amount of time with the Fibromite. You will learn quickly the winces that the chronic pain brings and the puffy eyes that only insomnia marked by chronic fatigue can give. So lets look at another invisible condition that many have had more experience with: Migraine headaches. You cannot see a migraine headache. You cannot do a blood test or run a scan for it. However anyone that has had even one migraine can attest, it is the most brutal of all experiences. I have never seen anyone question the existence of a migraine. As a sufferer myself, I can attest, there is nothing worse. Yet no one has ever has said I am faking, attention seeking or worse, my migraine is not real. Why should Fibro be any different? It should not… not back then, not now and certainly not in the future! And to answer this abusive troll on who I would be ‘without my fibro’? : I would be a nurse, taking care of people and still trying to write and get published, I would be going a million miles an hour doing it! Now I am lucky if I get two or three things done a day.
We Fibromites have the people like good ole “VeniceStu”. They want to label us as fakers. Of course “Venicestu” has a fake name and a cute ‘baby in a bath’ for his avatar thinking it will hide what he really is: an abusive troll. On top of that I have fought another smaller battle to stand my Fibro ground: everyone insisting by God, I must have Lyme Disease. Ding, Ding!!!!!! Again, “Fibro cannot be real, it must be masking something else”. I have a lot of friends who have Lyme and I would never dream of going on to their Facebook wall and telling them that Lyme is really Fibro masked over as Lyme Disease. And furthermore, the tests they are taking are not accurate. I even have a Facebook Friend who was trying to advertise recently! What!? He said this particular brand of Lyme testing was the only one that is accurate anywhere in the USA!
I do not know how many times or ways I can say this: I know my body. I… do….not… have… Lyme. And I sure as he** do not appreciate my Facebook page being used as an advertisement page for a Lyme disease test. I have been in this game probably since this guy was in grade school. Do not be condescending to me. I know my stuff when it comes to Fibro if for no other reason: experience. If I say I do not have Lyme, do not pick a fight with me. I understand the passion. But I fail to believe that there is only ONE accurate diagnostic lab in the entire USA. And no, Fibromyalgia is not Lyme ‘disguised as Fibro’. Could it be in some cases? Sure! Is it all the time or even most of the time? No!
Possibly the worst offenders of the stigma of Fibro are family and friends that flat out ignore our illness. They are willing and ready to raise awareness for everything under the sun from autism to cancer; from breastfeeding to the debate on immunizations. However, bring up an illness that affects 200-400 million people worldwide and completely destroys lives, and all of a sudden you are a ‘faking complainer’. I have never disrespected anyone’s cause. I have even shared said and other causes. However, I never or rarely see those closest to me try to raise awareness about Fibro (only I ask or put it on the timeline myself). It is sad and shows….. we are the lepers of today as stated earlier.
We with Fibromyalgia, do not want pity. We do, however, desperately need AWARENESS! From those that think we are ‘lazy fakers’ to those that think we are useless and should be shot; from those that think we really have ‘their’ disease and that Fibro is simply in disguise to within the Fibro community and those who believe in no meds at all and try to make people who take meds feel weak, there is stigma everywhere. Add those who ignore our illness while raising awareness for everyone else and we feel like the lepers of today. It needs to change if we are ever going to find better treatments that are stepping stones to a cure. It appears You Tube finally removed Venicestu’s (it looks to be gone!!! Yay!) comment, but if you wish to check it out to see if you can see it (and report it) the link is:
Until next time, K.