The Stigma Of Fibromyalgia: When Others Call you Fake!

stigma_Fibro2Remember 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:

 

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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.

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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!

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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. lepers

 

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:

https://www.youtube.com/watch?v=5109ysHdqQY

Until next time, K.

 

10 thoughts on “The Stigma Of Fibromyalgia: When Others Call you Fake!

  1. Wow!!! When I read this I literally FELT it. I have all those type of people in my life. The ones who say they understand and roll their eyes to those who want to compare what they have and how much worse they are feeling than me to those that say if you just get out if your house and do things you’d feel so much better!!! I usually just lie and say I’m ok rather than being honest. Why should I? They don’t understand. And sometimes I wonder if they even care.

    • Jo, I am so sorry you have to go through that. It is why I do not feel “Modern Day Lepers” is going over the top. From “fake” to over medicated, we have all heard it all. The truth is I am less medicated than I have been in 20 years. I am lucky to have a great pain man. Dr that utilizes nerve blocks and we have found my ‘sweet spot’ for the most part with my meds…. for fibro. My neck… that is another story. Still, when the big, bad flare hits, *nothing* touches it. I usually flare at least 2 days a week. I would probably feel better if I was trampled during the running of the bulls. But then, you know this. Blessings, my sister in this fight. All we can do is press on, keep spreading the word until people ‘get it’ or karma sets them straight. Either way one or the other will happen. <3 xx

  2. Written really well and echos the thoughts of so many of us. I can’t believe you had that troll say that to you well, yes I can actually, but you know what I mean lol! Bit confused as to why hell was asterixed out though as it is not a swear word but I’m sure it was a brain fog moment, I have plenty of them lol! Thx for expressing so well what o many of us feel 🙂

    • Hi Tasha! I guess I asterisked out hell as some people get offended at the least little thing. Thank you for reading the blog and I’m glad that the article related to you. Sadly, it relates to so many of us… probably nearly all of us fibromites. Blessings to you and hoping for days full of laughs and as free of pain as possible. 🙂 XX

  3. Thank you so so much for writing this. I teared up reading it because it hits home…so very many people have told me I’m a faker, or suck it up you’re young. They don’t get it. It’s so lonely at times when even family refuses to acknowledge that I have an incurable chronic pain condition. Even doctors have this mind set. Just because I’m young doesn’t mean I’m not in major pain! And yes I slept for 8 hours but it feels like 3 thanks to this disease. Thank you for all you do to raise awareness. Truly it is appreciated.

    • Hi Felicia. I was dx at a young age too. My trigger event was at age 29 and I was never the same; official dx, age 32. I have spent 40% of my life with this illness and do not remember what normal feels like. I am ‘glad’ you were able to remember, you are not nor will you ever be alone, but also sorry that you have to go through this. Remember too about Doctor’s…. good one’s are out there, it may take a while…. but keep looking until you find your medical ‘dream team’. Blessings and thank you for reading!

  4. Every time we post anything we run the risk of some negative jerk on the internet starting some crap. I’ve been there, and all we can do is report them and do our best to ignore them. I posted a while back my thoughts on those that “heal” from Fibromyalgia. Simply that there are many things that likely get mislabeled as Fibromyalgia (including food intolerances/allergies) and many people are lucky enough to have one of those things that can be treated easily with diet change or with some other treatment that completely reverses their symptoms. Those people didn’t have Fibromyalgia.

    I made some major diet changes and they did help my symptoms but they have not gone away. I’ve tried almost everything to make my symptoms GO AWAY! It doesn’t happen. Maybe one day we will get lucky and they will find the root and figure out how we can cure it, but it’s not happened yet.

    • Thanks for reading! I will have to give your blog a read… good luck with it. There can never ever be too much awareness. Blessings! 🙂

  5. Hello,
    I popped-out this blog absolutely accidentally, looking for the different kind of information. I’m sorry and confused, I know what is meant here so well. Unfortunately… After more than 15 years of constant and getting worse pains, many doctors, many medicins, pain blocades ect., I’m still struggling and looking for the help. I still have hope, but year ago I was said about the diagnosis. It’s like a sentence to be in pain without being helped… I would say I’m happy that I’m not alone, but I’m not, cause it’s so terrible. Be patient, be searching, have hope… Its all I would like to say…

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