Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Janice,
I think at least in OH, it is thought to be this 'rare' disease that doesn't cause very much trouble. I even think some people think, "EWWWW! How gross are you to have been bit by a tick!?"
I think that when people think it is a relatively benign disease and they are having these awful symptoms, and you say Lyme, they think, "um no, my symptoms are BAD, don't belittle what I am feeling with telling me it's 'only' Lyme"
You know what I mean??
Course we ALL know how life disrupting this disease is, I wish everyone could just spend one day with Lyme. Then they would 'get it'.
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Eventually I believe it all boils down to money.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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jt345
Unregistered
posted
I am starting too think it is fear. When I tell people about how it lives in your cells ,controls Your body temp.
I think it creeps them out. Sometimes I'm like a, star trek experiment gone bad. The idea of having a life form living inside of You gross's people out
And sometimes I think they ,see just how damaging it,is Or they think We are faking.( I wish I was faking this).
Tincup, you are so right about them minimizing the disease and about the symptoms they always state. No mention of what it does to us neurologically.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I learned a lot about the stigma of Lyme by watching Under Our Skin (twice - there's a lot to absorb) and reading "Cure Unknown" and PJ Langhoff's books.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Lack of education/correct information.
All I knew about Lyme prior to researching it,
Was that it was a tick-borne vector.
I also thought it only occurred in the North East of our country.
It wasn't until I began to research Lyme as a possible cause
Of all of my symptoms did I begin to understand the complexity of this disease.
I am still trying to wrap my brain around it.
Still learn something new every day.
I never knew that Lyme could contribute to anything
Other than joint pain prior to my diagnosis.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I don't think the stigma is from the tick, it's from being perceived as being weak.
While the medical institutions are one of the nation's top employers and b-zillions of dollars goes into that, people who are ill simply are not treated with respect in our culture and they are not given support by someone with the expertise required.
The "blame-game" falls on the patient, far too often. Nothing creates a caste system faster than chronic illness. I don't even want to call us patients anymore as the doctor-patient relationship strips away so much dignity from the patient.
And, due to ignorance and the utter unwillingness of doctors to study this, people who have lyme are hit even harder.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Lack of Control.
People need to feel like they have the answer or the cure.
Why admit that much of "weakness, infirmity, and old age" is really related to bacteria that is difficult or impossible to completely eradicate?
If we have no firm answers, then it's much easier to believe it doesn't exist.
Just take some Wellbutrin, get married, get divorced, get a better job, take a vacation...get a grip, and you'll be fine.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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lymeloco
Unregistered
posted
There is stigma because there is things being kept secret. I hope in my life time that it will come out, but right now we just have to sit tight and hope it will.
I am hoping and praying with the new administration that this will unfold, and if not something will eventually give. Don't ask me what or how or why, but it will.
We are a force to be reckoned with!!!!!!!!!
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lymeloco
Unregistered
posted
There's NO ignorance. They all know THE TRUTH but aren't willing to deal with IT! I for one, will not give them an out!
I have been hurt and humiliated and I'm not taking anyone's S--- anymore! Stop giving them excuses...PLEASE. Your talking about top notch specialists saying it's all in your head?
Are you actually falling for this B.S.? That's the problem people, wake up and smell the coffee. YOU ARE PAYING THEM!! AND FOR WHAT??? SEEK THE TRUTH AND IT WILL SEEK YOU! I'D RATHER DIE THAN GIVE THESE AS-----S THE SATISFACTION!!!!!!!!
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bettyg
Unregistered
posted
geneal, you knew more than me when i was diagnosed with lyme disease; knew it was tick related. boy, has my world be enlightened with education, calling congress, the lyme war... ilads vs. idsa, etc. and all this other HOG WASH.
it's also the fear of the unknown; will i get it?
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posted
Denial, I think. Recovery is such a tough road, and people can see what we go through. Maybe it is just easier to believe that it could not happen to them.
Posts: 636 | From Saratoga County, NY | Registered: Apr 2008
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