LymeNet Flash: Why there is so much stigma surrounding a disease you get from a tick bite?

This is topic Why there is so much stigma surrounding a disease you get from a tick bite? in forum General Support at LymeNet Flash.

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Posted by Janice70 (Member # 16319) on :

We know it can be an STD, but the general public doesn't know that. So why are people so

defensive when you mention Lyme as a possbility for their symptoms?

Posted by adamm (Member # 11910) on :

Brainwashing

Posted by Ocean (Member # 3496) on :

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'.

Take care,
Ocean

Posted by Lymetoo (Member # 743) on :

Sheer ignorance.

Posted by Tincup (Member # 5829) on :

"Sheer ignorance."

Good Tutu.... and I'll add to that.

The way people look at it is directly related to the IDSA.

They promote a "bulls-eye rash".... a "flu-like" illness... and a possible "swollen knee".

THAT'S IT!!! THAT is Lyme disease. And it isn't in YOUR area... no matter where you live... and it is "rare".

They've promoted the idea Lyme disease is "hard to get and easy to cure" for years.

Or that it is a "fad" disease... something to chat about at cocktail parties.

Their day is coming.

PIGS.

[Big Grin]

Posted by Dekrator48 (Member # 18239) on :

Eventually I believe it all boils down to money.

Posted by jt345 (Member # 19638) on :

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).

Just some thoughts

appleseed

Posted by Lymetoo (Member # 743) on :

Yeah, fear too.

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.

Posted by Leelee (Member # 19112) on :

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.

Posted by Geneal (Member # 10375) on :

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. [bonk]

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

Posted by Keebler (Member # 12673) on :

-

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.

-

Posted by bejoy (Member # 11129) on :

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.

Posted by lymeloco (Member # 7192) on :

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!!!!!!!!!

Posted by lymeloco (Member # 7192) on :

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!!!!!!!!

Posted by bettyg (Member # 6147) on :

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?

Posted by mazou (Member # 15319) on :

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.