Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Please don't call me "Lymie" -
I am a person with lyme, someone managing lyme, or someone faced with lyme,
I am dealing with lyme.
And, yes, I suppose I am even a person who has chronic lyme (and much more which would be included in "Lyme Complex" as some LLMDs now say).
It really should be called borreliosis or neuroborreliosis, though, to be accurate. It never should have been called "Lyme disease" to begin with as it is just the name of the town where it was first "noticed" but that's another matter, really, aside from this since the nickname for the infection is likely to stick for a while. But the nick names for those with it, I find insulting. And we can stand up to put-down that so often goes with it.
But - I am not a "Lymie" and it makes me so very sad to be called that or see it as the nickname that automatically comes with the infection. "Ick," is how I feel about it all.
I do not say: lyme PATIENT as others have pointed out before that this makes them sad as they are so much more than a patient. So I stopped using that term as a reference.
Personally, I do not want to be called a lyme "Sufferer" or even "Victim" either but those terms may be used sparingly and appropriately in certain context. But, depending upon the audience, these terms can also backfire.
Back to why I'm so saddened to be called "Lymie"
Since I've noticed more posters using the term "Lymies" lately, I just had to speak up.
I know I cannot say the words as eloquently as I'd like and tend to repeat in different ways ill-worded attempts about this matter that is so very close to my heart, literally.
But if we want the world to take this illness and those who have been dealt this hand seriously, nicknames ending in "ie" can have the opposite effect.
Would we call those with cancer "Cancies" or those with Parkinson's "Parkies" - etc.? Of course not.
I do not want to kick off a fight but, please just consider that it can seriously undermine the serious nature of lyme and those who deal with it.
I don't "do" Facebook (just too overwhelming) but have noticed references lately to more and more Facebook pages with a headline of "Lymie" and it makes me very sad to think this is for the world to see us, as club with a cute name.
I think it undermines the integrity of a person with lyme in the eyes of others who do not understand.
I literally recoil when I see that term as a nickname for myself. I want nothing to do with any nickname for this dreadful situation.
Others see it as a term of endearment and I know. Others see it as bringing together others, lovingly. And it may well do that - INSIDE a sealed room. But not for the world to see. They think we WANT to be in this cute little club.
I'm not wanting to clobber anyone over the use of that term but thought maybe those who use it don't know that it can carry great sadness and embarrassment for many - and greatly jeopardize the way others in the world see us.
Anytime anything is posted anywhere on the web, it's public. All eyes can see it. I just hope they see people who are retaining their dignity against tremendous odds. -
[ 11-21-2014, 05:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
completely agree
Posts: 169 | From The Poconos | Registered: Jun 2011
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Tricky Tickey
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posted
I'm wondering what label name would be appropriate when addressing members of our subculture (which is what we are). What would you like to be called? I've often thought of the term 'Lymie' as a bit lame.
Those who have been through cancer are called 'cancer survivor'.
So perhaps the best term to describe us, meaning those who have had Lyme & tick borne diseases and overcome it or are still fighting it, would be:
Lyme advocate.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- Lyme Advocate certainly works for many who speak the truth about this (and most who post here). I see that more for those leading events or speaking out, though.
I've never liked labels but will say "advocate" is a good term that usually holds dignity.
But to say every person with lyme is an advocate puts them directly in the center of political fight.
Maybe they want to avoid that part (as best they can) and just get better without having to become a political figure in the fight. They are not intending to fight - they just want treatment to get better. They may feel "advocate" to be a job forced on them.
I'm not calling for agreement on a particular term at all. There are many different ways to refer to those who have lyme, while keeping dignity.
I've not yet survived lyme, at all. I am not a survivor. I am still ill.
In my mind, a survivor would not feel as ill as I do every minute of every day. That's not yet a survivor.
I am just a person who has this and am fighting to learn more to save my life (since an expert doctor and treatment is out of reach, as it the case for thousands). I've come far and am better in some ways, so, yes . . . I've survived a lot.
Of course, technically, being a survivor can refer to anyone still standing during an on-going struggle (another word I shy away from when I can).
If "Survivor" works for others in some situations, that's seems fair.
But I would not want it as a label for those who have lyme. I think "survivor" glosses over the chronic aspects of this disease complex.
"Survivor" sounds to the world like all is well and good - it's all behind us. Even if we know it's not that simple.
To me the term "survivor" is one who has succeeded. Success is a ways off still.
I suppose, "those struggling with lyme" could be used in the right context but not as a label or a brand. That could make some feel disenfranchised.
I have no perfect words, ever, but usually word it something like this:
I am a person with lyme; someone managing lyme; or someone faced with lyme,
I am dealing with lyme. And, yes, I suppose I am even a person who has chronic lyme (the term "chronic" not one the IDSA likes, of course).
or - to refer to others here are my attempts:
those who have lyme; those with lyme; those dealing with or those managing lyme.
I may use "lyme complex" or "lyme & co." In the right context, lyme "patient" - but not as a nickname or moniker, more for when discussing medical matters and the term "patient" just fits.
I just think it's best to avoid nicknames or labels. Lyme is not a brand. We are individuals who just happen to be dealing with a tough situation.
In communication with each other, there are still other ways to establish a caring atmosphere. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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gigimac
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posted
When I first saw people referring to themselves as lymies it really bugged me.
At times it almost sounded like some people were proud of it and I thought, I am not a lymie, I am not going to be labeled by this horrible disease. Giving myself the name lymie was like saying this is who I am and I accept it.
Over time I became more numb to this term and I have even used it.
But I am glad I saw your post. I think I have gotten too comfortable in thinking this is my life and this what I am.
I have got to get back to that mindset of "I will beat this."
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
I am going to give this some thought and see if I can come up with something.
It is now acceptable to say "I have cancer" without seeing people react like they did 40 years ago and I think that is part of our battle - acceptance.
(Not saying acceptance as in resignation, but acceptance meaning people understand the implication of an illness)
Therefore, I will assign some brain space to this. Good topic Keebler.
-------------------- I have a good time wherever I go! Posts: 665 | From Lost Wages, NV | Registered: May 2006
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posted
I used to say "Lymies" here on LN... but changed many years ago to "lyme patients."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dogsandcats
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posted
I am busted for "Lymie" use
Mostly cause it was a shortcut for me. Slacker that I am.
I will ponder a new name..
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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gigimac
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posted
dogs and cats, yes I have used the term too after hearing it so much. I began to use it cause it was an easier and shorter way to refer to myself and others with lyme disease.
Keebler, I agree that it does make lyme sound much less serious.
Posts: 1534 | From Greensboro NC | Registered: Aug 2011
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posted
Keebler, thanks for posting. I agree with everything you've said.
I absolutely hate the term "lymie" and refuse to use it. As you mentioned, it connotes membership in some cutesy club. And really, who would dare call a cancer patient a cancie?
I think Lyme patient, Lyme survivor, Lyme advocate, person with tick-borne disease/illnesses, person with chronic persistent infection(s) are far superior terms and more accurately reflect the reality that is Lyme Disease.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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At times it almost sounded like some people were proud of it and I thought, I am not a lymie, I am not going to be labeled by this horrible disease. Giving myself the name lymie was like saying this is who I am and I accept it.
[/QB]
That's why it always bothered me as well. It's like a cute name for a horrible disease. I feel that we lose credibility when people use it... As they write "I'm a lymie" in bright green font Posts: 169 | From The Poconos | Registered: Jun 2011
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Tincup
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posted
Keebler,
Yes, I agree. I don't believe I have ever used that word in all these years. As you said...
"Would we call those with cancer "Cancies" or those with Parkinson's "Parkies" - etc.? Of course not."
I use various terms to describe folks here. Some nice and now that I think about it, some not so nice. HA!
But I often call the people here our "members". We are ALL members of Lyme Net- some with Lyme, some not.
I also use the word "patients" if they have Lyme at the time. Rarely, if ever do I say "victims" as it doesn't suit me at all.
If it wasn't so LONG, I'd say folks here are the "best bunch of warm-hearted, smart and kind people that anyone with Lyme could hope for."
i think what is important for all of us, no matter what our circumstance, is to realize who we really are. And none of us are our symptoms.
May we each have honor and respect for ourselves.
Always grateful for the wisdom and kindness that are present here in this group ~
Posts: 164 | From North America | Registered: Mar 2009
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Dogsandcats
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posted
Coconut maybe Maddog?
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- I think Maddog may be referring to a bar song about those with SCURVY, a vitamin C deficiency that affected sailors dreadfully (could even be fatal) until a cure was discovered: limes &
packing plenty of limes on the ship for crewmen to eat throughout the journey.
"Lymie" also rhymes with a British slang term, "Blimey" used for surprise, alarm, shock or annoyance. Oh, Goodie.
Limey is an old slang nickname, often pejorative, for the British, originally referring to their sailors.
It has since been used as a derogatory term that relates to English people.
The term is believed to derive from Lime (fruit), referring to the Royal Navy and Merchant Navy practice of supplying lime juice to British sailors to prevent scurvy.[1] -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Silverwolf
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posted
<<<<< Keebler, and The Various Repliers >>>>>,
I Tho't about maybe Lyme-rs, but that didn't seem right either.
Generally I say Lyme Folk or Lyme Family here on LymeNet. Not sure what the best answer would be.
You are quite correct,there is nothing cute about this disease /disease complex.
I've been known to try to explain that I felt 'Slimed by Lyme'... like having to slog thru swampy slick gunk.
I am a Lyme Fighter, tho' weary more often than not.
When I was Dx'ed w/ CFIDs/CEBV in 1992 they used that 'Persons With' terminology.
Not sure the best answer?!?
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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MADDOG
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When I was finally diagnosed with lyme 6 months ago, I was relieved, not because I had lyme, but because I finally knew after 20 years of searching....
But, after spending an exhausting 3 months to find a doctor, an LLMD, that knew enough to start to help me.... Trying to come up with the cash or credit to pay for the treatments, cause we are not noticed as a real disease.... Worried about how bad it will get before it hopefully gets better.... Having people roll their eyes, or just say oh you only have lyme.
I think to be taken seriously, a cutesy name for a seriously chronic infection, a disease so painful that people take there own lives, is not the way to go.
If I wanted to belong to a club with a fun name...I don' t think I would join the lyme club... Its not a fun club...its an exhausting, painful club that should be taken seriously....
So the name lymies is like a slap in the face, making fun of something we have that is terrible, like its not a big deal!
To each his own...but I will not be a lymie..I am a person with a debilitating disease and I want to be taken seriously.
Thank you Keebler for bringing this subject to the open....
Posts: 78 | From connecticut | Registered: Mar 2012
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MADDOG
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posted
I am now sitting here trying to figure out if I should stop using the term.I am trying to decide if I mabe dont like the name Lymie.
I mean Aidsie,cancerie,MSie,Lou Garigsie,all sound really derogatory.
HHMMM!!!
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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MannaMe
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posted
I prefer to say "my husband is being treated for Lyme" rather than "My husband has Lyme".
Somehow saying he has Lyme seems to claim it and make it part of him.... I don't like that thought at all.
I hadn't really thought how "Lymies" sounds......Don't know that I used that term very much.
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Dogsandcats
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posted
MADDOG
I thought you were talking about the Harry Nilsson song...ha ha
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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posted
As someone who writes a lot about Lyme disease and the people who have it, I also ponder the best way to refer to them. Depending on context, I often choose among "Lyme survivor," "Lyme advocate," "Lyme patient," "one who struggles with Lyme," "one who is being treated for Lyme," "member of the Lyme community." I avoid "victim" and "Lymie."
Posts: 991 | From California | Registered: Feb 2006
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Tricky Tickey
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posted
Another would be "fighting tick borne diseases".
"with borreliosis"
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Excellent points, Tricky, Tricky.
It's important to shine the light on the set of "Tick Borne diseases" and it also helps to call lyme what is really is: Borreliosis.
The residents of Lyme, CT have been wanting that since 1977.
Neuroborreliosis is also helpful (as a term, that is - it's sure not helpful to have it :-).
BTW, if anyone wonders why TBI is not used for "Tick-Borne Infections" -- that's been taken by those with Traumatic Brain Injury.
So TBD was the next likely initial set, switching out "infection" for "disease" - I think that's the reason, or at least part of it. I just learned early on not to use TBI but, instead, TBD.
TBD can also mean "to be determined." Also fits. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Oh my gosh--"to be determined," ain't that the darndest truth.
I like saying I have neuroborelliosis. No skeptical looks, often confusion and even concern, but no dumb questions.
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
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posted
- FuzzySlippers,
You ask: Warrior?
Just my thoughts here.
Does that then put someone right in the middle of this political battle?
Sadly, it seems the IDSA is in full combat mode, blocking the truth, but I do not want to ever consider myself a warrior.
I did not enlist in this army. I do not want to fight this fight. I just want the information and the sources to get my life back.
However, since that's been so hard to work out, I do my bit to try to help others with details that helped me. But "warrior" does not suit me.
I am glad for those who can take up a torch and light the way in this dark fight. And, yes, some could be called "warrior" but the average person who stumbles into lyme does not want to be in a war.
They just want to get better; they are not looking for labels or titles. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I like warrior. Someone, someday is going to have to fight, even the wounded.
Posts: 184 | From taking pills | Registered: Oct 2011
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posted
None of us wants to be labeled. Is there anyone here who does not want to find healing?
I'm a Lymie, a Lyme Patient, a Person with a life derailed, and nearly lost, from late-stage, fully disseminated neuroborelliosis and associated vector borne infections.
Am I a Lyme Warrior? You bet I am.
Is my personal health situation more difficult then any of the other "Lyme Warriors" here? I think probably not.
Just like nearly everyone else with this illness, I have had to fight tooth and nail each step of the way.
For example, I've had to fight to raise myself from the bed, fight to get my legs to finally work again, fight to use arms which were paralyzed from infection, fight to see through blinded eyes . . .
fight to find good LLMD's, fight to survive 7 major surgeries within 2 years, fight to survive having cancer in the midst of it all the Lyme illness, fight to find decent home health care, fight to be heard -- the list is endless.
If I hadn't fought with determination and persistence, I wouldn't have survived this long. If I hadn't had an army of angels from above, friends, and family, I would not be here.
I'm a Lyme Warrior. And it's not a position I ever wanted to be in. I was drafted into this!
I'm not posting this to get into an issue of semantics. Lymie, Lyme Patient, Person with Lyme, Person with or without a label, Person whose status is yet-to-be-determined, Lyme Warrior -- whatever.
I think everyone with this dreaded affliction can agree that it's not something any of us has signed up for.
And however we choose to describe ourselves or the manner in which we deal with this unimaginably devastating illness is up to the individual.
And it's perhaps kinder not to expect one to censor the way one deals with it, including, but not limited to, names that one uses to describe oneself.
Having said all that, I will honor requests to refrain from calling those on this board who have indicated that they don't like it, what I traditionally considered the affectionate nickname of "Lymie," if they ask me too. No worries, friends.
Hugs from Fuzzy, The Lyme Warrior who is quite curmudgeonly today :-)
Posts: 503 | From Maryland | Registered: Oct 2007
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My husband just walked in the room wile I was posting here, asked what I was doing, so I told him.
He has suggested that perhaps in lieu of Lyme Warrior, I could be viewed as a Borreliad ....
or a Borreliac .....
*rolling my eyes* LOL!!!
Posts: 503 | From Maryland | Registered: Oct 2007
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randibear
Honored Contributor (10K+ posts)
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posted
i'm just too tired and sick to care what people call me. doesn't bother me.
lyme patient, yeah, got that, survivor, no, because i have not survived this. i am enduring not surviving...
surviving means to live and the way i live is not "living" in the normal sense of the word. i am barely making it lately and that is not "surviving" to me.
lyme advocate. hell no i don't "advocate" for lyme. that sounds like i'm out there promoting it or something.
lyme witch maybe. since i feel like that alot.
but if someone call me something, please call me for dinner or lunch...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I mean . . . in order to understand all this, we've had to earn Google Medical Degrees and become familiar with many different medical disciplines. Then we had to learn about entomology, nutrition, alternative and complementary applications, pharmacology, vector borne this and that, and Lord knows what else.
A well known LLMD remarked recently at a Lyme Conference that sooner or later there will be a medical specialty dedicated solely to treating Lyme Disease Complexes, including co-infections.
He wondered if those doctors might be called "Borreliologists." lol
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
Well, For Dinner Or Lunch..., nice to see you back - so what happened on the cruise?
Someday, I'd like to be called SuperCalifragilisticEXBorreliosist...
Posts: 13116 | From San Francisco | Registered: May 2006
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lymeinhell
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posted
Just as long as I don't hear 'Lyme's', call me what you will.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
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MADDOG
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posted
I got it, PLUMBER .
Since this came from Plum Island.
MADDOG
Posts: 3996 | From Ohio | Registered: Oct 2000
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quote:Originally posted by lymeinhell: Just as long as I don't hear 'Lyme's', call me what you will.
- AMEN .. that is the annoying one!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It can be fun to think of alternative nick names but, really,
I don't want ANY nickname. I don't want to be branded with ANY label.
Most of those who have lyme (or any illness) don't want to be reduced to any nickname in the eyes of the public. And the web is public.
All that aside, while I've never wanted to be caught up in such a horrific ordeal, the learning process has brought some riches of discovery &/or appreciation (which I'm too tired to concisely & adequately describe).
. . . and it's been heartwarming to see others who are determined to come together and shine the light to set things right again. I am thankful for all those who have the energy to help improve this situation - while keeping each person's dignity in mind.
Rather than nicknames, this has me thinking about the
QUALITIES that help along the way. What helps us navigate the waters?
That's a list I'd be interested in. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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desertwind
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posted
I try hard not to over-identify with my "illness" or condition.
Don't particularly like the term lymie myself but to each his own.
Many "Chiarians" who have had Posterior Decompression surgery like to call themselves "Zipperheads". I hate the term and will not refer to myself as that even though the back of my head does look like a zipper!
I am a person who, amoung many other things, happens to have lyme.
I find a way each and every day to find that sacred connection within myself that reminds me I am much more then my illness.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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seekhelp
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posted
Call us broke because that's what this damn illness does to most. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Keebler: re qualities to get through, LOTS of patience and flexibility! Being informed, willing to communicate.
Posts: 13116 | From San Francisco | Registered: May 2006
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kam
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Member # 3410
posted
Keebler....wondering if I did?? I rarely use the word but think I did a while back.
sorry if I did. I'll go back to not using it at all.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Broke Syndrome. Very nice. That's definitely what I have.
It also drives me crazy when people say Lymes.
-------------------- Just a catepillar, full of imaginal buds. Posts: 143 | From Philadelphia, PA | Registered: Mar 2011
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Dogsandcats
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posted
When I used to work and a meeting went on too long I would say:
The horse is dead - dismount.
I don't know who originated it, some say Teddy Roosevelt?
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
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posted
- It's still a valid consideration, so if people want to comment, they can go ahead. For new folks, this might be good to see . . . still, it's fine to let this just settle into the background.
Kam,
this was not about any one person using the term but there had been several threads here with the term and a few posts about various new FaceBook pages just for "Lymies"
- I was simply suggesting that may not be the best description for the whole web world to see (on any site) or even how to think our ourselves.
I was just making a general statement about not using ANY nickname for those with such a devastating illness. It poses a risk to credibility.
Here, and on other discussion boards, the elements of friendliness and support can certainly still be rich without nicknames which can be spun around opposite from good intent. -
[ 05-07-2012, 11:02 AM: Message edited by: Keebler ]
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Lauralyme
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posted
I am guilty and you are absolutley right Keebler it does make it sound like some fun club which it certainly is not.
The reason I did it was mainly laziness, as it seemed like a mouthful to say "the guy with lyme" when I could convey that to my friends with just one word.
I definitely won't be using the word anymore, thanks Keebler for bringing this to light. You are right other serious diseases don't have cute nicknames.
-------------------- Fall down seven times, get up eight ~Japanese proverb Posts: 1146 | From west coast | Registered: Mar 2008
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Keebler
Honored Contributor (25K+ posts)
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posted
- Bringing this up to the top for those who may be new to lyme.
It's especially important to consider this before the holiday family dinners and reunions with old friends. No new nick names are needed. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
I personally am very offended by the word "Lymies."
Are breast cancer survivors referred to as Breasties? Are leukemia patients referred to as Leukies? Are men who suffer from prostate cancer referred to as "prosties?"
HELL NO!
I had a dx of Lupus back in the day. A nurse once referred to me as one of her "Lupies." I took extreme offense to that term and let her know it. I was a young woman with a certain diagnosis. I was not at all willing to confine my illness to her cute nickname.
People with medical diagnoses need to be described as having a xyz disease, period. There is no room for cutie-pie nicknames for very serious and debilitating diseases.
Posts: 1885 | From here | Registered: Jul 2012
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posted
I understand it. I am on a board for Sjogren's and I thought it sounded so stupid for people to call the patients shoggies... not sure how they spell it.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Shoggies? Really? Are we in 3rd grade??
UGH, UGH, UGH.
I HATE cutesie nicknames for sufferers of diseases.
Seems like the diseases women suffer from are more vulnerable to this type of nomenclature. IMO, it's completely unacceptable.
Posts: 1885 | From here | Registered: Jul 2012
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I certainly understand that some see it as an endearment in a closed circle. But, even here, this is not a closed cafe but, really the world wide web. And terms move from here to outside circles, too.
It's not just about how we (who deal with lyme) think or feel about the term.
It's how we are presented to our families, and the world, with the use of such a nick-name & label.
It undermines the truth and sets us up for disregard in the world at large. How would anyone who knows nothing about lyme take anyone who has a sing-song nickname about this illness? Probably not very seriously.
Then think of how those who are dead-set against the idea of chronic lyme, itself. They are all to happy to call us names. And that causes damage. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
And maybe, some such as myself, used the term due to being new to the site and, momentarily until this reading, felt that there were others...oops, maybe others is an offensive term, too...who understood the quirks, foibles, faults, and frustration of this syndrome.
See, we could argue that it's a mutliplier of symptoms and transmutations depending on each person's health, reactions, etc., or we could take umbrage over a term that I personally never felt or thought was cute, but more community.
C'mon, this sounds more like a thread twinges with rising feelings than one of support and education.
Perhaps a note within a post that states your preference would be better than the tones I inferred from some of the responses would be more helpful, or even a note that this is a frustration or a venting would warn readers.
There are so many ups and downs with this condition that I haven't come here to be kicked when I'm down already.
Our paths are definitely different, but we are all human--unless we someday find out that the Bb (autocorrect just put in BBQ for me) were injected by aliens or a country out to destroy people. (Humor, though weak, is my go to for trying to leaven a situation.)
-------------------- 'Hope' is a thing with feathers, that perches in the soul-- Emily Dickinson Posts: 160 | From Indiana | Registered: Nov 2012
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
again, i don't care what the hell they call me. i just want my life back...
i am myself. i'm not any different. and i've been called redneck, hick, and let's not forget fat, obese, and on and on.
names don't bother me anymore. my self image is so bad it can't get any lower so what's words???
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree with randibear. I don't care what anyone calls me, I just want my life back.
We are dealing with life and death here on a daily basis. So, if you want to call me lymie, lyme infested, person with lyme's, and on and on...I have bigger problems to deal with, so I don't care.
Actually, you can call me anything, just not "psychosomatic"
Everyone has their own pet peeves. I understand that the word "lymie" and "lyme's" gets under some people's skin like nails on a chalkboard.
I truly understand Keebler. I have a very sensitive, inflamed nervous system too. But the problem lies in our own reaction, not in other's word choice.
We cannot control anyone but ourselves. When others call Lyme disease, Lyme's, in error...I can't afford the adrenaline burst to get angry. I know what disease they are talking about. We are here to support each other.
We are all suffering from this terrible disease. Can't we allow fellow lyme sufferers, lyme victims, lymies, lyme patients, etc, etc to call themselves whatever they choose?
posted
I haven't read all the posts here, but I don't even like being associated with the word "lyme". Why? because the physicians associate that word with the short term, easy to fix disease they think it is.
My 1st llmd referred to the disease as "borreliosis" (sp?) That would work, but as I have often told people who have asked me what my illness is, "multiple infections, that are chronic". That seems to cover it for me. No stigma from the L word. I guess Tick Borne disease might work but I don't particularly like that either.
I've also said just multiple viral and bacterial infections. People seem to not be so weird about this.
Borreliosis Complex? Not sure. This is just my experience.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
twicebitten: I told the ER Dr I had multiple tick-borne infections.
When I got a copy of my records, I noticed he wrote down "tic" borne infections and put it as a mental health issue.
posted
Well, I don't accept medical records turning this into mental, when it's physical. Even when it's in our brains too, it's physical. I go back and tell them to update my records and bring them brochures. Or I write a letter and have them put it in my file.
I also educate the entire staff, telling them it's here, they could get it, and how to protect. I have educated a couple ERs here - we can do it.
Posts: 13116 | From San Francisco | Registered: May 2006
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Keebler,
EXACTLY!
Posts: 1885 | From here | Registered: Jul 2012
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desertwind
Frequent Contributor (1K+ posts)
Member # 25256
posted
I hate that too. I am much more then a disease and refuse to identify myself as such.
In the Chiair Malformation world there are those who have have corrective surgery and like to call themselve "Zipperheads" because of the large scar left from the surgery. I had the surgery and would NEVER call myself a "Zipperhead".
I am someone who has lyme disease and someone who had decompression surgery to correct a Chiari Malformation - period. It is not the totality of who I am.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
No disease sufferer should be called by any cutesy name ! I have been stressing that for over 20 years.
Even LdP's for Lyme disease patients doesn't quite work.
posted
I hear you lax mom. I found out the ID doc wrote all sorts of crap in his notes, things he said I said which were all WRONG. Now, other docs have these "notes" and they make me look crazy. He claims I had "been on the internet", "looking up junk medicine articles" and writes the wrong name of my llmd, as well as misspells my sisters "morgellons".
I don't think most docs even remotely catch about 1/4 of what we say anyway. At least that's been my experience.
-------------------- One day at a time Posts: 409 | From TX | Registered: Mar 2004
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Everyone has their own pet peeves. I understand that the word "lymie" and "lyme's" gets under some people's skin like nails on a chalkboard.
I truly understand Keebler. I have a very sensitive, inflamed nervous system too. But the problem lies in our own reaction, not in other's word choice.
We cannot control anyone but ourselves.
-Amen to all of the above-
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- How are those with lyme seen to the world? Not in a good light, apparently.
Professional Paper calls those with lyme "Lymies"
Authors seem to think that all those with lyme wish to indentified as "lymies" --
not helpful at all for understanding and I take this as a demeaning insult - but it matches with what most IDSA doctors think so it should have been no surprise.
No one would call cancer patients "cancies" just because they seek out more information about their illness or form a support group.
Pointing out the "negative feedback" those with lyme get from the medical world also makes them sound lacking in character and intelligence, like the "negative feedback" is deserved, somehow so then patients storm off and form a little club.
They could have drawn upon Lorraine Johnson and Pamela Weintraub's work to shed some light but the goal here did not seem to be finding the truth, just petpetuating misperceptions about those with lyme.
Competing online viewpoints and models of chronic illness.
by Jennifer Mankoff, Kateryna Kuksenok, Jennifer A. Rode, Sara Kiesler, Kelly Waldman
Excerpt: Page 8; column 1; paragraph 2:
. . . Over time, participants began to take on what Castells characterizes as a “defensive identity” that can lead to the formation of a community designed to resist, and ultimately change, the current cultural norm [9].
Thus the negative feedback participants received
led them to identify with a new community of people, “Lymies,” as they developed a new understanding of their disease. . . . (end excerpt).
Topic: CALL FOR PARTICIPANTS: study of individuals managing Lyme disease -
Posts: 48021 | From Tree House | Registered: Jul 2007
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I didn't "get" it until I went on dinet looking for info on Pots due to my recent diagnosis. They were calling each other "Potsies". It truly did diminish the severity of the syndrome that is pure hell.
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