randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
advocate -- to promote...
i definitely don't promote lyme so i'm not a lyme advocate at all.
frankly, i don't care what the heck you call me. i'm "sick"...period..
call me lymie, call me diseased, call me a patient (well sometimes not really cause if you don't see a doctor how can you be a patient. that means you're under a doctor's treatment.)
i just flat out don't care...sorry but i have so many other things to worry about that this is small change to me.
i've given up trying to educate opinionated stubborn willfull ignorant people. they're blind by choice so i don't have time for them any more. i just don't mention it, not worth my time and me being upset.
ya'll on here know i have lyme, so what?? call me anything you want.
i'm easy...just sick...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- If we put ourselves down, we allow others to do so, too. Any nickname that demeans one, demeans all in that population. And then the general world just picks it up.
Not the first time in history when demeaning nicknames for any group of people has caused deep pain. But I thought we were beyond that by now.
The thing is that when academic papers call any group of persons who are ill by a nickname, in the manner below, that is a terrible insult to all and impedes progress.
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.
This entire paper was more about looking at how those on line behave, not so much about WHY we need to look elsewhere.
Why they negleted that is beyond me and very sad. Were Johnson, Weintraub and others of similar cailber to have been consulted, this could have had some kind of purpose.
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). -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Keebler you are 100% correct.
And thanks for continually reminding us that the term "lymie" is degrading and insulting to people suffering from Lyme Disease.
It is rather disturbing to me that so-called medical articles have described "us" in this manner.
We most certainly are not "a new community of people, "Lymies," as they developed a new understanding of their disease..."
There's nothing "new" to understand. Thanks to IDSA guidelines, Lyme Disease is STILL considered hard to get and easy to cure once you have it. What BS.
We collectively are patients who are sick with a chronic, persistent infection that is difficult to detect and even more difficult to cure.
And let's not even mention co-infections which obviously complicate matters much more so.
It is absurd that so-called scientists do not consider the works of Weintraub, Johnson, McDonald.
At the end of the day, justice will prevail as it always does.
Until then, do not refer to me or my family members as "lymies."
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
posted
I hadn't really given it any thought. When I was diagnosed with MS and joined an MS forum, it was common practice there to call ourselves 'MSers', so it never even occurred to me that someone would object to the term 'Lymies'. I don't think anyone would think of people with MS in an insulting way even though the term MSer was used. In this age of fast communication and shortcuts, it's easier to say 'MSer' than 'people or persons with Multiple Sclerosis'. Similarly, the terms 'dx' and 'sx' are used instead of 'diagnosis' or 'symptoms'. It doesn't really bother me to be called a Lymie unless it was done intentionally derogatively and I'm not aware of anyone who has done that to me or anyone else.
However, I'm glad you brought this our attention because I don't want to offend anyone here so I will refrain from using it.
It does seem more medically correct to say one has 'Lyme Complex' since it affects so many systems and carries co-infections. Not everyone with 'Lyme Complex' is a 'Lyme advocate' however.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
| IP: Logged |
posted
It's true....lymies makes it sound like a fun party group. I have the same ugh reaction when I hear lymes, lyme community (I didn't buy real estate or sign up for this!)....
I don't have only lyme, but an added bonus of a fistful of other TBD's who signed up for the ride too.
I think that's why people don't get it under the "LYME" moniker. They think well you took the abx they says 'cures' it, so you should be better.
ARGGHHHH! They treated the original octopus head but never addressed all of the poisonous tentacles hanging beneath the surface. That's why the usual cure didn't work...plus the jerks who misdiagnosed me from the beginning, 20+ years ago allowed my body to become toxic even to itself. (tell me again why we can't sue these arrogant flucks?)
I even cringe from moving from lyme disease to tickborne illness b/c we all know it's not just ticks that carry and transfer these diseases.
I believe we have to use STRONG WORDS to name this life altering total systemic crisis! WE NEED FIGHTING/DESCRIPTIVE WORDS TO GET THE SEVERITY OF IT UNDERSTOOD.
So let's get our creative juices together and give it a new name that will not garner sympathy (god I hate faux sympathy the worst) but make people see it's not just a limping or soreness creating condition. WE KNOW IT IS DEADLY and LIFE ALTERING HELL.
Some words that come to me top of mind?
-plague -pathosis -epidemic -system collapse -pandemic -contagion -hydra (see octopus example above) -pestilence -scourge -legal murder at the hands of bad doctors and testing methods, insurance denials for treatment, pharma disregard, etc???????????
and the list could go on and on.....but to us, WE HAVE ALL OF IT.
Posts: 867 | From PA | Registered: Jan 2006
| IP: Logged |
GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Legal Medical Negligence and Intended Medical Neglect
Pandemic
Life Threatening Infection
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As this thread has gone to p. 2, here's the link again (that may not be seen back on p. 1):
When I responded, I thought they wanted to know more about the educational side of patient self-research via the web. Seems I was unclear as to what they wanted to prove. The reasons why were not of concern, just behavior that deviated from the norm.
posted
Good question, healthywealthy - it's a challenge to come up with brief phrases that say what's going on.
First idea: pathogenic pandemic, since it's a mix of pathogens and it's pandemic.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
If it were called a pandemic, Lyme would get the respect and fear it deserves.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I still say if some very high ranking politician or say angelina jolie or somebody got a serious case of lyme then maybe just maybe somebody might pay attention. But they would sweep it under the rug and ignore it.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
One of them dying.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There have been many deaths from tick-borne infection. They are just not attributed to TBD (but to other causes, that can certainly result from TBD) in the final certificates. [TBD = Tick-Borne Disease]
One's fame, social, political or financial stature can help those in such positions to obtain better care - and also better "whitewash" explanations in the press. With better care, of course, they stand a better chance. But that is not always the case, either.
Still, I can think of some who have not made it and some who are chronically ill who could certainly be dealing with TBD.
To honor those whose lives have been cut short by tick-borne disease: ------------
Success & Progress posts -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
wow! I jsut ran across this post.
SORRY to Keebler! for all the times I said it , and to anyonw else it offends, but
I never menat it as a bad or negative thing! I actually came up with the word myself when I first started reading about lyme and the people that suffer with it.
I must say, though, that I find it extremely endearing of a name! and I will continue to use it as saying "sufferer, patient, advocate, etc." are all so formal and rigid and non familiar.
when I use the word Lymie I use it ONLY for those I know of or acquainted with who have tick borne disease.
If I didn't have it myself I don't think I would call anyone that name since it would be then a negative slang term.....
so now that I have said that, I can see how this kind of relates to THE N WORD.... Hmmmmmm.... I know people that call themselves and their friends (the N word). I really hate that. maybe this is kind of how you feel Keebler et al.?
I might be upset if I read it used in a professional journal entry or something.
Sheila, that is interesting- MSers. So "Lymers" anyone?????? is that bad too?
I am in the habit of shortening things I can because I am like the person above- like things fast and easy to say.
the other word I use to describe almost everyone with any disease - for the sake of shortening and ease- is "___" person. cancer person, lyme person, MS person.....
that's all I got.
feel free to call me a lymie. there are much worse things I have been called! haha
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
I appreciate that you "when I use the word Lymie I use it ONLY for those I know of or acquainted with who have tick borne disease." (end quote)
and are wondering what other term might be an endearment or descriptive term.
The thing is that this is a public web and when it's used even here, or especially on world-wide-facebook type of sites, everyone thinks that's okay then. And it grows. Those dealing with lyme have enough of a hard time as it is to be taken seriously (as not having the "yuppie flu") . . . .
As for other terms, when posting about certain symptoms or stuff that tends to affect "those with lyme" (that works) --- "those dealing with lyme" --- juggling all this -- managing -- facing --
Yet in more information conversation when not talking medical stuff but just life stuff, you can address the particular person you are replying to with "sweetie" (IF that fits for those you already "know" of course and they don't feel that to be condescending - the web can be very tricky in that way).
You "dear hearts" (or "dear hearts and gentle people") . . . "you fabulous folks" . . . I wish I could think of more. It's a talent to really punctuate our speech and I'm more of one who can identify that talent in others but must not have been in that line the day it was being handed out.
I always like "Happy Campers" or (not) happy camper. Wish I were smarter than the average bear to come up with a few nice endearments for our time. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
YAY Keebler! I pointed out how cutsie terms for disease sufferers was inappropriate to a couple of people who were using "lymies" in newsletters in the early 1990's, before even Lymenet was invented.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Ann,
I appreciate your comment and emphasis on how it's such a kick in the gut in so many ways.
I'll certainly take "sweetie" (in this context). Thanks, Cowgirl in Ohio! (Bet you'd like to ride a horse into a cool sunset?) -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
well, y'all, it's been awhile and guess what? still don't care.
it's ok for doctors to say we're nuts, psychosomatic, or whatever, but, hey, we all know their gods right? and no one questions what they are allowed to call us. now that makes me mad.
otherwise, y'all know I speak to you with great affection. however, you do know when a southerner says something about you and then says "bless your heart" then you're in trouble!!!!
I'm waiting to see who understands that one....lol
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When we put ourselves down with (what some say to them is) an insulting nickname, it then gives permission to others to do the same thing right back at us, and they won't usually stop with just that insulting nickname that says this is all just "child's play"
If we (as an individual person) don't care, that's one thing. But when many do & voice that, and there is a professional matter of integrity at stake - this is about serious disease that has terribly altered our lives in devastating ways -- it does matter for others. It's about respect. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
and how do we get doctors to respect us if they think we're crazy?
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Not in answer to the question but any doctor who actually uses "crazy" is insulting everyone who has any kind of mental health issue. Most may not use that term but other terms and innuendos can be just as insulting and show their lack of education in such an important area of medicine.
But I know what you mean. Even if they don't use a "trigger word" they can imply it. And we can identify when that occurs.
So, back to your question.
Q: "and how do we get doctors to respect us if they think we're crazy?"
Why would we WANT to try? And why would we keep trying once they declare themselves, so to speak?
It's never going to happen. It's a waste of time, energy & money.
Don't go to those. Vet them first with all available resources (support group experiences, their affiliations, the writings, etc.).
Get educated about what we can do for ourselves for certain symptoms. There is so much we can do for ourselves in many aspects.
Especially, don't go back if you first walked into a mistake. If we return, we signal loud & clear that we agree with them. They've already shown their colors. It's co-dependent to the max to say we "neeeeeeddd" them when they've already discounted us and there is no way they even want to learn enough to help.
As you leave (or arrive) somehow, see if you can quietly and without attention, look a the inside first page of your medical file with that office.
If "difficult patient" is marked there. Turn around and never go back. You will never get proper care.
Don't talk ourselves down in any way or with any term at all. Don't defend yourself and say "I'm not 'crazy'" because all they hear is "crazy" - they will not hear the "not" - ever . . .
. . . never, ever (should we utter that or similar terms- or go back to those doctors who are of that vein to so easily believe that. It speaks of their character and their lack of abilities & education).
Don't defend yourself when put down by a doctor (it's never a situation that is going to have a good outcome when we are in such a position with a doctor).
Standing up for yourself, though, is a very different thing. Keep it short & simple - a statement, not a beg for acceptance. Keep the tone solid and stay centered inside your head and heart. And move on out in a composed manner (as much as possible, even if limping or dizzy . . . stay centered).
The difference between "defending" yourself and "standing up" for yourself can be nuanced. Mostly, defending means we are trying to convince them. Forget that.
Standing up for yourself: . . . state your position briefly, do express yourself yet stay centered and keep dignity. Do not beg or try to convince.
And, aside from lyme / TBD issues . . . there are still some good doctors out there for routine or other care. Find them. I still have a great deal of respect for those who deserve it (even if the numbers dwindle once lyme enters even by a whisper and is not about the appointment, per se).
There are doctors who can still consider that a patient dealing with lyme has a complex case they are not primary doctor to, but they are working only on one basic aspect of care at that time. -
[ 07-30-2014, 04:51 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I DID see some "lymie" words on some Lyme clothing for sale on the web today when searching for a T-shirt.
I would never buy something that says lymie on it.
I do stick to it though, that you all here are my lymie friends. and that is my term of endearment for this great crowd from my perspective.
I usually only use the word when I am talking to my best friend about what you all say here or do and the great advice I get.
I will try not to type it here in reference to people again. Again, sorry for that in the past as I never thought about it.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
quote:Originally posted by randibear: I still say if some very high ranking politician or say angelina jolie or somebody got a serious case of lyme then maybe just maybe somebody might pay attention. But they would sweep it under the rug and ignore it.
how about "w"? high-ranking enough? doesn't change anything, just gets ridiculed for being stupid.
Posts: 1927 | From se usa | Registered: Mar 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
It's hard to know how to explain the pain that term brings. If someone dealing with lyme cannot hear that from someone else dealing with lyme, how will doctors ever treat anyone with lyme with the respect they deserve?
I am not your lymie friend. I am no one's lymie friend. It's an insult for me (as someone here, addressed in this group) to be called that, again, when it's been discussed how that makes me feel.
You're not just posting to feel good yourself about certain terms when they address others. How the others feel, too, is imperative.
Please reconsider holding onto that term. If a feeling of connectedness brings you pleasure, that's great.
But by calling others insulting nicknames, now matter how cute it may sound to some ears, it just tears through the hearts of others. There must be a term that will not do that.
And imagine those who are not able to voice this for themselves, bedbound, unable to move, misdiagnosed, close to death. Imagine those whose lives have been lost to lyme. Do we want to reduce them to a nickname that some have used as in insult in certain circles? That's what "lymie" does.
It does not translate for everyone the way it does in your ears. There is danger in that word, danger of continued hurt. This illness brings tremendous hurt and disrespect. It's brought many close to the end; it has taken some past it.
And hearing, seeing "lymie" can just push all those buttons. Big time. It brings home the harsh reality, the depth of it all.
I know that my reaction may be felt more deeply than some others may. Lyme brings enough pain and torture. We don't need to be demeaned any further. We can find words that convey the desired intent that the receiver can also feel good about. -
[ 07-31-2014, 02:10 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
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).
-------------
To that I say: Like Hell. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Ha ha Randi- I totally get it. I had lunch with friends who are moving to Missouri next week.
I gave them the same advice- you can say anything you want to someone- and it will be ok- as long as you follow it with "Bless their heart" or "Bless your heart"
This is written with a light heart and smile. As I am from a "Bless your heart" family, I hope I do not offend.
Lymie does not offend me, but we all have our opinions and feelings. To each his own......
-------------------- 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
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- There are other word-labels that offend some but not others, too.
If something diminishes one, it diminishes all. The ways just may not be apparent at first glance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Keebler is 1000% correct on this issue.
Do not refer to me as as a "Lymie," bless your heart!
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I guess keebler we have to disagree on this one. but I will refrain from using the term.
but I will remain the querulous virago that I am.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
well I don't find lymie insulting- dindn't even think about it until I came across this old post.
I HATE when people call me "sweetie" or "honey" or anything else that sounds like maple syrup unless they are my grandmother or someone else EXTREMELY close to me and even then I may CRINGE a little about it!
but... I dont tell people this when it happens as there are bigger fish to fry as far as I am concerned.
I already said I won't use the L word here any more as long as I can remember. that is the BEST I can do.
as far as people feeling good here and others helping them acheive that, well, isn't that the whole idea of on line forums? to feel good? be connected to something? share? ?????? if I didn't feel good about posting here why would I bother to do so?
I happen to be one of those people that goes on with their unmerry little lives without having to point out to every person that offends me that they are doing so.
If I did, and if everyone else did this, it sure would be one bitter sobby place to be, in my opinion. People ruffle my feathers and insult me and actually down right hurt me almost every day of my life.
I have, more than once, had my feelings hurt here by a number of people. too bad, that is what I say.
it is the price for being human and going on line to share my life here with strangers.
I just want to be me.
I walk on enough eggshells. the thought of typing on them makes me sad.
maybe this shouldn't be a public forum. does anyone know of any private ones?
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
I happen to be one of those people that goes on with their unmerry little lives without having to point out to every person that offends me that they are doing so.
- Exactly.
Bless your little pea-picking heart!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
I DO feel that it is an initiation into the deepest parts of yourself in many ways
Thanks for the tip Family
-------------------- *Know ThySelf. *Organized Chaos. *All That We See Or Seem ..Is But A Dream ..Within A Dream. Posts: 6 | From United States | Registered: May 2015
| IP: Logged |
quote:Originally posted by randibear: however, you do know when a southerner says something about you and then says "bless your heart" then you're in trouble!!!!
I'm waiting to see who understands that one....lol
Heheh...I have an aunt from Texas, so yeah, I know about the "Bless your heart" stuff!
And I don't care about being called "Lymie", heck it's part of username here! In fact I purposefully made it worse by spelling the second part of it "loo" (as in the British slang for bathroom) instead of "lou", like the name.
And no, my name isn't Lou, Louise, Louisa, or anything close. But I thought "loo" was appropriate because, thanks to what I now know to be Lyme, I'm ALWAYS in the loo, even if I go for a long time without drinking anything! lol
But then, I have a goofy sense of humor and laugh at myself a lot, because I really do believe the old saying about how, "If you can't laugh at yourself...." I was once reading something about Aspberger's Syndrome and they were saying how people who have it call themselves "aspies" (even though they've changed the medical name now).
But I think I can somewhat understand where the rest of you are coming from as far as the world not taking this seriously enough. And I must admit I found it a bit disturbing that the docs, researchers, and others in the medical community are referring to us as Lymies. I may personally have a goofy sense of humor, but a goofy sense of humor is definitely NOT needed in medical journals, articles, etc. I agree that this was disrespectful.
Now I know this is going to sound hypocritical, but I think for me it comes down to a sort of "It's o.k. for me and certain others to call myself/each other that, but the rest of you had better not" kind of thing.
For instance, it's perfectly o.k. for me to tell one of my girlfriends something like, "I feel so bad about last night, I was being such a b**** to my husband," but let my husband (or any other man, and most women, unless they're close friends and I know they're joking) call me that and watch it hit the fan! lol
And some people even use racial slurs that way, it's o.k. for them but no one else and you know, I get that. It doesn't bother me at all. And I think it's not so much that people are trying to be hypocrites in doing that, I think it's just that when we use terms like that like between ourselves -- whoever "ourselves" might be -- we feel safe doing that because within our group, whether it's something that sounds like a racial slur,
or the b-word between girlfriends, or "Lymies", "MSers" or "Aspies" or whatever, we KNOW that these words are either terms of endearment or if not that (I wouldn't call "b****" a term of endearment!) then at worst, a joke. We're only joking with each other, and WE know that, but if someone else comes along and says the same thing, we don't know if they're joking around or not. And it usually seems that they're not!
So, I don't care about being called a "Lymie", except perhaps by the medical community. And the world in general -- meaning those who are clueless about Lyme and don't give a hoot about us anyway.
-------------------- Bless the Lord, oh my soul. -- Psalm 103 Posts: 102 | From WA | Registered: May 2015
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's hard to explain when it is used in a nice way in closed circles that those circles are open view - & nicknames have a way of being kicked about.
The tendency is that if someone says their name is "Al" others will call them "Al" - everywhere.
Why this matters:
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. The sing-song sound in some ears sounds like playful song.
Would we call those with cancer "Cancies" or those with Parkinson's "Parkies" - etc.? Of course not.
Such school yard nicknames can seriously undermine the serious nature of lyme and those who deal with it, in all its very grown up complexities.
[When I first posted this, I wrote that] 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.
Again, Would we call those with cancer "Cancies" or those with Parkinson's "Parkies" - etc.? No. It would be seen as an insult and demeaning. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Pulling from page one, as those who click on at this point won't see this:
How are those who deal with lyme seen to the world?
Not in a good light, apparently when some professional Paper calls those with lyme "Lymies" - 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. . . .
. . . Participants worked to increase their new model’s legitimacy by engaging in activist behaviors. . . .
(end excerpt).
Very insulting to those with lyme. Be sure to go to the place of the excerpt for fuller explanation of how authors insist "Lymies" are just wrong.
Again, serious doubt as to if they would refer to those with cancer as "Cancies" etc. You can bet they would not. Would those with cancer refer to themselves as such, either? -
[ 05-28-2015, 08:15 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
Totally agree with Keebler on this. Do not call me or my kids a "lymie."
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I don't see the problem with it. That's what we called ourselves for years until it became politically incorrect. At least we had a label at a time when many didn't even have a diagnosis.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I call us "lyme people" now. I used to use lymie because I actually thought I made it up! now it has lost it's novelty with me and I don't like it any more., but....
if I do read it in a published article it does get me uptight! I , when used it, used it only ONLY in personal settings to include those near and dear to me as in a special club or something.
Keebler, I understand and appreciate your thoughts here on this. but, no matter how hard anyone tries to get rid of something- anything!- there will always forever be someone that doesn't care what other people think, b) always be that person that does it for spite! , c) always be some one new (like I was) that thinks they invented it!
iin other words, please don't lose sleep over this! you are worth way more than that!!!
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We do not need nicknames. We do not need labels. Especially when used out of spite to hurt others.
"lyme people" can be used in a very demeaning fashion, too. This is about how the world see us, what they think by the cute nicknames some choose, even if well meaning and wanting to be inclusive of all.
Important reference, the "oh, YOU people" or "your people" remarks have been used for many years out of hate toward certain groups. What works around a café table with no ill intent does not work for entire groups.
This is about dignity. If the use of labels or nicknames demeans, it strips dignity. When a nickname is used by one in a public setting as a discussion board, others in the wider world think that is okay. Nicknames, labels, do not instill dignity.
When someone says they are insulted by something, they are insulted by something. This is about all who have lyme, not just a few who don't mind or even like a cute name because it makes them feel closer to others. There are many ways to achieve that connection without causing pain to others.
When continuing use of cute nick names out of spite, that is not thinking about what is best for others. It's making them wear the same team jackets with the team letter on it, a brand not of their choosing and one that can set them up to be made less in the eyes of others elsewhere.
And when authors of professional articles start using nicknames against a group of those who have an illness, it would seem time to stop use of such nicknames and labels - of ANY nicknames or labels - and try to move forward in a better stance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
don't forget that many many doctors do not believe in lyme. I've been labelld hypochondriac, depressed, suicidal, anti-social, etc. and this by so-called professionals.
so how can people believe in lyme when we are called these names by people who should know better.
fibro is the same. we dont have flu, a bug, or anything else.
until the medical profession starts accepting it, it's an uphill battle.
I get more upset with the doctors putting false info in my records than I do over this term.
everything about lyme is upsetting.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
I say "Lyme patients" but have no problem with "Lymies" amongst "Lymies."
There are bigger fish to fry than this.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
And that is how the term was always used since it's inception many, many years ago, among and between those who have or had Lyme Disease. There's nothing wrong with that.
As already mentioned above, in the scheme of things considering all the things we "Lymies" face it's not worth getting worked up about. We certainly have bigger fish to fry, especially over in the Activism and Medical section.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ok. well. I call everyone here "lymenet" so I am sure that is acceptable. outside of this place no one is really interested in hearing about the lyme populous, so I just will call us nothing I suppose.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
posted
So here's a question -- does my username bother some of you a lot? Like I said before, I have learned to laugh at myself, and when that silly name popped into my head as I was registering here, that's what I was doing -- laughing at myself. NOT laughing about having Lyme....I dunno, it seemed to flow with "loo".
Having Lyme is hell. Bit by bit over the years, my life has been ripped away...a bit here, a bit there. I can no longer travel, and I used to be a person who loved to travel, even if it involved a long road trip.
Now I can't even make the hour drive to see my daughter and granddaughter -- haven't been able to since my granddaughter was born in '13. I have a 7 year old granddaughter who lives a bit closer and loves to come stay here, but I haven't been able to have her for months.
As for a weekend away somewhere, well, we talk about it a lot but never do it. My husband absolutely hates driving, so he's really only willing to drive one-way, and that's if it's only a two or three hour drive to wherever.
He expects me to drive the other half, but I never sleep well enough before these trips to be safe behind the wheel. And while we're away, I don't sleep, so I'm no good driving home. Not to mention how getting only a few hours of crummy sleep the entire weekend makes the whole mini "vacation" a LOT less fun. So why bother?
I can never commit to anything, because I never know how I'll feel, if I'll even be able to do whatever is was someone asked me to do. I know this makes me look like a weasel and I feel terrible about it, but I figure it's better than making promises or commitments I may well not be able to keep.
I've always been slim -- not a toothpick, but a slender hourglass shape that turned into something more like a whiskey barrel when I got hypothyroidism.
No amount or type of meds, workouts, supplements (including for adrenals), or diets has worked, even years ago when I was still able to work out 6 days a week. Hard. In fact I was doing very intense workouts up until Feb. of this year, if only 4 days a week.
I saw my doc a week ago and she said that now she knows that I have Lyme, that totally explains it because, as she said, "Your entire endocrine system has been messed up. So don't even try to lose weight, at least not for now." In other words, nothing is going to help. Lovely. Just lovely.
And on and on it goes, with more bizarre sx and pain than most people can imagine, as you all well know, because you're going through the same type of c***.
All this to say that even though I'm something of a clown, a goofball, who's number one requirement for a husband was a great sense of humor, and even though I have no problem laughing at myself, I DO NOT take Lyme itself lightly. In fact, I've seen posts where someone laughingly calls themselves a "lymebrain", and I've probably done that myself. I know I have in my life away from the computer!
But I understand the worry about the pinheads in the medical field, and the world in general, not taking Lyme seriously, and I understand why it may be irritating when "outsiders" who either don't know or don't care about Lyme and what it does to us, breezily refer to us as "Lymies". I think it's a valid concern.
So if a bunch of you are really upset by my username, I'm willing to change it. I know, no one ever pointed a finger at my username -- thank you for that, you all have been really nice, and I love this board! That's why I don't want to offend people, so if my username is a big problem, I'll change it.
If I can. Not sure how that works here, if someone even can change their name. But after reading the posts, I can see how "Lymieloo" might be like fingernails on a chalkboard, and I can already be annoying enough without adding insult to injury!
-------------------- Bless the Lord, oh my soul. -- Psalm 103 Posts: 102 | From WA | Registered: May 2015
| IP: Logged |
posted
I would not worry one bit over your user name. Just go with the flow!
It's not that easy to change it either .. so just go with it!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I totally agree. You're user name is fine and not a problem at all. I have been well for a very long time and if have a brain blip I still refer to it as "lyme brain". Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
posted
Reading through this thread, I'd like to remind everyone that Lymenet Terms and Conditions Number 4 says that everyone gets to enjoy use of the Lymenet board.
To this end, everyone has a right to express their opinion, but does not have a right to tell others how they should think, because that is infringing on others' rights to have and express their opinions!
Some people here do not like the term "Lymie" and some are ok with it. All opinions need to be free to be expressed.
In having this dialogue, people may end up convincing others that indeed, they hadn't thought about another point of view, and now they will consider it. So some people will change their minds here. And some won't, and they have that right too.
I think people on all sides of the question have made themselves clear at this point in time! We are a plural community, not a single-minded community. No one way of looking at things is going to prevail.
Please respect everyone's experience here, even as you discuss different ways of looking at things.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Well, the points about not being taken seriously by others really did get me thinking and looking at things from different point of view, and that's a good thing.
But on the othw hand Robin and Lymetoo, you've convinced me to not bother with trying to change it. Sounds like a pain anyway! Thanks for your input.
-------------------- Bless the Lord, oh my soul. -- Psalm 103 Posts: 102 | From WA | Registered: May 2015
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Your name bothers me. That is why I am calling you wild child and look the other way when your posts come up.
Kind of like a doctor once said when I asked if he took Medicare. He said he doesn't take it, he tolerates it.
Like the Confederate flag. Some see it as a hate symbol. It was never made to be one, but some still think hate when they see it and are uncomfortable.
I tend to not wave it in the face of those folks who don't like it for whatever reason, just to be respectful. I also try to not take it with me to their homes or drape it across myself when riding my horse through town at night.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
hmmmmm, there are many names on here that bother me, and not because of what they say, but the fact they are hard to type out for a reply.
I find them sort of interesting to see what people consider a lyme name and or it , to me, is a window into their current, or for some long past, relationship with lyme.
'tincup' or ' keebler' my imagination goes on its own.... tincup could actually be a person that begs on the street or maybe it is the name of the cup on a golf green, and keebler is a cookie or maybe a nick name . most people think my real name is lisa, but the site clearly states not to use our real name so I use the name I always wanted as a child.
and not to single anyone out Tincup or Keebler- but I play this game of mine with every name here. that's just the creative in me. some I don't like at all and some make me chuckle, some make me sad and some make me mad. but to quote one of the most famous lines in all of history:
"What's in a name? That which we call a rose by any other name would smell as sweet."
ha. eevrything, it seems.... everything.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
I think your name is cute. you probably are too.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
Lymieloo... Tincup is KIDDING!!! She is famous for that!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
quote:
I say "Lyme patients" but have no problem with "Lymies" amongst "Lymies."
There are bigger fish to fry than this.
Couldn't agree more.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
quote:Originally posted by Lymetoo: Lymieloo... Tincup is KIDDING!!! She is famous for that!!
Yeah, don't believe a word she says!
I always used the word "Lymies" and never thought anything of it. Now that I'm better, I don't refer to myself that way anymore, so it wasn't like I was giving myself a label that stuck.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
posted
Ohmygosh, thanks Lymetoo and Sixgoofykids! I really thought she was mad at me! Whew!
And Abxnomore, I meant to thank you as well in my last post for the encouragement. I didn't see your post, probably because hubby was on the computer so I was using my Kindle, and when the keyboard is visible it's kind of a pain to read anything above it.
As for YOU Tincup -- this is for you. And you can call me Wild Child, or whatever floats your boat, as long as it's not TOO mean! Although I'm really not so wild anymore....more like a freespirit. Maybe that should have been my username. Dang! I just remembered what my mom sometimes called me when I was little -- Loudmouth Lime! I am not kidding.
Oh well, too late now. But if any new people want that name, I'd love to give it away (thanks a lot Mom).
-------------------- Bless the Lord, oh my soul. -- Psalm 103 Posts: 102 | From WA | Registered: May 2015
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
y'all do know that the english were at one time. called lymies.
honest..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
posted
That's what someone said when I asked them if they knew anything about Lyme - "Isn't that what sailors get?" Someone ought to make a name related to that sometime...NotASailorLymie?
Lymieloo, we'll call you LooLooBelle here...
How about this name - LooLooTickToMyLoo. It's singable...
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Drats!
You guys aren't much fun you know. I really wanted her to think I ride through town at night wearing a Confederate flag draped over me and my horse, especially after calling HER a wild child.
Hey! That`s better than Six does, I mean Lady Godiva, at least I`d be wearing something!
Oh well, another day, another member to mess with. And NO chocolate for TuTu or Six. Silly girls!
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
shame on y'all. bless your hearts....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
OMGolly gee Tincup- you got me. I was really confused about that flag! haha.
o boy.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Keebler quote: "No one would call cancer patients "cancies" just because they seek out more information about their illness or form a support group."
I always HATED that "save the tatas" slogan. to me that is just wrong all around. there have been other just as tasteless and notsofunny funnies associated with cancer. and millions of people thought they were all the rage- and including cancer people.
anyway.....
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Rather doubt a twelve year old, new to all this, would want to be called "lymie" by their GP, their family members, teachers or classmates.
Would you want "lymies" bantered around congress as they decide the fate of this group. Historically, "limey's" use for sailors from England was used as INSULT.
The point here is the that the context of "lymie" is that for the wider world to think it's okay when those with lyme are insulted by the medical world, and others.
This is not about if on this board some like things cute, cutsie or light. This is the bigger picture.
The schoolgirl, the grandfather that no one believes. Think they want to be called "lymie"? This is about their dignity. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have never seen nor heard anyone proffessional call us lyme people lymies. where did this happen??? can you send me links?
or is there just a fear it will happen??
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
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). -------------
As one reads further, it's very clear that the authors do not understand lyme nor do they think well of anyone who has "chronic" lyme. Those with lyme are not being spoken here in a good way.
The point is that we - here on this board - when we perpetuate that term, we hand over permission to anyone - anywhere - anytime - to also use it and as above that is more likely to an insult and serves to infantilize those with chronic lyme. The paper above is just one example of that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
many may disagree with it but it won't change things. some people are still going to use it. you'd have to battle the entire country.
we don't have the resources to do that.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- We can act by not using the term , not perpetuating it. Don't need resources to just not be a part of it oneself, just the will to extend dignity and hope it sends a good message. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I mean, is there somewhere that actually shows a dr or other professional using that word to label us?
I am trying to figure it out if you are just upset that ANYONE uses it, or you are afraid it will become the norm for everyone to use?
I have never heard it used or seen it written , except on one blog (and here) to actually describe a large populous of lyme infected peoples.
I need proof. that's how I roll.
not saying I think it's right or wrong, just wanna know. for my own sake.
randibear, yes, and to use the parallel of blacks calling themselves the N word..... it will probably never stop in our lifetime.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
how about "LII" for lyme inflicted individual? no, then they might call us all Liiers.
or let's really get the ball rolling with bringing out the real issue of all tick disease. I think "lyme" is on the way out already, in my opinion and the new improved honor would include any and all tick diseases! right? I mean if we want to do this rigth, we ourselves have to stop painting this picture with only one single "bad guy"- lyme. when there are many other things out there from ticks.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lisa,
Four professors from these universities participated in that professional paper posted above where the term is "defined" so to speak (in their error, I do think, but still, they banter it about as it's a new word for the dictionary with the intent to infantilize & demean a population):
1. Carnegie Mellon Pittsburgh, PA 15213
2. University of Washington, Seattle, WA 98195
3. Drexel University Philadelphia, PA 19104
4. Duke University Durham, NC 27708
-- Just last week, a new blog about lyme incorporated the term as a matter of fact definition as that's what she had seen somewhere else.
I contacted the author with the request to consider how the use of that term could affect others.
Home page of Blog: Chapter 2, Part VII
"Lymie (an individual with Lyme disease)"
She replied back that, after such consideration, the term had be changed to "lyme initiate".
She posted here - in this thread - as well. and that's what brought it up to the top again. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
ok. I thought people were hearing their drs call them "lymies". so if you stopped it there hopefullly it will end the proliferation of this vexing homage.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Wink]](wink.gif)
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[puke]](graemlins/puke.gif)
![[bonk]](graemlins/bonk.gif)
![[loco]](graemlins/loco.gif)
![[rant]](graemlins/rant.gif)
![[Eek!]](eek.gif)
![[kiss]](graemlins/kissing.gif)
And you can call me Wild Child, or whatever floats your boat, as long as it's not TOO mean! Although I'm really not so wild anymore....more like a freespirit. Maybe that should have been my username. Dang! I just remembered what my mom sometimes called me when I was little -- Loudmouth Lime! I am not kidding. ![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[Razz]](tongue.gif)
Printer-friendly view of this topic