Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
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
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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 ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lauralyme
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Member # 15021
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
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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: 96239 | From Texas | Registered: Feb 2001
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beaches
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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: 96239 | From Texas | Registered: Feb 2001
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beaches
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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
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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
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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
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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: 13171 | From San Francisco | Registered: May 2006
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beaches
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posted
Keebler,
EXACTLY!
Posts: 1885 | From here | Registered: Jul 2012
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desertwind
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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
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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: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
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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
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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.
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
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Keebler
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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
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beaches
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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
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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
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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
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GretaM
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Member # 40917
posted
Legal Medical Negligence and Intended Medical Neglect
Pandemic
Life Threatening Infection
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Keebler
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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: 13171 | From San Francisco | Registered: May 2006
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lax mom
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posted
If it were called a pandemic, Lyme would get the respect and fear it deserves.
randibear
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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
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randibear
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posted
One of them dying.....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Keebler
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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 -
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LisaK
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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: 3592 | From Eastern USA | Registered: Jul 2013
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Keebler
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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
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Ann-OH
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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
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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
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randibear
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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
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Keebler
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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
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randibear
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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
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Keebler
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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
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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: 3592 | From Eastern USA | Registered: Jul 2013
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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
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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
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