Summary:
Due to widely different personal meanings,
verb and de-verbal noun of term “suffer” are
at best useless in communication, and,
at worst, they have become divisive words
in both the PWD and assistance communities.

Why is this?

…  Part 1 of this subject is here: https://truthfulkindness.com/2015/12/01/drt-yield-communication-priorities-pwd-suffering-terminology/ (with comments). Part 2 developed from conversations regarding Part 1, and is here:  https://truthfulkindness.com/2015/12/03/dementia-suffering-terminology-part-2/ , along with links to the language guidelines themselves.

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Tru here.  Quietly simmering resentment is not productive to goals for co-workers in efforts for dementia awareness and inclusion of PWD voice (voice of Persons With Dementia).  I guess you could say this series on “SUFFERING” term is a peacekeeping effort.  Since I am personally very uncomfortable with conflict, this is an additional installment of Part 3 for this subject.  Clarification of subject and definition did not work, so still hoping for some unifying constructive effort that could possibly be agreed upon, at least by most of the Persons With Dementia (PWD) that I know.   Not only do I dislike participating in competitive sports; even board games feel like conflict for me … so being “in the middle” for this debate is not only uncomfortable but actually unhealthy for my stress level, thus I have delayed two months for finalizing and publishing this installment of subject.

Suspect much “stigma” is formed from misunderstandings between the involved parties, and I have become very concerned at the mis-understandings for definition of verb “suffer” in regard to dementia and mis-understandings with grammar rules, for use of the DeVerbal Noun, “sufferer”.  Additionally, suggested Language Guidelines themselves are often mis-interpreted (by both Persons With Dementia and Persons withOut Dementia) as implying that there is generally no “suffering” with dementia, and also mis-interpreted as representing the general PWD opinion.

Very few of the Persons With Dementia (PWD) with whom I have personally spoken are offended by either verb “suffer” or deverbal noun, “suffer-er”, in connection with the stigma of profiling the dementia diagnosis as instantly totally debilitating and characterized by life-style of trauma.  The largest percentage of my friends are not offended by this verb or noun.

So a few are offended on the one side.  However, I have spoken with at least an equal number of PWD who are deeply OFFENDED by what they perceive the Language Guidelines to be saying — and who consider the language guidelines as source of social stigma to those PWD who choose to make their pain and discomfort public (in my perception mostly because so much of the population without dementia symptoms is also mis-interpreting the guidelines to imply that there is generally no “suffering” with dementia).

These folks are usually less militant than my few friends who are proposing the guidelines, but these PWD feel bullied and pushed to the wayside by their fellow PWD, because there is a popular misconception that these guidelines somehow speak as representation for the majority of Persons With Dementia (PWD).

So I address this subject again now, in search of something constructive toward remedy, because I think this is becoming progressively more damaging to a substantial portion of PWD, in their willingness to engage in peer contact and share their lived experience.

Like I said before, my introduction to this restriction was shortly after my tentative “dementia” diagnosis in 2012.  I had been admonished (maybe 2013 ?) by a couple folks for using the term “suffer” in connection with my own symptoms, along with correcting me for inappropriate use of the term “patient”. My subsequent research led to the language guidelines by Alz Australia.

In my current research on this subject, I see two major problems in the polarization of PWD opinions on language guidelines, and both have to do with language itself: definition, and forms of grammar.  There are drastically different meanings of verb “suffer” and de-verbal noun “sufferer” amongst PWD.

Each understanding for definition of term “suffer”
pre-disposes to getting offended in one direction or the other
of the proposals for language guidelines on term “sufferer”.

 

***   …   ***   …   ***  DEFINITION  ***   …   ***   …   ***

“Both verbal and non-verbal language are very subjective means of communication, because words and behaviors mean different things to different people – but we must continue to try because communication is necessary for any relationship.” -Truthful L. Kindness 2016 Feb 02.

I don’t think I have ever called someone other than myself a “sufferer”.  Until the recent uproar about the language guidelines proposed by several small groups, I considered the “sufferer” issue a somewhat minor difference of opinion.  But now I am beginning to conclude that “suffer” is a useless term in communication BECAUSE the term often carries a large emotional aura but does not communicate at all the same meanings amongst groups of people.  Lack of shared meaning for vocabulary facilitates mis-understandings instead of unity.

• At least one Person With Dementia (PWD) has “suffering” definition as, “If I can be happy then I am not suffering”.
• … But that is a far different meaning than a PWD who (quite correctly from the dictionary) includes in their definition any loss of ability – quite apart from any emotional response to that loss.  This PWD figures if there is truly no “suffering” then each of us retains ability to finish each one of our prior tasks (of life or occupation) with the SAME quality, quantity, and timing in which we had been able to complete them before dementia symptoms began.  Abilities with regard to senses (sound dis-orientation, space and time disorientation) are of course included in those abilities along with all executive thinking.  According to this particular (dictionary) definition of “suffer”, most people who have any dementia symptoms would fit in the category of “suffer”, regardless of emotional context, and to think otherwise is pretending or divorced from reality (or gross mis-diagnosis with no dementia symptoms at all).
•  …  Then, at another far other end of the spectrum are those who feel “suffer” is limited to experience of intense physical pain,
•  … or those who consider “suffer” as limited to only an emotional REACTION (to the symptom, decreasing ability, or event of discomfort or pain).

These varied definitions above are all from my PWD friends during past 6 months.

The problem is that no one stops to discuss their particular definition of the word; they just get emotional (imagine that for someone with dementia symptoms LOL).  So there are gigantic mis-understandings because we assume we are communicating similar meaning with the word “suffer” — but it is an ILLUSION of communication because we are not talking about the same concepts !  We are comparing apples to oranges, thinking we are all talking about the same fruit.

An illustration might be reactions to sentence, “My husband is critical to this blog.”  Does that mean he is indispensable to the blog … or giving negative feedback?  The context of conversation or reader’s knowledge of our relationship would be necessary in order to gather hints for the opposite meanings of the word.  … but each reader’s personality and experiences would lend itself to one meaning or the other.

The term “suffer” has become so muddy as to be useless, due to variety of interpretation.

Even if we could agree on a meaning between our small individual groupings of a hundred here and 50 there, 200 somewhere else, or an additional 30 … that is such a small portion of the PWD population as to be negligible for representation.  And all new PWD are expected to conform to OUR newer definition of the word?  Won’t work.  Besides that, even if we could agree on what we wanted the word “suffer” to mean, if it was different from our original concept of the word, we ourselves would keep forgetting the new, agreed-upon definition by the end of the paragraph !!

Lack of shared meaning for vocabulary facilitates mis-understandings instead of promoting unity.

 

IF anyone chooses to use a variation of the word “suffer” it would be helpful to clarify which particular definition is being used, both before and after use of the term.

To “suffer” as transitive verb = used WITH object ((such as term “dementia”)):  1. to undergo, be subjected to, or endure (… anything unpleasant);  2. to undergo or experience (any action, process, or condition);  3. to tolerate or allow (per dictionary.com).

To “suffer” as intransitive verb = used without object:  1. to undergo or feel pain or distress;  2. to sustain injury, disadvantage, or loss;  3. to undergo a penalty;  4. to endure pain, disability, death, etc patiently or willingly (per dictionary.com).

To suffer something is, etymologically, to “hold or sustain it from underneath,” from Latin sufferre, “sustain.”

According to Merriam-Webster, the origin of “suffer” is: Middle English suffren, from Anglo-French suffrir, from Vulgar Latin *sufferire, from Latin sufferre, from sub- up + ferre to bear  

***   …   ***   …   ***

***   …   ***   …   ***  GRAMMAR/FORM: De-Verbal Noun  ***   …   ***   …   ***

Nouns describing myself (most of which are also “DeVerbal Nouns”) demonstrating variety of time connotation:

• I am a meat-eater (frequent basis)
•  I am a plant-eater (frequent basis).
•  I am a walker (frequent basis).
• I am a writer (frequent basis).
•  I am a ballroom dancer (infrequent basis).
•  I am a sewer and a singer (infrequent basis).
•  I am a researcher (check out my “Ancestry” page).
•  I am a house-designer (TWICE: designed and submitted sets of blueprints for two different two-story homes)
• Politically, I am a very tolerant conservative (life-style).
•  Typologically, I am a “Thinker” (One reason INTPs have that nickname is because that is often where we gain a large portion of self-value, and another reason is that it is the route we prefer to make decisions from).
•  Medically, I am a “sufferer” for several conditions. Some have a lot of physical pain, and some have none. Some have a lot of emotional pain, and some have none. So … I have been a Lyme sufferer (but am said to no longer have the condition – so I am no longer a “Lyme sufferer” even tho I have lasting painful results from it). I have been a Babesia sufferer (but am said to no longer have the condition). I am currently an osteoporosis sufferer and have pain from the pinched nerves almost every day. I am a hypoglycemia sufferer, and fibromyalgia sufferer. … along with plenty of other things INCLUDING dys-abling dementia symptoms.

Some people choose to define me by one of these characteristics. If being vegetarian is very important to them they may not get past the fact that I eat meat; that becomes my defining characteristic in our relationship.  If they are strongly liberal they may not get past fact that I am politically conservative (a political minority in my group of friends), or maybe my theology (which is why I did not include it in this list, LOL).   I choose what I make public about myself, but I have no control over the “defining” filters that others hold. These are words to clarify who I am and what I experience, hoping that the reader will understand these words with similar definition that I hold.  Again …  Lack of shared meaning for vocabulary facilitates mis-understandings instead of promoting unity.

***   …   ***   …   ***

I tried to find the rules on length of time or priority needed in order to characterize DeVerbal Nouns, and especially “sufferer“, but was completely unsuccessful.  I believe that the length of time is very ambiguous; it can be limited to a moment – or a full life-style characterization.  Sometimes this can be clarified by context and sometimes it remains ambiguous.  The “batter” during Friday’s amateur ballgame was limited to some number of minutes during that particular game, but characterizing someone as “Barry Pankhurst, the Baker”, specifies that baking was one of Barry’s primary occupations before retirement, and probably integral to his life-style.  **

When it comes to DeVerbal Noun, “sufferer”, attributed to Persons With Dementia (PWD), the length of time or life-style question is another huge source of mis-understanding — creating at LEAST four different perceptions of the word:

1. limited (newer) definition of suffer (usually extreme pain of some type) x time connotation (of constant or life-style) = feel “sufferer” means a person who constantly experiences some type of pain (physical emotional, social etc), or who loses all other defining characteristics.
2. limited (newer) definition of suffer (usually extreme pain of some type) x time connotation (of momentary) = feel “sufferer” means a person who experiences some type of pain at times.
3. larger (older) definition of suffer (including medical condition or limitation of some types of abilities) x time connotation (of constant or life-style) = feel “sufferer” means someone who has at least one long-term dys-Ability or long-term illness which may or may not carry pain, or could instead have major problems of many other types, one or more of which may involve discomfort or pain.
4. larger (older) definition of suffer (including medical condition or limitation of some types of abilities) x time connotation (of momentary) = feel “sufferer” means someone who has at least moments of short-term dys-Ability or illness which may or may not carry pain, or could instead have major problems of many other types, one or more of which may involve discomfort or pain.

Lack of shared meaning for vocabulary facilitates mis-understandings instead of promoting unity.

I am still offended by plenty of terms, but realize that most often it is due to my own narrow definition of those terms; hard time getting past some aspects for the term “care”; In my mind “care” is still limited to consideration and kindness.  To have someone else identified as my “care-giver” implies to me that I am no longer able to give consideration and kindness.  Even tho I am not alone in this mis-perception, I need to realize that it is my own problem – due to my own narrow definition of the term.  Strongly objected to term “victim” in this context — until I looked it up in dictionary.  But again I had a narrowed definition which was corrected by the dictionary; second point in Merriam-Webster is “an individual injured or killed (as by disease, violence, or disaster)”.  I suspect a dementia brain is an injured brain.  oh well.  I feel that it is my problem to deal with my own misperceptions of language, not all of humanity’s responsibility to comply with my own narrow definitions.  I also have problems with becoming a “consumer” and a “user” but recognize that when used as transitive verb (with subject included) they can actually be quite appropriate terms.  It is much easier for me to get past the sting tho if grammatical subject is so close as to be hyphenated with the verbs (ie service-user or service-consumer).

When I have time to babysit media-watch, I address issues that I consider of much more impact than term “sufferer” (like my opposition to term “fading”).

I still think term “sufferer” gives teaching opportunity to say;
“Did you realize this term has such a wide variety of usage meaning that it is currently polarizing the PWD and ‘care’ sector?”

 

With this change in perspective, and realizing that new requirements are very difficult for us, I suggest that when anyone (including PWD) use the term “suffer” (ie “I do suffer” or “I do not suffer”) that they include their particular definition of the term.  As an example, I wrote on January 30, 2015: ”  In my terminology “sufferer” does not necessarily mean a lifestyle. We are ALL sufferers; ones who experience pain and unpleasantness in different areas of life.  Actually I think I am not the only disabled person in my family; we are ALL disabled.  It is just some folks do not identify with their own disabilities in order to be looking for compensation strategies.  Their disabilities are invisible and unaddressed – even to themselves.  …  ALL of us are sufferers, but some people do not recognize and deal with their suffering – I think to their own detriment.  But I also think we are ALL enjoyers -ones who experience joy.  And denial of our suffering also seems to get in the way of recognition for those joyous moments. I personally think it is a matter of BALANCE.  What do I choose to focus on and identify as my lifestyle?”

 

“Lack of shared meaning for vocabulary
facilitates mis-understandings
instead of promoting unity.”
— Truthful L. Kindness 2015 Dec 07

Therefore my conclusion:
Due to widely different personal meanings,
verb and de-verbal noun of term “suffer” are
at best useless in communication, and,
at worst, they have become divisive words
in both the PWD and assistance communities.

Before someone comments to remind me; Yes, I realize that there is disagreement among my medical team on whether my current diagnosis should be termed Mild Cognitive Impairment or “Dementia”, and thus I have no authority for speaking on this subject as a PWD myself, — but no one is obligated to listen or take action on suggestions either.  I am just giving an opinion.

Truthful Kindness
…  Part 1 of this subject:

https://truthfulkindness.com/2015/12/01/drt-yield-communication-priorities-pwd-suffering-terminology/ (with comments);

Part 2 is at https://truthfulkindness.com/2015/12/03/dementia-suffering-terminology-part-2/ .

Other LINKS on this issue (listed Alphabetically):

PWD George Huba at http://hubaisms.com/2014/02/26/if-you-have-a-rareorphan-disease-and-want-socialpoliticalpharmaceutical-action/ & http://hubaisms.com/2015/12/08/i-refuse-to-suffer-with-dementia/;

PWD Faith Riverstone 1) https://stilllifewithdementia.wordpress.com/2015/12/01/calling-us-sufferers-is-just-wrong-on-so-many-levels/ & 2) https://stilllifewithdementia.wordpress.com/2015/12/03/the-issue-with-calling-us-sufferers-defined/

PWD Harry Urban at https://truthfulkindness.com/index-persons-with-dementia-pwd/harry-urban/advocacy-pt-prspectv-2015-nov-dec/ ;

PWD Kate Swaffer, (DAI etc) http://kateswaffer.com/2014/03/03/empowering-people-with-dementia/;  http://kateswaffer.com/2014/05/09/i-repeat-please-dont-call-us-sufferers/

Norman McNamara (Purple Angels) at http://tdaa.co.uk/suffering-or-living-with-dementia-you-decide-plz-rt/;

Paul Hitchmough at http://www.onourradar.org/dementia/2015/08/19/people-cant-seem-to-say-what-they-think;

Rick Phelps (Memory People) at http://phelps2645.blogspot.com/2016/01/dementia-patients-suffer-from-sleep.html ;

* Admin issues: SHARE dementia awareness thru buttons below. Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If interested in receiving notice of future blog postings, subscriptions are available through a “follow” button in the upper left corner (MS Explorer) or lower right (Safari, Mozilla Firefox and Chrome). If there is an advertisement below, I have no control over what is shown. My own full legal name is Truthful Loving Kindness. My current diagnosis is Mild Cognitive Impairment. Text for this page took 22 hrs.  Copyright 2016-02/01.  Graphic 2hrs & then was replaced for total 3hrs.

** Began this blog entry December 7, 2015, which was before by friend Barry died (but obviously he was on my mind).

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