I'd Like to Learn About the Stigmas You Guys Face

[Beth from Oz]

Empty: the only alternative to a ribbon I can think of is a brooch of a ball and chain, perhaps with the words "Save M.E." written on it.

@JennyJenny yes the DNA ribbon is attractive, and it emphasises the genetic component. Though I think what we need is action across borders so that everywhere we have a single logo and a small handful of catchphrases. Your avatar you use with the visual depiction of the fain of fibro is very moving, and even opened my eyes, though I'm sick myself.

Tammy7: yes definitely a visual depiction.
With my Aussie humour here is a few jokes I've thought of:
If I looked how I feel:

• You'd think it was the zombie apocalypse
• I'd attract Vampire Hunters
• Rick Grimes would try to kill me (he's the main character from The Walking Dead)
• I'd have a job working as a zombie in horror movies
• I'd scare small children

On a more serious note I've been wanting to do a self portrait of how I feel, yes dark circles, bluish lips. I'd put the left side of my face covered in little needles. my body has constant tingles and pins and needles, worse on the left hand side. When I'm really tired some of the needles feel hot and others cold. No M.S. or any explanation. Sometimes I try explaining my weakness as telling people to think of me as an 85 year old woman who's had a lot of plastic surgery. An alternative I'd thought of would be to do some special effects make up on my face directly to look as bad as I feel then film the reactions I get, but I wouldn't want to terrify any children.

ScottTriGuy: I absolutely agree. I saw a page on Facebook of pictures that people had taken of the things they used to do but can't anymore, like surfboards and sewing machines. Definitely need to emphasise our before and after selves, maybe with tammy7's visual of how we feel now. We need something that says " who would ever want to give up that great life for being stuck in bed?

 

[Janice]

Hi John,
I'm so grateful for your interest in doing this and for your advertising and marketing skills! Whitney has a good friend who believes

I saw this thread and the first replies four days ago. I live rural and have sporadic Internet access so I worked on a comment and waited for the Broadband to clear. I was stunned today to find the large number of responses and varied perspectives!

Given I put energy into my reply I'm going to share it though there is repetition of previous responses.

I am one of the walking wounded – I am able to be active about 4 hours a day (including daily living skills and personal hygiene) and can leave the house 3-4 days a week if needed but cannot do that every week. Problem with that level of “ability” is that I look “normal” to others so disbelief of my reality is common as the pacing, rest and recovery work required for outside activity is not visible to outsiders.

The stigmas – the negative and unfair beliefs I've encountered – include:

• Being thought of as malingering. Like many with CFS I have medication sensitivities so my hesitancy or sometimes refusal to take pharmaceuticals adds to this judgement with providers.
• Minimizing – happens with statements like “I'm tired too” or, and this is a direct quote from a dentist, “I think 90% of Americans are tired”.
• Fixing – some conventional and alternative professionals have a theory of what is needed that does not seem to be grounded in evidence of positive outcomes (or has limited outcomes with a subset). For example, deconditioning thus graded exercise,“You have the community virus. You just need to do step aerobics”, “you probably have sleep apnea and need a CPAP”, or “there's just one small area of your brain that we need to fix so here's a prescription for”. With friends/acquaintances there are comments like “I get energized from doing something fun or creative” or “I was tired when I was depressed”.

“What did you have to go through to get diagnosed?”
It took 15 years to get the CFS diagnosis (1990 to 2005). I saw alternative and conventional healthcare providers. Alternatives' testing showed “disfunction” but treatments plans were unclear, treatment costs were prohibitive, and there was little if any noticeable improvement with several months of compliance. Conventional testing was “normal” except for thyroid though thyroid medication did not produce noticeable improvement. Low normal or unusual test results are dismissed as not being significant, e.g. Epstein Barr results showing a past and recent infection though I've never had a diagnosis of Mono or EB.

“Have the stigmas gotten better throughout the years or has it stayed about the same?”
I think it's about the same. In the early 90's there was some awareness due to the Incline Village “outbreak” in NV. Currently there is some awareness and less stigma among the few providers who study relevant literature or, in one case, a recent medical school graduate from a program that emphasized compassion and who had a family member with ME/CFS – she believed! There are also lists available on the internet of “good doctors” for ME/CFS or Fibromyalgia though I saw an MD from a Fibromyalgia list and was treated rudely with impatience and disrespect.

On the emotional aspects, I agree John that not being believed is a common experience. I like your tag lines of “If you believe” and “I believe”. I think that “I get it” is currently used in a derogatory or impatient way and is sometimes used in an abrupt manner to stop further conversation. There have been other suggestions on the thread the last couple of days so perhaps something different will be identified.

Tapping into what to call this illness is a huge trigger issue in the community, exemplified by the response to SEID. Seems impossible to find consensus though I am concerned progress will not occur if we don't find agreement. I could accept ME/CFS for the sake of moving forward. I could also agree with SEID in that it links to what I see as validation and literature/research review presented in the IOM Report. I also like Pold's suggestion:

We could talk about the poorly understood neuroimmune diseases behind the name ME/CFS/SEID. We know there are immune abnormalities, and we know the nervous system is affected in various ways.​

You posted a list of the common themes that emerged in the initial posts. I certainly relate to alienation, feeling slighted by the system, a lack of empathy, and anger! Helplessness and self loathing not so much. Predominant emotions I've had with ME/CFS are self-doubt and grief/loss. The self-doubt was early on when I still looked to professionals to know best. There is a lot of grief and loss with this disease: loss of career and financial security, loss of ability to interact with friends and family (even phone calls to grandchildren are difficult), loss of a sense of contribution and purpose (takes work to redefine those in these new circumstances).

A tool that has helped me deal with difficult feelings is Marshall Rosenberg's Nonviolent Communication (NVC). Perhaps the NVC perspective might be useful in formulating the marketing content. NVC views certain feelings as a sign of unmet needs. For example, we might feel hopeless because our needs for consideration, acknowledgement, and/or to be seen for who we are are not being met by professionals, NIH/CDC, friends and family, etc. (A Feelings list can be found at http://www.cnvc.org/Training/feelings-inventory.) In addition, this disease strips away the ability to meet needs like autonomy, contribution, and perhaps meaning. (A needs list can be found at http://www.cnvc.org/Training/needs-inventory.) The emotions can be worked through and needs can be met in new ways though accomplishing those things takes effort and of course physical, cognitive, and emotional efforts can trigger PEM so it's a nasty double bind!

Sure would be nice to come up with the ME/CFS equivalent of that Ice Bucket Challenge which increased awareness and research dollars for ALS; or get the word out with something like the FB page “Humans of New York”. I love the idea of the bars above our heads to illustrate energy and may also illustrate the difficulty recharging! And a final thought: I use “stamina” rather than fatigue when I attempt to explain my reality (e.g. lack of stamina or unsustainable stamina).

Thank you again for your interest John and I hope the diverse information doesn't become overwhelming and discouraging!!

 

[Grace2U]

Thanks Soti.
I was wondering if that one reason why people turn away from us, the thought of not being in control of ones own life can be terrifying. maybe we need to promote how much Pwcfs have contributed (Laura Hillenbrand for example) or did contribute before being sick, and how much they would like to contribute given better health. That may counter the idea that we aren't very American/Australian etc.
It's definitely a cultural thing.
The western idea of hard work and overcoming adversity is a good one, but shouldn't be used as an excuse to denigrate others who are less able. Though I suppose people with visible illnesses once had the same prejudices to overcome as we do now. We need to show ourselves as those fighting against adversity, then people might want to fight along with us.

I too love your thoughts about conveying the strength it takes for one to live with this "life challenge".... How do we combine that marketing approach with the "battery usage" visual? I credit myself as an "out of the box" thinker, but I never gave thought to your idea of conveying exceptional strength to accomplishing what others may surmise as menial tasks Those are my 2 favorites; the Strength, and a visual picture of measuring it (Batteries over head)!

PS: My ACD "Jeb" aka "Pinochio", believes he's a real boy. He has an understanding of 30+ words/phrases, takes 1st place in "hide and seek" with my grandchildren......
-enjoys year round Easter-ball hunt
-finds "Bella" (his rescued ACD sis who will intentionally get in my bedroom closet until he pushes open the door)
-chimes in only at Happy Birthday
-scrambles to the upstairs window when given a heads up that "Daddy" on his way (recognizes the vehicle)
-brings me whatever piece of unfolded laundry he's gotten off the sofa (in hopes that I'll let him have a dish cloth)
-uses his eyes to "show me" what he wants
-presses between me and my iPad (lifeline) to snuggle
-and, my favorite, makes "whisper" sounds and gently nudges me while lying here to get my undevoted attention. He is learning "which of 3 moving cups is the ball under" now. To think how he demonstrates his ability with very little formal education! Hope you don't mind me sharing......you know how smart this breed is since you've had CINDY If I get to a point where I can....I'd like to make sure everyone who is mostly bed bound has 2 things...an iPad, and the companion pet of their choice .

 

[Inquisitive_Walt]

My wife took her life February 22, 2015, after having ME/cfs for 20 years. She gave it to me in 2009. She blogged about the stigma and her anger. I've experienced little change in attitudes.
http://chardalescuriousjourney.blogspot.com/2014/02/mecfids-scam-of-day-call-bs-on-lazy.html?m=1

 

[Luke]

My wife took her life February 22, 2015, after having ME/cfs for 20 years. She gave it to me in 2009. She blogged about the stigma and her anger. I've experienced little change in attitudes.
http://chardalescuriousjourney.blogspot.com/2014/02/mecfids-scam-of-day-call-bs-on-lazy.html?m=1

I read your late wife's blog post. I am a father of a 3 and 5 year old and especially relate to the part about the lack of understanding from inlaws and family. For me it was my wife and inlaws. For the 4 years of my ex-marriage it was the same thing... my ability as a father questioned by my wife and in-laws (luckily for me not my own family though, although im sure some do behind closed doors--but not my mum or dad or siblings at least) due to my "strange" behavior.... because after all....how bad is me/cfs. My father-in-law said explicitly to my face... it's in your head. The worst part is i want nothing but to be there for my kids --it is hard enough being in severe muscle pain/fatigue/severely light sensitive ... every day... and being bedridden weeks on end... spending every day in a chair... etc.... but it's mental torture knowing your kids need you but you cannot be there for them and are missing key experiences/events/date of their lives... or when you are there not being fully "there" or able to truly enjoy that moment (i.e. the birth of both my children) due to your symptoms. Hearing others are questioning your love for them/being unsupportive/critical of you as a dad, grandma, whatever ... on top of the physical suffering daily .... really is enough to get you so down you end it all. Me/CFS/Fibro/etc are... and i say this in all seriousness with no shyness... the worst diseases/disease on earth... because no other diseases are so terribly painful to endue for such an extended time... while not being believed/validation for your suffering.

Luckily the belief part has changed and is shifting. It's no longer a question of belief after the IOM report and the current shift. But the general public and even doctors just aren't aware of this change in the narrative of this illness... now known as a disease officially.

Your wife is an example of why asking people to merely believe is not the approach... it simply doesn't work... her own family would not believe for goodness' sake.

The stigma of me/cfs is DEEPLY entrenched over 30-40 years.... if we are going to change it at all.... we need to come at it from another angle... a marketing effort that merely tells them more of the same "we're sick, we have cfs, it's debilitating, this is what my day is like living with it... believe" etc etc is going to do absolutely NOTHING in my opinion (other than waste a great opportunity--maybe even set us back if the campaign is done poorly... this is why i am so interested in this thread).

Your wife's experience in her blog post before she took her life.... is proof of the fact asking for belief does nothing (nor would a catchy tag line in a commercial). Her very own family would not believe when asked to. Clearly this is not an effective approach. If we want awareness of me/cfs alone... and for people to think more of the same... i.e. "we don't believe you" then run some campaign asking them to believe. They will certainly be aware of me/cfs... but their reaction will be disbelief as it always has been.. i.e. nothing accomplished... no shift in their perception of our disease. The stigma of me/cfs is simply to entrenched and they wont believe unless given reasons/evidence to. And we now have those reasons. People think it isn't real, or isn't that bad, or is in the mind, or we are lazy, etc. These ARE VERY DEEPLY ENTRENCHED STIGMAS. A marketing campaign NEEDS TO CONFRONT these ideas HEAD-ON... and answer/tackle these entrenched beliefs one-by-one... if it has any chance at success. Obviously this would be done properly in an effective fashion.

Things have changed in 2015. The excuses have run out. There is a shift in perception from the top--the scientists, Institute of Medicine, etc--concerning me/cfs. But this shift -- that's happened at the top IOM, scientists- needs to be communicated down to the general public so their perception also shifts and catches up with the state of things.

This is why, as i wrote in my other reply, the marketing campaign needs to educate people of this shift, merely asking them to believe doesn't work. It will not overcome the stigma... and therefore they will continue not to believe us as always. Tackle the stigmas head on. Give people a reason why they should believe... give them the truth... i.e. top scientist/noble laureates working on me/cfs -- the Institute of Medicine (the top institute for health in America) says it's a real, debilitating physical disease and so forth..... we are seeking funds to tackle this disease (please donate) etc etc. EDUCATION of this shift in the narrative of our disease is what the public need to know....

I really mean we need to tackle the stigma head-on (and i think this is the only way to achieve success)....For example, in the "brochure" for the campaign i would address the stimga head on, for example:

Headline: A Real Disease
"For years there has been a stigma attached to the the illness ME/CFS... people think X, Y and Z about this ilness. In 2015 the Institute of Medicine published a report and put this to rest stating that "ME/CFS is a complex, debilitating, severe disease". Etc, etc...

Only by addressing the public's outdated perceptions head-on, and in fact using terms like "out dated", will we stand a chance of going forward and changing peoples minds. They need to be brought up to speed. Educated. They need to be made aware that their ideas about me/cfs ARE outdated... and here why. Tackle this stigma head on. Change their perception of the illness! And I'm sure this is what Jon Kim has in mind.

I honestly have not researched your background Jon Kim for all i know you might be CEO of the Omnicom Group or a one man shop--but I hope whatever your power is to help us that our insights are helpful and useful.

p.s. forgive all the typos and paragraphs that are incoherent, my hands are already painful from typing this much and mind too fatigued, going back over what i wrote to catch all the typos is too much for me. hope my ideas were clear enough in the first draft

 

[Karena]

Good post! I like the idea of a marketing effort that focuses on scientists and doctors who study this disease and treat people suffering from it. When we describe it ourselves,we may come across as complainers exaggerating our symptoms.

There must be some psychological reason people have so much trouble understanding this illness. Maybe they don't want to think this could hit them out of the blue (or a bout of pneumonia, as it did with me). Maybe they don't have to be as sympathetic or supportive if my problems are my fault or just "in my head."

To be honest, I would rather see nothing than a marketing campaign that takes the wrong approach. It's too easy to reinforce stigmas and make us a target of derision. Over the years, I've heard a lot of comedians make fun of chronic fatigue syndrome. Anyone else remember the old commercial with the Keebler elves talking about cookie fatigue syndrome?

I know marketing and publicity are supposed to touch the public's emotions. But in our case, I think it's more important to focus on the very real evidence that something is wrong with us and no one is doing enough to help us.

 

[kevin Feldman]

Saying it like it is Snow Leopard

• Dating? How do you date with this disease (particularly when you're not really "up" to it in so many ways).
• Finances - I'm lucky - I'll should get something from my father at some point. I hope to God it's enough. I don't know if it will be.... Otherwise I will be dependent at some point on the very small amount that Social Security will send my way - given low income and sometimes non-existent income for decades.
• Friends - on the internet only really....

Why don''t we have a sub-forum section about suicide and assisted suicide laws..Ive been very intetrested in the subject matter lately http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html

 

[Snookum96]

Why don''t we have a sub-forum section about suicide and assisted suicide laws..Ive been very intetrested in the subject matter lately http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html

I've wondered about that too. People seem to not like to talk about it. I am always open about my opinion about it but I find that many, especially healthy people, don't want to talk about it or I scare them.

 

[kevin Feldman]

I've wondered about that too. People seem to not like to talk about it. I am always open about my opinion about it but I find that many, especially healthy people, don't want to talk about it or I scare them.

The lawmakers around the globe are grappling with the issue. There are viewpoints on both sides , The medical system is not equipped to deal with it . I personally think there are times when iit is better for loved ones to be brougtt into the mattetr before the event which would take away the suprise-shock so ones at least have a chance to "buy in" and have a chance for final expressions/connections. That certainly would ease the pain of loved ones post event. There are views on both sides , NO is based on religious tenets, Yes is based on mercy and the ultimate inalienable right ( IMHO). If someone is terminal and has about a week to live yet is in excrucuating pain...what purpose does that week serve? I have only had this 17 months but on a slippery sliope to hell so I can envision a time and place where my minimum standard of existence is not met. To each his own. I would rather live a year , a week or even a day as a Lion then a lifetime as a sheep. stay well all

 

[kevin Feldman]

The lawmakers around the globe are grappling with the issue. There are viewpoints on both sides , The medical system is not equipped to deal with it . I personally think there are times when iit is better for loved ones to be brougtt into the mattetr before the event which would take away the suprise-shock so ones at least have a chance to "buy in" and have a chance for final expressions/connections. That certainly would ease the pain of loved ones post event. There are views on both sides , NO is based on religious tenets, Yes is based on mercy and the ultimate inalienable right ( IMHO). If someone is terminal and has about a week to live yet is in excrucuating pain...what purpose does that week serve? I have only had this 17 months but on a slippery sliope to hell so I can envision a time and place where my minimum standard of existence is not met. To each his own. I would rather live a year , a week or even a day as a Lion then a lifetime as a sheep. stay well all

There is a good example -http://www.theguardian.com/lifeandstyle/2008/aug/18/familyandrelationships.healthandwellbeing

 

[Snookum96]

The lawmakers around the globe are grappling with the issue. There are viewpoints on both sides , The medical system is not equipped to deal with it . I personally think there are times when iit is better for loved ones to be brougtt into the mattetr before the event which would take away the suprise-shock so ones at least have a chance to "buy in" and have a chance for final expressions/connections. That certainly would ease the pain of loved ones post event. There are views on both sides , NO is based on religious tenets, Yes is based on mercy and the ultimate inalienable right ( IMHO). If someone is terminal and has about a week to live yet is in excrucuating pain...what purpose does that week serve? I have only had this 17 months but on a slippery sliope to hell so I can envision a time and place where my minimum standard of existence is not met. To each his own. I would rather live a year , a week or even a day as a Lion then a lifetime as a sheep. stay well all

I feel exactly the same way. I had a really bad summer and frequently wished I could be euthanized. I've been a bit better lately but every time I'm reminded of who I used to be, like seeing someone outside running on a nice day, I wonder why people are forced to live if they don't want to. Im not depressed, which is what everyone thinks if someone wishes to die, but it's no fun living in a cage with your hands tied behind your back. We all know what that feels like.
I think it would be impossible to regulate, and MECFS would never make the cut if the government decided to legislate it.