Day: May 2, 2012

#HAchat Recap: Health Activist Mythbusters

May is all about setting the record straight.  Across conditions there are countless myths, misconceptions, and stigma.  Where do these myths come from you might ask?  In the end they stem from a lack of education, and the fact that sometimes it’s easier to accept the myth then look for the real answer, or try to understand the truth or the science behind a condition.  Yesterday’s chat focused on the first step to combatting myths both on and offline: defining and recognizing these myths and their origins.


What is a myth?

A myth is a popular un-truth.   Something commonly believed as true but in actuality is false.  The problem with myths is that they aren’t easy to correct. @enBloomMedia: T1. Myths R steeped in misconceptions; once learned, they are very hard to unlearn even w/ proof. #HAchat #HAchat


Where do myths come from and how do they spread?

Myths essentially stem from lack of education and misinformation. Remember the telephone game?  You whisper a message in someone’s ear, and then they whisper it to someone else, and then to someone else, and by the time you get to the last person it’s a completely different message! Information around health issues is no different, but there is an added layer of complexity around why health myths gain so much traction.  One reason is that people are scared of illness. People want to believe that illness, no matter its form, cannot happen to them, and are willing to believe myths that exempt them from risk.  Take HIV for example.  Back when HIV was just beginning to impact the United States, there were rumors flying from all sides about the origins of the disease, but gays and Haitians took most of the blame.  Many still label HIV as a “gay disease,” and Haiti still suffers from the economic blow that accompanied the end of US tourism on the island.   People wanted to believe that only gay men could get HIV so that they themselves didn’t feel that they were at risk, and so they didn’t have to change their behavior.

enBloomMedia Sadly, myths are used to comfort & give people the perception they have more self-determination than they really do #HAchat.

jasonhweiner: Myths spread because often times the truth is harder to explain #HAchat

The media is also a huge perpetuator of myths.  Myths are often more “interesting” than the truth, and the sensationalizing of myths makes them spread more quickly.  This doesn’t just happen on the news, but on popular TV shows as well.

k8lin A big reason for organ donation myths is that donation is portrayed incorrectly on television and in popular media #hachat

wegohealth: Myths spread because they are often “scary” and buzz-worthy. They are perpetuated by WOM & “the media.”#HAchat

MakeThisLookAwe Television spreads a LOT of misinformation #HAchat -3:48 PM May 1st, 2012

TiffanyAndLupus : Myths can spread due to misinformed media. Like the TV show #House which is known for saying, “It’s not lupus,its never #lupus.” #hachat

In some ways, even patients can perpetuate myths.  TiffanyAndLupus: Myths can spread like wildfire due to misinformation based on hearsay. Theyre spread by all; patients & healthcare professionals #hachat.  Everyone is looking for a diagnosis, to put a name to their symptoms that they can be treated and so that you can move on.  For many, the road to diagnosis is a long one, and desperation can set in: julianna12369: we would much rather hear a wild excuse for something than “I don’t know”, so the wild excuse becomes the myth. #HAchat.  Along the same lines, everyone wants to hope.  You want to believe that rumor you heard about a new drug or a new procedure that will help you or someone you love.  k8lin @Dyverse_Steele I think a lot of myths can also be hope-based – we desperately want there to be a cure for HIV/AIDS and cancer #hachat.


The BIGGEST myths across health conditions!

Health Activists pointed out myths in their various conditions, and we saw several big themes emerge. Here is a list of the most common themes across health conditions and some quotes from Health Activists about how these myths affect them.


But you don’t look sick

CIRants The most obvious, common myth is that because I look healthy, I must feel good. #HAchat

pretty_serious People often seem to think I use my back issues as a cop out for work, unwanted social events, etc. Yeah I wish. #HAchat

CIRants The myth that if you’re not in a wheelchair, you can’t use a handicapped parking spot. #HAchat


You must have done something to deserve your illness

CIRants: Ppl are scared of illnesses; they want to think they’re invulnerable, so they look for a way to say we brought this on ourselves #HAchat

Dyverse_Steele that if you have hiv you must be promisicous


You’re exaggerating; the pain can’t be that bad. You’re just looking for drugs.

TiffanyAndLupus : Common #lupus myth: That lupus isn’t a serious disabling disease….In some cases it’s manageable. In others it can mean death #hachat

julianna12369: Chronic Pain Myth: those who take narcotics for chronic pain are high all the time. Truth: We don’t get high off narcotics! #HAchat


People with chronic illness are lazy and don’t want to work

kimmieCollas: ppl w/chronic illnesses are lazy, crazy, or faking #HAchat

AmySamCon #HAchat Ppl on disability r lazy and don’t want to work

FeliciaFibro @wegohealth myth: people with #fibromyalgia are lazy, unmotivated, messy, don’t want to work. #HAchat#spoonie


It’s all in your head.

CIRants That without a diagnosis, it must all be in my head.#connectivetissuedisease #HAchat

kimmieCollas: if there’s no blood test for it, it’s not real; if there are no common physical indicators for a disease it doesn’t exist #HAchat


What worked for me will work for you.

FeliciaFibro myth: that some action/medicine that helps 1 person with #fibromyalgia will help everyone with it.#HAchat #spoonie


Only men/women/children/the elderly get that disease.

CIRants That I’m too young to have what I have, as if there’s an age limit. #HAchat

nursesantos That heart disease affects only men. #HAchat

TiffanyAndLupus : There is a myth that #lupus is a women’s disease. Untrue, because men & children also get diagnosed. #hachat

FeliciaFibro myth: only older women get #fibromyalgia#HAchat #spoonie


Rare diseases are rare.

daisypiratelady : myth: #rarediseases like #behcet‘s = uncommon; 1/10 ppl have a rare disease.. Or if u havent heard of it, it cant be that bad #hachat


It’s all in your head (Part 2 – Depression and Mental Illness).

julianna12369: A common myth about my health focus:#bipolar = crazy. bipolar is a mood disorder and not crazy.#fibro is made up #HAchat


wegohealth: If you’re depressed – you’re just sad – just cheer up and realize how much worse it could be! #myth


kimmieCollas: That fibromyalgia and me/cfs is “all in your head” and you’re really just depressed. #HAchat


Patient communities aren’t legitimate.

FeliciaFibro myth: they’re only for people to complain together. I’ve gotta run now, thanks again for#HAchat#spoonie

Lupusareweloopy that we sit around all day in PJ’s chatting online and being lazy #hachat

Dyverse_Steele you are not a doctor only a patient what qualifies you to talk about your chronic illness I had someone to tell me that once #hachat

julianna12369: a misconception of patient communities and social media is that we are all here to whine and complain.#HAchat


How do we fight myths?

We fight myths by debunking the biggest myth about patient communities: TiffanyAndLupus That our patient voices don’t have value or the power to help. #hachat Being your awesome Health Activist selves is helping to debunk this myth and all of the others that we’ve listed here.   mylifelineorg : Having a personal website to share the correct information can help mitigate the spread of misinformation! #HAchat.  Keep blogging, tweeting, advocating, spread the word, tell your story, hold yourself and your writing accountable and to the highest standard, speak out and correct myths when you encounter them on and offline.

hotelqueen openly share stories, with truth and sincerity. lend a positive but not false light. truth without pity. #HAchat


What are you doing debunk myths and combat stigma in your online community?  Email to share your thoughts and your efforts with us! Be sure to join us next week for a special #HAchat in honor of National Mental Health Month where we will discuss the intersection between your condition and mental health.  Tuesday at 3 PM  EST.



Now Live: Diabetes Mealtime Management Sharing Hub

We are so excited to announce the launch of our new Sharing Hub – Diabetes Mealtime Management – and share new content with everyone in the Diabetes Online Community.


These shareable videos, feature inspiring Health Activists, Karen Graffeo of Bittersweet Diabetes and Ronnie Gregory of The Poor Diabetic and offer topics that will interest Health Activists and patients alike. We know education is a key step toward empowerment so Karen and Ronnie and joined by knowledgeable members of the Sanofi US team, Community Manager Laura Kolodjeski and Product Director Stephanie Schibell – to discuss the latest information on the product offer. The videos provide details about the offer and a Q&A section led by Karen and Ronnie.


We hope you’ll enjoy the videos, resources, and information as much as we do!

Visit  “Diabetes Mealtime Management” here


Tell others in the Diabetes Online Community about the Sharing Hub, too – here’s a tweet for you to share on Twitter (or use as a Facebook post):

I’m checking out “Diabetes Mealtime Management Sharing Hub” featuring @KarenBittrSweet & @RonnieGregoryM – join me:

And – because it’s a Sharing Hub – we’ve also included a few easy ways to share the video presentation directly from the page so you can tell your followers what you think as you watch.




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