Posts tagged ‘HAchat recap’

May 2nd, 2012

#HAchat Recap: Health Activist Mythbusters

by Caitlin

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 http://t.co/k9cPIcwk #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 editorial@wegohealth.com 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.

 

 

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April 26th, 2012

#HAchat Recap: Which came first: the blogger or the writer?

by Caitlin

Image credit: jpaxoneyes on Flickr

tmana: In short, we write in any medium and form, and to any forum, in which our voices can be heard and people will hear and (re)act #hachat

 

We’ve always wondered what made Health Activists start blogging. We know that keeping a journal can be extremely cathartic as well as an easy health management tool, but why share it? Why make your journey available for the world to see?  We think that the answer is in the message, that the inner writer in each Health Activist has something that they want others to know.  That being said, it seems unclear whether Health Activists were writers first or whether they became writers through their Health Activism.  Many seem to have writing backgrounds, whether it be journalism or some sort of technical writing, whereas others seem to have found a new path in advocating for their community and spreading awareness.  Either way, writing has become a way for Health Activists to touch the lives of others.

TiffanyAndLupus In a way writing is like opening a window into our soul. #HAchat

tmana: I like to write in ways that touch the soul. #HAchat

 

Health Activism in Motion

An amazing number of Health Activists began as writers of poetry.  Perhaps this background is what gives their writing such passion and beauty.  Poetry is a means of self-expression, and as demonstrated by these Health Activists, a gateway into other forms of writing.

apdolan: Before writing @wegohealth – I went to@EmersonCollege & graduated with a degree in Poetry ;) #HAchat

TiffanyAndLupus: In grade school & all throughout high school poetry was my means of escape. I channeled my life through my writing.

k8lin Like @apdolan I have a UG degree in poetry :) I am an academic, so I write a lot for work – it’s how I share my ideas #hachat

TiffanyAndLupus: Upon my HS graduation my English teacher (Scott S. Shaw) gifted me with a journal with a message telling me to Never Give Up. #HAchat

IIIGifts journalist and poetry were always a constant and they helped me rediscover narrative #hachat

tmana Poetry helps one see, and deal with, the most basic of emotions and issues, the core of the Self, through to Deity #hachat

 

Writing Anonymously vs. Writing as Yourself

Many Health Activists also seemed to start out writing anonymously. This is easy to understand for a number of reasons. Perhaps you don’t want to implicate family, friends (or enemies), and doctors who may not know that they are being written about online; or perhaps you’re not ready to tell others about your condition, or you’re afraid of the stigma you may face as a result. Or maybe you just know that there are a ton of crazy people on the internet and you don’t want to risk anything.  That being said, to write as yourself does take a certain degree of courage, especially when choosing to cover such personal topics as your health.

JBBC started off anonymously but seeing the courage and honesty of other bloggers helped me “reveal” myself! #HAchat

 

How Health Activism (and blogging) can improve your writing:

In addition to the ways Twitter can help your writing skills, Health Activism in itself is a means to improve your writing.  It requires you to research and analyze information, present information in a concise and user-friendly manner.  Writing a blog makes you think more critically about speaking to your audience.

kimmieCollas: I’ve also learned how to source articles, and credit digital resources #HAchat

apdolan: Writing alongside Health Activists has taught me to keep your audience top-of-mind and write conversationally & inclusively. #HAchat –

TiffanyAndLupus: Being a Health Activist Writer has fine-tuned my writing skills. I can now write critically informative health articles. #HAchat

 

Twitter

Believe it or not, many Health Activists spoke of the art and skill that goes into composing a tweet.  Figuring out how to say something educated/beautiful/pointed/inspiring in only 140 characters takes practice and is a skill that translates well into your other writing.  Furthermore, live tweeting takes this skill to the next level. You have to compose and publish your tweet while staying relevant to the conversation or presentation! EEP! Twitter can teach you how to be concise, how to really get to the core of the message. Being able to boil something down to one statement makes it far more likely that your audience will remember the message.

fitnessbloggers: I love tweeting. There’s a certain skill to being eloquent, concise and intriguing in 140 characters or less. It’s an art! #hachat

IIIGifts Must have real skill for eloquence inside 140 characters but time pressure of live tweet is even more challenging #hachat

TiffanyAndLupus Oh yes! It is quite challenging to live-tweet in a chat & bring your brilliance VS planned tweets.  #HAchat

TiffanyAndLupus: Being such an engaged ePatient Health Writer has taught me how to curate imperative information in under 140 characters!

TiffanyAndLupus Live-tweeting health/medical conferences is important to me. It’s a great way to share content w/those not there! #HAchat

 

Going Pro!

Writing as a Health Activist can also be a gateway into professional writing. Several Health Activists in our chat mentioned that they would like to go pro, and many other Health Activists have done just this, including @ePatientDave and @TrishaTorrey. Blogging can help build your name and your network, and open up new opportunities for more professional writing.  If you’re wondering how other Health Activist writers got to where they are today, just ask! There’s no reason to be nervous, just think about how you would feel if someone asked you the same question.

fitnessbloggers The bloggers I’ve met who write professionally now started by reaching out to their fave businesses/communities/organizations. #hachat

And when you do make it big, just remember: TiffanyAndLupus The real challenge is keeping your integrity, being honest, and leaving the notion of self-importance far behind! #HAchat As long as you stay true to yourself and continue to try new things – you’ll

 

Join us next week for the kickoff of May’s theme: Setting the Record Straight! We’ll be discussing myths in your health community, myths about your health condition, and how Health Activists can be Mythbusters.


 

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April 11th, 2012

#HAchat Recap: Once upon a time…telling the story of your health

by Caitlin
pamressler: Isn’t storytelling what peer-to-peer health is all about? …that is historically how we shared info. #hachat
Image credit mountainbread on Flickr


All Health Activists are storytellers. Each time you sit down at your computer to write, or explain your health condition to a friend or family members, or even visit your doctor, you are telling a story.  Health Activists are the ultimate storytellers, finding innovative ways to communicate the daily trials of tribulations of living with their condition, navigating the healthcare system, and managing relationships with family and friends.  This week, Health Activists discussed the power of using storytelling in their health communities as well as the Do’s and Don’ts of telling a good story.

 

How does storytelling enrich communication and relationships?

Storytelling has been a rich tradition in cultures all over the world. Before the written word, stories were how history was passed down from generation to generation. It was a way of preserving tradition as well as a method of instruction.  julianna12369: a story can get a message across so simply where laborious explanations fail. People love stories and often learn by accident #HAchat. Storytelling is an invaluable tool for Health Activists as well as the gateway to the online health community.

KatharineS84: I first got involved in the health community by sharing my story. Letting people into my life w/#cysticfibrosis.  Sharing my story helps make people aware about a disease many are unfamiliar w/, but in story form rather than definition. #HAchat

kimmieCollas T2: sharing my story helps readers “KNOW” that i get it, rather than just hoping i d               o . . . makes the illness more visible #HAchat

PainCHAS T2 – Personal narratives allow the online community to personalize conditions. More than a diagnosis there is a person with a story #HAchat –

Personal narratives not only help others going through the same experience or suffering from the same condition, but they help make big medical terms understandable for family and friends.  Personal narratives help break down misconceptions and misunderstandings and promote awareness.

 

What makes a good story?

In Health Activism, a good story comes from being honest and expressing real emotion.

julianna12369 when a story is REAL, you feel it, you know it. That is important. Let me feel the author is bleeding out on the page. #HAchat

susanmees – Knowing your audience. Everyone wants something slightly different. A good story can be slightly tailored and still relevant. #hachat

3lainess stories about health need hope. Sometimes there’s not a happy ending, that’s ok..but there has to be some hope.#hachat

MakeThisLookAwe : A great story pulls you in so that we feel immersed in the experience… we are right there with the person, in our minds eye #HAchat

That being said, everyone’s style is different. One of the greatest things about Health Activists is that many started writing for themselves; blogs become an outlet during tough times, a way to vent, or to keep family and friends updated on new developments in their health. What’s truly amazing is that through storytelling, Health Activists have become such an inspiration to others in their communities.  Not only do they offer up extremely personal details of their lives for everyone to read, they have become sources of advice, hope and inspiration for others.  .  TiffanyAndLupus Sharing my story helps me rise above my pain. I write with the hope that someone somewhere will read it & learn something new. #hachat

No, not every story needs to have a happy sunny ending. Some stories are dark, especially as it pertains to health. Sometimes there isn’t a next chapter. Some stories don’t have a happy ending.  No one is looking for blind optimism when they read stories, but rather a reason to hope.  Remember that even when your story isn’t positive or happy, readers still draw wisdom and inspiration from your words; they see new ways to deal with pain or hopelessness.  Remember that everyone has a unique interpretation of the world around them, and that by staying true to your Health Activist voice and mission, you will surely have an impact through your writing.

 

Where else does storytelling come into play in your online community?

One of the best times to tell a story is when you’re at the doctor.  Stories bring a personal dimension to any condition. It helps put a face on a disease, and makes it easier to understand what living with a disease such as lupus or fibromyalgia or diabetes is like.  Sure, you could go to your doctor and read off a list of symptoms and side effects, but these are just details of a larger story.  What are symptoms without triggers? How can doctors begin to make a diagnosis without a snapshot of your overall health and lifestyle?

MakeThisLookAwe IME, Storytelling is *essential* when talking with doctors. It’s how to tell the difference between drug-seekers & real folk. #HAchat

HeyVickieP Stories help w/ doctors better than a list of symptoms sometimes. #HAchat –

 

What should your story focus on?

Finding your voice is important to both your blog and your community.  You have to decide how much you want to share, how often, and to what level of detail.  Some communities are more open than others, and some Health Activists share everything. Others are more guarded due to stigma and embarrassment, and the stories that result from each community will have entirely different tones and messages.  So what should your story focus on?  Health Activists outlined what they like to cover in their stories and why:

KatharineS84 T2.1: Daily routines, fears, hopes, future possibilities, importance of fundraising. #HAchat

 

TiffanyAndLupus : I try to hold nothing back when storytelling. In sharing my deepest, darkest worries/fears/pains/happiness it resonated. #hachat

 

HeyVickieP Sharing my mental health struggles in my previous work with peers let them know it’s possible to live with this. #HAchat

 

MakeThisLookAwe Through storytelling, I’ve been able inform, educate, & inspire other people. It gives value to my pain when I can help another #HAchat

 

TiffanyAndLupus Sharing my story helps me rise above my pain. I write with the hope that someone somewhere will read it & learn something new. #hachat

 

Do’s & Don’ts of Health Activist Storytelling

Finally, as seasoned storytellers, Health Activists had some Do’s and Don’ts to share with those just beginning to tell their stories:

 

Do’s Don’ts
  • DO write strategically: Ask yourself what you’re trying to accomplish with a post:

TiffanyAndLupus T3: You can share your story in it’s entirety so long as you ask yourself what is the point of this story? Is there a lesson? #hachat

  • DO: be honest! KatharineS84: I try to just remain honest and speak from the heart. As long as my intentions are pure, the reader will see that. #HAchat
  • DO: Write. Write. Write. Speak up! Just do it and your audience will find you (HeyVickieP)
  • DO: Keep it simple, sweet, and concise: 3lainess – brevity and create short paragraphs. People get so lost with long meandering posts #hachat
  • DO: Maintain a balance: TiffanyAndLupus: Have balance. It’s okay to share your worries & concerns, but also share your uplifting & happy moments.
  • DO proofread: MakeThisLookAwe: Tips for others – find someone who can proofread & edit! The message can’t get out if it’s poorly presented. #HAchat
  • DO push your limits! @kimmieCollas: T4: push yourself . . . if it feels a little uncomfortable, someone out there NEEDS to hear it#HAchat
  • DO your research! tmana T4.1 Don’t forget research! Even when you know what works (at least for you), learn why, and why it may vary for others. #hachat
  • DO have fun! TiffanyAndLupus T4: Have fun with it! Writing shouldn’t be boring, tiresome, or annoying. When you’re passionate about it; it shows in your story! #hachat
  • DON’T force it. Not feeling inspired one day? Take a day off from writing. Churning out material won’t feel genuine to you or your readers.
  • DON’T be a Debbie downer. You don’t need to be Miss Suzy Sunshine either, but constantly complaining won’t help you or your readers through anything
  • DON’T preach.  No one likes to be lectured. Advice, yes. Judgment, no.
  • DON’T assume that your story is the only story: annatw @tmana Yes your health story is only ONE story – and telling it like it’s The Truth can have negative consequences for others. #HAchat
  • DON’T blog about more than one topic in a post (julianna12369)
  • DON’T push your agenda on others: nursesantos No-No’s include pushing your own agenda, forcing your opinions on others, being negative or caustic. #hachat
 MakeThisLookAwe Try not to attack anyone. Give people the benefit of a doubt, that whatever went wrong was not intentional. Be understanding. #HAchat

  • DON’T PLAGIARIZE: TiffanyAndLupus: Dont plagiarize! Dont take someone elses writing/links/etc and post in on your page. ASK first! #HAchat
  • DON’T get discouraged: Dyverse_Steele: do not be discouraged if no one notices or comments do it for you and others will eventually find it too#hachat

 


 

What are your do’s and don’ts? What do you think makes a good story?  Email us at editorial@wegohealth.com to share your tips!

Interested in sharing your story but don’t know how? Tune in next Tuesday at 3 PM EST for our next Health Activist chat on starting your own health blog!


 

 

 

 

 

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March 14th, 2012

#HAchat Recap: The Invisible Epidemic: Pam Ressler Talks Pain

by Caitlin

Image credit howardlake on Flickr

130 million people in the US are chronically ill, and 116 million of these people suffer from chronic pain.  With so many suffering, it’s amazing that chronic pain is something rarely talked about and a constant source of tension between those who suffer from pain and their healthcare providers (HCP).  Why don’t people talk about chronic pain? Why is there stigma against those who suffer from chronic pain? As HealClick pointed out, no one has ever questioned the “stomach ache”, so how can HCPs doubt “unbearable pain”?

This week’s chat was hosted by Pam Ressler (pamressler), a current faculty member of the Pain Research, Education, and Policy (PREP) program at Tufts University, registered nurse, social media enthusiast and pain research advocate.  Wendy Williams (TuftsPREPpain), Associate director of the Tufts Prep program also joined in on the conversation.

 

Perceptions of Pain

pamressler: Huge problem…pain is invisible! It’s not something you can put under a microscope or cover with a bandage, and this is the biggest reason it’s so hard for physicians and HCPs to understand, it’s something that they can’t exactly put their finger on.  Many doctors seem to be under the impression that chronically ill patients “just want to swim in opiates” as TiffanyAndLupus put it, and they label these chronically ill patients as drug-seeking.  They are also hesitant to treat pain because they don’t want to get labeled as “dealers” of pain medication.  Then it’s the fact that there are different types of pain.  julianna12369: “There seems to be a breakdown when it comes to visits to hcp’s for chronic vs acute pain.” Co-morbidities can also stay a doctor’s hand when writing a prescription:  julianna12369: “There is a lot of stigma. As soon as someone sees I am #bipolar and I have #lupus, that’s it for taking much of my pain seriously.”  In this way, suffering from multiple conditions may undermine a patient’s “pain credibility” with their doctor. 

ArthritisAshley #HAchat I have anxiety & rheum arthritis, chiari, celiac, palindromic rheumatism, DIL, POTS, thyroid issues but anxiety is all many docs see -#HAchat

hockeygrl1:  i wish my dr would listen more. She attributes pain to #frbro & gives me antidepressants, sometimes i need more #hachat

kimmieCollas @hockeygrl1 & some of us can’t TAKE antidepressants (manic episodes & other nasty effects #HAchat

And even if you find a doctor who understands your pain, ER trips can lead to accusations of drug seeking behavior.  In the end pain has a bad reputation amongst both patients and caregivers. For patients, it’s a life altering inconvenience.  For HCPs:  ArthritisAshley:  “I hate that chronic pain disorders are associated with hypochondrism, pill-popping etc.”

But it’s not just about the pain. It’s about how others perceive your pain and how you perceive yourself.  It’s one thing to not have your doctor believe in the severity of your pain, but what if members of your own family were in doubt? hockeygrl1 “I agree on the family worried about pain medications. My daughter mentioned that she thought I refilled mine too soon. not true”.  What about all of the things that result from chronic pain, such as fatigue or depression? How do you treat these symptoms without throwing anti-depressants at the problem? Susanmees: “docs need to ask what else is happening in someones life, not just physical pain, mental &stress issues too”.

 

Thinking outside the doctor’s office

The chromatically ill and those suffering from chronic pain seem to be some of the biggest advocates of alternative therapies, even when doctors are not: kimmieCollas “most of the MDs I’ve talked to abt integrative therapies say there’s no proof – I say if it helps, I don’t care if there’s proof .”  Here are some therapies our Health Activists have tried:

@pamressler: We need to expand our tool box for chronic pain…meditation, yoga, tai chi all can play a role #hachat

@FabulousandSick: I totally agree. We also need to add diet changes to our tool box.. #HAchat

TiffanyAndLupus T1: This month I have been learning meditation and taking a chronic pain yoga class. BOTH are helping to relieve my pain! #HAchat -

bitogoth Finally started meeting with a therapist to address anxiety/stress aggravating chronic pain, and nice versa #HAchat

PainCHAS massage therapy is smart conservative solution. also should not forget about psychology

bitogoth Heat, hydro and electrotherapy all help for me, but not always accessible (hydro) #HAchat -

There are so many different dietary approaches and alternative methods from both the East and the West; it’s just a matter of finding what works best for you.  Unfortunately, alternative therapies are not always covered under insurance, but some plans offer discounts for certain providers for services such as acupuncture.  Like all aspects of being a Health Activist or empowered in your health, it’s about doing your research!

 

Writing your own pain scale

Just as different therapies work for different people, pain is different for everyone.  We often talk about how each patient is unique and that no one deals with their condition in the same way, reacts to medication the same way, or has the same needs in terms of their treatment or care. The same goes for pain, which is another reason pain is so hard for doctors to treat.  julianna12369 “I would like pain scale thrown out. I want my hcp to know that years in pain make my 5 diff then that 5″.  But how is a doctor supposed to treat that?   How does he or she know that your 5 is worse than someone else’s?  ArthritisAshley “My pain & symptoms are always in flux. I could be fine one minute & immobilized the next”.

bitogoth suggested defining your own pain scale:  “I wrote my own scale for my doc- very specific. Has helped much in communicating pain”.  It will lead to a better conversation with your doctor about your pain, and also help your doctor decide on the best course of treatment.  You should also define your expectations with your doctor. While it’s important to strive for a pain-free life, it seems that most of our Health Activists found this to be unrealistic:  julianna12369 “I don’t expect to have ZERO pain, I think that’s unrealistic. Healthy people have SOME pain. Just manage pain.”  As always, communicate your needs to your doctor and come up with a plan to address them. Like patients in any other condition, the chronically ill and those suffering from pain are just expecting for their doctor to listen and respect them: julianna12369: “so my expectation of my HCP is to listen, believe, communicate, and try. And for me as a patient, the same.” TiffanyAndLupus “I would like my Drs to know I am coming to them for help; because I don’t have answers.”

Finally two pieces of wisdom to carry you through the week.  Last week we heard from an HCP that doctors hear empowered groups more than empowered individuals, so don’t forget: TiffanyAndLupus Alone we are one; together we are strong. @HealClick: 130 million total chronically ill… The epidemic no one knows about.

And though we doubt you need a reminder of why it’s important to talk to your doctor about your pain: ArthritisAshley – “I had a doctor tell me it was “all in my head.” It was but NOT how he meant it – I had Chiari malformation & needed brain surgery.”

Do you have other alternative ways to deal with pain?  Additional tips for communicating with your HCP about pain?  Feel free to send additional ideas to editorial@wegohealth.com!

Make sure to join us next week for more on Health Activism and Healthcare Professionals!


 

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February 22nd, 2012

#HAchat Recap: Matchmaker, matchmaker, make me a match!

by Caitlin

Image credit violetknows on Flickr

February’s Health Activist Matchmaking Month is coming to a close and this week’s #HAChat focused on matchmaking within your online community.  Matchmaking is a great way to build up your network, help people help each other, and take some of the pressure off of you as a Health Activist and community leader. Check out these tips and tricks for matchmaking and why it’s so important.

 

The key to being a good matchmaker is working within your online community.  Members must feel welcome and feel like they are respected and supported by other community members. A great online community is filled with:

 

TiffanyAndLupus: honesty, mutual health/illness journey, compassion

 

NateOsit: a lot of strong personalities and an open and collaborative feel

 

KatherineS84: Supportive people, open minds, no judgment and honesty. The more you share, the more others will open up

 

Introducing people to each other within in your community is not only a great way to build your network but it’s also a way to take some of the burden off yourself as a community leader.  Matchmaking is a way to share responsibility as well as make members of your community feel included.  TiffanyAndLupus introduces lupies to each other all the time, especially if they have similar health questions, issues or concerns.  Giving your members roles within your community is a great way to avoid burnout, which can be a real problem for patient advocates.

 

TiffanyAndLupus: Advocacy burnout is another sneaky devil & I haven’t quite yet figured out how to escape her clutches

 

Jason31480: Giving yourself a day(s) off is important so you dont get burned out also – and important to your OWN health …. #HAchat

 

Bringing others into your community to share the work is also a great way to keep your community running smoothly.  And while it’s great to ask members to take on roles within your community, if you have created an open and supportive environment, you might find, as @TiffanyAndLupus did, that members will watch over each other and speak up for themselves.

 

In terms of introducing community members to each other, twitter is a great way to do this.

 

TiffanyAndLupus: Using twitter hashtags that pertain to our content can help connect us to those who are looking for community. #hachat.

 

NateOsit: T4 On Twitter, you can make a list of people you interact w/ frequently, and chat w/ folks regularly #HAchat

 

Jason31480: Yes twitter hashtags can really go a long way. I try to use the #CDSN tag when appropriate – also have a list of members on twitter #HAChat

 

You can also use an #ff or add a cc with a group of people that have something in common.  Other ways to connect members of your community include setting up a mentor program. As Jason21480 shared, “Setting up a mentor program can be a great tool as well – matching members up together who have similar interests, symptoms, etc.”

 

#HA Chatters also had some great tips on how to make your daily online interactions better:

 

Jason3184: – pose a daily question for your members – it can be serious or fun. Such as “You know you have IBD when …” #HAChat

 

TiffanyAndLupus: Remember to respect your own health or you will not be able to help anyone! Take care of your needs so you can help others. #hachat

 

ShyDi47: We all need 2 take care of one another, @ work 2 gether @ come 2 gether as a Community that is vital either online or offline. #Hachat

 

TiffanyAndLupus: Humor is your friend! Use it to help lighten the day; never underestimate the power it has to travel online & help someone else. #hachat

 

Have any other tips on how to make your online interactions better? Think some of your community members would hit it off? Connect them today and share new ideas for connecting people here: editorial@wegohealth.com!

 

Tune in next week for the kickoff of March’s theme: Health Activists & Healthcare Professionals.

 

 

 

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February 15th, 2012

#HAchat Recap: Not-so-secret Admirers: Health Activists Reveal their Online Crushes

by Caitlin

Last week we talked about the ins and outs of relationships and your health.  Once the relationship starts to blossom, it can take on many different forms.   Friends, boyfriends/girlfriends, caregivers, but all these relationships start the same way…as a crush.  It could be romantic crush (I “like-like” you) or a friend crush (“You’re so cool! Please be my friend”), or even get a little creepy (online stalking! Uh-oh!) but it starts with a crush nonetheless.

So how does this work online?  Do you ever read someone’s blog and just think, “OMG I wish we were friends in real life?”?  Do you get a rush from a new Facebook poke? Do you stalk your crushes on their various social platforms? We know you do, we all do.  Yesterday’s #HAchat we talked about who you’re crushin’ on in the virtual world and what about them you’re into.

 

It turns out that the criteria for internet crushes is pretty similar to real-life ones.  People admire qualities in others that would draw you to them in person, someone who is open and who makes you feel comfortable, someone who is smart and passionate about their work (like all of our Health Activists!) , someone who inspires others and can make you laugh during the toughest time.

 

Lizzmariposa: confidence….always, always, always…inspiring confidence in others, or their children, that they can soar above the clouds…#hachat

Nateosit; T1.2 I love people who are passionate about what they do, who are inclusive, understanding, and help out others #HAchat

Betizuka: T2. I admire their dedication, their courage, their sense of humor, their charisma. #hachat

 

So what makes an internet crush different (other than the fact that you don’t know the person)? Crushing on someone for their internet skills (@sara_ringer) or for the design of their blog, or for promptly responding to emails, tweets, and Facebook posts. It’s a lot of work to stay connected in both the virtual and non-virtual world, and reaching out to people personally is definitely a crush worthy attribute. It shows your followers that you care about them and you want to help each person that you can. Tech skills will get you noticed too, as will your dedication to regularly posting new content.

 

Sara_Ringer: I envy tech savvy people. I see a blog I like and swoon over their skills.#Hachat

Tmana: T1.2 For some, the ability to post daily — it takes me a lot longer to craft a great blog post than it seems to take my “crushes” #hachat

Tmana: T1.2 For others, their access to information (and review devices) before it is common knowledge (or available to purchase) #hachat

 

Internet crushes inspire slightly different feelings than real-life ones though, especially in the health sphere.  Health Activists inspire, give advice, and teach.

Sara_Ringer: It’s a feeling of learning from them. I think to myself “i wish i thought of that” when I see something I like/admire. #HAchat

Lizzmariposa Sometimes, I am more inspired by the folks who just quietly do the things they need to get done, without fanfare… Inner strength #hachat

Lizzmariposa: It’s a feeling of learning from them.  I think to myself “I wish I thought of that” when I see something I like/admire.

Susanmees: I crush on people who seem to just be really ‘good’ – I see people facing extreme challenges and offering me kind words. Amazing. #hachat

 

One of the best parts of crushing on someone is that those feelings make us want to better ourselves. lizzmariposa: “When I am around these folks, I am reminded of… how much potential there is in me, and I forget for a moment I have X illness.”  Think about someone you have a crush on in the real world. You might pick out a cute outfit on a day that you’re going to see them, make sure you do your hair, or just do little things you think they might notice.  It’s just as important to put your best self forward online, and yesterday’s chat provided great tips for making yourself more crush-worthy.  It’s important to bring non-health related stuff into your writing to round out your “voice” and make you more approachable. Similarly, if you can, reaching out to your followers by answering emails, responding to comments, and re-tweeting or tweeting at followers builds your personal network. Sharing those “AHA” and “UGH” moments (@lizzmariposa), as well as your successes and failures, personal bests, and helping to connect others. Vlogs are another great way to make a personal connection with your followers.   Give people something to laugh about. Share. Be open.  And finally, in case you were wondering if anyone’s crushing on you:

Sara_Ringer: Just a reminder to all of us here that you do all these great things. *crushes on you* HAchat

 

 

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February 8th, 2012

#HAchat Recap: Love and Other Drugs

by Caitlin

The start of a new relationship is the most exciting part.  Butterflies flutter in your stomach, your heart lifts when you see a call or text message, you fluctuate between excitement and nervousness while getting ready for a date.  But what about the anxiety that comes from deciding how to tell someone you’re starting to care about that you’re sick? How does a diagnosis change a long-term relationship?  How do you go through all of this and still love yourself?  These are some of the topics that we touched on in this week’s HAChat.

Loving yourself

The most important relationship you have is with yourself, especially when it comes to managing your health. Learning to deal with a condition has a direct impact on your self esteem, and therefore your relationships with others. Relationships with one’s own health vary depending on how long one has been dealing with that disease.  As you’re learning how your condition will affect your life, the relationship tends to be terrible, full of disappointment and betrayal.  Then things might slowly begin to shift, develop into what @TiffanyAndLupus: describes as “a love/hate relationship.” Acceptance is a gradual process that comes with time, though the love/hate relationship may remain.  Overall, @TiffanyAndLupus: Self-esteem issues usually go hand in hand with chronic illness. It’s a challenge I personally have daily.

So the question is, how do you stay on the “love” side of the love/hate relationship? Everyone has different coping mechanisms. Finding understanding and support is important for many people, and for our Health Activists, reaching out to support others is equally important.  Connecting to others that understand what you’re going through is key for bouncing back during tough times. Some say that a sense of humor helps.  It’s also important to understand and respect yourself, to know that illness is not your fault, to learn what taking care of yourself really means, and to indulge in the little things that will make each day a little better.

Loving others

Romantic relationships are another story. Now you have to balance your own needs with someone else’s.  How do you go about that? When do you tell someone about your condition?  As @mandylipka tweeted yesterday:  ”It’s like ripping off a band-aid. But the fear of being judged or losing the person is crushing.”

For invisible illnesses it’s both easier and more difficult to disclose a condition. While invisible illnesses allow you to more or less choose when to tell someone, they might not understand what being sick means to you.  Visible illnesses take that decision from you.

@Joltdude Usually my condition brings itself out, the tubing and bruises are a dead giveaway

@joltdude On the relationship front, disclosure cn break “or sometimes make” a relationship.. sum R freaked w/ visible @Medgadget & such

So where do you find the courage to rip the band aid off?  How do you know if it’s the right time? How much do you tell them? Unfortunately, there’s no handbook to tell you exactly the right time, and it seems so dependent on the person, the relationship, and the condition.

Longterm relationships are different. In the intro to the movie 50/50, 27 year old Adam is diagnosed with a rare form of spinal cancer.  He and his girlfriend, Rachel, have been together for some time, but Adam still gives her an “out” when he is first diagnosed. He understands that it might be too much and doesn’t want her to bail during his treatment, which she sadly does. This is an unfortunately real scenario.  TiffanyAndLupus T2: I’ve heard so many real life stories of those who are chronically ill & lose their loved ones because of the complications. #HAchat -3:28 PM.   No, it doesn’t state anywhere in the wedding vows that “if you get too sick I’m allowed to quit loving & caring for you,” but that doesn’t mean that this doesn’t happen.  Sometimes it seems that love just isn’t enough. Illness can wear on you and your partner. You may no longer be able to control all the variables you need to stay healthy.  Finances can become a huge source of anxiety.  Ourchronicpain said, ”I think Finances are a big issue of illness and relationships. Someone new, or current, may see that illness as a burden.”  It is a huge disappointment when friends, family and significant others don’t play the roles that you envision for them, or when they don’t understand what you’re going through. But it’s important in managing your health to learn what you can and cannot expect from others, and to seek support elsewhere if necessary.  As kimmieCollas shared, “Because of other issues, my blood relatives are no longer in my life. My “chosen” family is supportive.”

Setting up boundaries is one way to maintain balance in any relationship.  Obviously your caregiver is going to need information on your health on a day-to-day basis, but not everyone in your life will and it might not be best for your relationships with friends and family to provide so many details about your condition.  The key is figuring out what works for you and yours.  ArtAppleADay I have friends who know but I don’t talk about AS or my health to. It is nice to find some balance AND a place to get away from it. #hachat -3:42 PM Feb 7th, 2012.  At the same time, as TiffanyAndLupus put it, “Honesty is vital. By sugar-coating how my illness made me feel daily; I only confused my friends/family to it’s severity.”

Finally, for all the Rachel’s out there, there are a lot of heroes as well; caregivers and friends that you know you can always rely on even when your health gets bad. It’s important to remember that though your condition might change your relationships, it doesn’t mean that you aren’t deserving of love in your life, or that you won’t find it.

NateOsit My partner is very understanding. It can be a bit of a drag, but being open can lead to deeper relationship. #HAchat

ArtAppleADay T2: Been married 13 years – My hubby has learned a lot & romance is a bit different than before diagnosis – not as spontaneous. #hachat

flywithhope T2 My relationship with my husband is more of a care giver/care recipient. But there is a lot of love. #HAchat

@TiffanyAndLupus: Beautiful relationships can bloom despite illness. Dont let fear stop you from making new friends & be honest. #HAchat


Who’s your Valentine/caregiver/champion this year and how have they helped you in managing your condition? How do you keep up with relationships and your condition? Get a conversation going in your community!


 

 

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January 25th, 2012

#HAchat Recap: Health Activists Define “Awareness”

by Caitlin

For those of you who didn’t tune in to yesterday’s fabulous #HAChat, the topic was “awareness.”  What does awareness mean to you and your community?  For many of Health Activists, spreading awareness is what made them open up about their disease. KatharineS84 said, ”I’m excited for this topic because it’s the main reason I started opening up about living with #cysticfibrosis.“  However, in following yesterday’s conversation, it became clear that “awareness” doesn’t have a very clear definition. It takes on a different meaning depending not only on your perspective as a Health Activist, but also depending on your condition.  Awareness of diabetes will certainly differ from that of multiple myeloma, as will expectations of how aware others should be.  Some definitions from our chat yesterday included:

tmana “Awareness” means many things depending on context. We expect gr8er understanding from patients, activists, friends/family #hachat.

lizzmariposa To me, being aware of any health condition is a conscious decision we make to embrace knowledge, information, and the human factor. #hachat

ncrainbowgrrl T1: that there are actual people living with these conditions/ diseases and no, we don’t look any different…

kimmieCollas T1: recognizing that even if you don’t understand what we’re going thru, we ARE sick, not faking #HAchat

tmana T1. Also, that medical management technology is NOT synonymous with “cure”, and that costs incl physical, psych, social, and fiscal #hachat

So with so many different opinions and perspectives, how can we define such a broad concept? I’ve decided that awareness isn’t quite one thing, but a combination of many.  Here’s what I came up with:

Awareness isn’t quite understanding. According to @KatherineS84, “understanding comes with experience.”  Awareness is having a basic understanding of what a disease or condition is and how it affects the body and mind. It’s enlightenment and education.  It’s seeing past the condition and into the affected person.  It’s respect, empathy, and an openness and willingness to learn.  It’s a state of mind in others that makes you feel that you are not alone.

Awareness isn’t quite knowledge. If it was, then patients wouldn’t feel alienated or misunderstood by healthcare providers.  Doctors would understand pain and you wouldn’t be accused of faking. Patients would feel that they are heard and their experiences understood. If awareness was knowledge, then reading a text book would allow you to understand what it’s like to live with lupus, to survive cancer, to have diabetes. On your side, awareness is having the knowledge to understand what your doctor is saying, and to be an equal participant in your care. As NataliaElizabea said, “I think sometimes being aware goes hand and hand with being able to question the facts as they are presented read between the lines.”

Awareness isn’t the same for everyone. For some, it’s self-awareness, awareness of your condition and how it will come to affect your life. As KatharineS84 shared, “As a patient, I had to become aware myself before I could move forward. Denial can be a difficult hurdle, but it’s key.” And, similarly,  @ncrainbowgrrl noted, ”I also need to make sure I take care of ME while helping to educate others.”

For others, awareness means support. It means your friend/family member/caregiver has the understanding and the respect to be there for you even if they don’t quite understand what you’re going through.

For communities, awareness is recognition, acknowledgement of a condition and the physical, emotional and economic implications it has on those if affects.  For some communities expectations will be high, but for niche communities they will be lower.

sanmees Awareness can vary by community- the awareness goals for an unknown condition will be different than one with a lot of coverage. #HAchat

KatharineS84 @susanmees So true! For #cysticfibrosis, goals start out basic due to lack of knowledge of most people. #hachat.

Not only will levels awareness differ between people, but awareness is knowing that not all patients are the same.

tmana Certainly important to recognize that in some silos, there is a wide range of effects on people-living-with, from mild to devastating #hachat

GermanInAlabama A huge part of awareness for me is recognizing that there are many facets to each story/condition. There is no one size fits all #HAchat

Awareness isn’t always a means to an end. Awareness isn’t always about raising money, though it can play an important role in attracting donations.  It’s not necessarily about reaching a goal, such as a number of people educated about your condition. Awareness goals will also depend on whether you’re a patient, caregiver, healthcare provider, or a Health Activist:

lizzmariposa I think awareness goals are ultimately spurring curiosity in people to learn more, seek more, question more, HUMANIZE illness more. #HAchat

wegohealth T4.1 As Health Activists, we can learn more about others’ conditions & bridge gaps. We can teach others what works re: awareness. #HAchat

wegohealth Humanizing a condition & presenting the narrative piece is a great way to make awareness “stick” & people to really care – I think. #HAchat

Awareness isn’t just a state of being. It’s a continuum. As kimmieCollas shared,  ”Awareness is a spectrum – there is always something new to learn.“  It’s changing all the time depending on new drugs/treatments/test/procedures, and the especially by the way we can access information on the internet.  The level of awareness reached by each person will differ as well.  Some will stop at only a basic level, because as GermanInAlabama said, ” re:stopping at basic awareness: It’s easier. More comfortable because becoming more aware might mean becoming involved.” For others it will depend on their direct exposure to a condition.

Finally, why be aware?

bobutler T3: It’s bad enough to be suffering from something. It’s far worse to feel as though you’re suffering alone. #HAchat

Have any other thoughts or ideas of what awareness means? Share this post and start a conversation in your community.

See you at next week’s #HA Chat!

 

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January 19th, 2012

#HAchat Recap: Health Activist University

by Caitlin

Back to School!

Great job to all our participants in the “What if…?” Tweetchat this past Tuesday! By designing the curriculum for our fantasy Health Activist University together, we came up with a lot of ideas about resources that would be useful for the online Health Activist community as a whole.  This exercise also helped us set goals for who we should try to reach with our activism and to what end.  Here’s an outline of our new curriculum:

Course Offerings

The ideal Health Activist curriculum would cover topics for everyone from newbie activists to our most seasoned community members.  Everyone could benefit from some Social Media 101 – with topics ranging from tweeting, networking, and linguistics for industry/community jargon.  Then there’s the art of building your online community, starting with “Blogshop”  to go over the basics of building your blog and website management and ending with tips to build and interact with your online community.  Everyone should take a course focusing on balancing your advocacy and your personal health (@FindStability).

Once you’ve completed such required courses, it will be time to move on to more specific topics, such as Health Statistics, Empathy Online 101, alternative medicine and therapies,  and learning the in’s and out’s of pharma, regulatory, and insurance.  And finally, for taking your activism to the next level, courses on mobilizing activism into action! Courses that would answer the question “What are your options as Health Activists?” and “How can we be heard at the local/state/national level?”  As AliciaGetsFit put it:

AliciaGetsFit #hachat Also, who can we partner with (non-profits, orgs) locally & nationally that want to support our cause, get involved.

Rate my Professor

And after we’ve designed the curriculum, we discussed who exactly would be teaching these classes. What would help us put these concepts into action is a mentor, someone inspiring to show us the ropes.  Someone like this:

AliciaGetsFit @kimmiecollas :) I associate activist with being able to rally a crowd, move an audience, inspire change #hachat.

2manyfish2fry @wegohealth Someone who was kind and supportive, but also tough.

FindStability @wegohealth someone who is assertive, un-biased, community based, a person who listens and leads. #HAchat

Someone you can go to with your biggest questions. Who you can ask for blog post ideas, run ideas by, and who will help you determine how to best deliver your message.  Someone to keep you motivated when you’re sick, or when your community is sick, but who will also be there to remind you that your health comes first.  In the end, your mentor would help you to get your message out there, to find ways to communicate to new audiences in innovative ways.  They would help you craft your image, to correct misconceptions about Health activists, such as:

kimmieCollas@wegohealth T3.2 that we’re trying to be doctors . . . too many think that because we’re proactive we’re trying to practice medicine #HAchat

MeredithGould T3.2 That patient communities are made up of whiners, malcontents, & nutcases. Too blunt?!? #HAchat

 

These Health Activist mentors would help you define your reach. And get your message to the people who need to hear it most. When we discussed who needs to hear about Health Activism – here’s who you’d tell about your condition or your health activism if you could:

kimmieCollasT3.1 – the FDA. they need to know that WE should come first, not profits for pharma #HAchat

MeredithGouldT3.1 A recently dx’d patient who is looking for support, information, encouragement & hope. #HAchat

apdolanT3.1: President Obama. (Why not?!) #HAchat

Once you’ve got all that down, what comes next? As tweeted by flywithhope : Do we ever stop learning how to be effective Health Activists? @susanmees #HAchat

 

Finally, here are some very valuable lessons from our very own Health Activists, mentors in their own right!

Susanmees - Connect, connect, connect! Health Activists in other conditions know what’s up and can help you (regardless of diagnosis). #hachat

kimmieCollas: be open-minded, never stop learning – there’s always something new and helpful to be found, and you’ll never know it ALL #HAchat

KatharineS84: To not forget their end goal: to spread awareness, support, and advocate.

kimmieCollas: every body is different, no 1 thing will work for all patients, even if the illness is the same #HAchat also take care of themselves first. #HAchat

 

 

Thanks to all who participated and we look forward to chatting with you again next Tuesday at 3pm ET for another Health Activist Tweetchat!

 

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