Posts tagged ‘May 2012’

May 31st, 2012

Setting the Record Straight: Lyme Disease

by Susan

May is Setting the Record Straight month here at WEGO Health and we’re excited to hear from YOU about the myths & misconceptions that irk you most.  We recently reached out to some Health Activists who participate in the Lyme Disease community and asked them to share their top myths & misconceptions about Lyme Disease.

 

Here’s what we heard from Kenneth Mercure (@thelymelife and http://facebook.com/lymefighter24) and his community – with additional commentary from Lyme Disease Health Activists Jennifer (from http://jmgarnet76.blogspot.com) and Jenny (from http://mylymechronicle.wordpress.com and @artthentic):

 

Top 4 Myths and Misconceptions About Lyme Disease:

 

1) Lyme Disease is Difficult to Get and Easy to Treat


There is nothing difficult to catch about this disease. Anyone living in heavily populated tick country (northeast and upper Midwest) or anyone with a love for outdoors knows how easy it is to pick up ticks during this season. When treated early further complications of the disease can be avoided. However, once it has been allowed to proliferate through the body it can take months or even years to recover. Treatment can also be very expensive, so getting better often relies on what a patient is able to afford. Costs can range from a few hundred dollars to tens of thousands of dollars a month and are not always covered by insurance. Coverage is often denied by insurance companies, citing the guidelines for the diagnosis and treatment of Lyme written by the Infectious Diseases Society of America (IDSA) as proof that long-term treatment is unnecessary and/or experimental.  In addition, the combination of medications needed to combat Lyme Disease and prevent it from morphing into a cyst form is more intricate than the standard treatment.

 

2) A tick must be attached for a certain period of time for disease transmission to occur


This is a hotly debated issue as some experts say it needs to be at least 24 hours or more and others say there is no set time. Couple this with the fact that many individuals either don’t remember how long the tick was on them or simply never saw one at all and it only further makes figuring out how long a tick has to have blood to blood contact before transmitting disease that much more difficult. One fact that is known for sure is that the longer a tick is on you the higher your risk for infection becomes.

 

3) Everyone with Lyme gets a Bulls-Eye Rash


Often thought of as the most definitive early symptom of Lyme Disease, the Bull’s-Eye rash is not as common as people think it is. Experts suggest that the rash is seen in as little as 30% of cases, with rashes also going unnoticed due to body hair and unusual placement on the body.  The deer ticks most commonly known for transmitting the disease are often the size of a pin head! Impossible to find these in your hair (or many places) unless they are already engorged with your blood and actively transmitting infection.

 

4) Lyme Disease is Rare


The Centers for Disease Control and Prevention (CDC) reports around 28,000 new cases annually, but admit that the actual number is likely ten times that, totaling 300,000+ new infections per year. That would mean that since the year 2000 there have been 3,600,000 new infections. The numbers say it all- Lyme Disease is not rare!

 

 

Want to see all 14 of the myths and misconceptions we heard from Lyme Disease Health Activisits?  Check out our Facebook Note and be sure to Like our page at www.facebook.com/wegohealth.

 

 

 

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May 31st, 2012

#HAchat Recap: Finding Identity in Diagnosis

by Caitlin

When you’re getting to know someone for the first time, there are certain things about yourself that you want them to know. You may not even realize that you’re doing it, but there are certain key pieces of information that whether consciously or subconsciously, you need them to know. Maybe it’s your profession, or where you’re from, or the names of your children. Maybe it’s that you’re a dancer or a world traveler.  No matter what these things are, they are things that if someone didn’t know about you, they wouldn’t fully understand what makes you, you. They’re the essence of who you are.  There are things that you do, that you believe, that you embody, that make you who you are.  So, what happens when you’re sick? When your diagnosis becomes a very integral part of your reality? When you can no longer do all of the things that made you who you are?  Does your identity change? Do you feel differently about yourself? Do others see you differently?  Your condition may not be something you’d tell someone about at a party, but it’s still a part of who you are, and only you can decide how it will or will not define you.  In this week’s Health Activist Chat, we discussed the crossover between identity and diagnosis.

 

The Positive Power of Diagnosis

For some, diagnosis can lead to very positive changes in sense of self and identity. For those that have been searching for a diagnosis, for a name to call what they feel and for a justification for their symptoms, a diagnosis can be liberating.  Finally – friends, family and doctors will see that you’re not making it up, that there is a name for what your body is doing and there is something that you can do about it.

serenebutterfly Before the diagnosis I thought myself as being weird or weak, after I realise it’s because I have a neurological condition #hachat

CIRants Getting a diagnosis was a relief – I had a course of action after 11 years of not knowing what was wrong. #HAchat

TomKindlon: Before the diagnosis I was full of doubts about myself: wondering was I doing something wrong in my lifestyle.#HAchat

MakeThisLookAwe I’m 2 completely different people before/after my condition. I can’t be her anymore. Her activities hurt. She is not me. #HAchat

marandacarvell @wegohealth it’s been good for my emotional health in many ways. i know i have A, B, C and not just tired/crazy/whatever #hachat

serenebutterfly I found my diagnosis bittersweet – upset as there’s nothing they can do to fix me but relieved that there was a name to it #hachat

TiffanyAndLupus Post-diagnosis me now feels very empowered by my life choices after diagnosis. By owning & admitting it I feel much happier. #HaChat

 

Diagnosis gives you the power to spring into action.  It means that there is something that you can start doing to hopefully make yourself feel better. KatharineS84 : Having an answer to why I was sick all the time was a relief. Initially I felt more in control. #HAchat There are new doctors to see, new treatments to try, new research you can do. Where you might have felt lost, you now have some direction. No matter what the outcome, you can at least start to make some changes to your life.

CIRants Diagnosis sets expectations – higher or lower, they are what they are, and it provides a chance to accept them. #HAchat .

marandacarvell it’s a lot easier to have a plan of action, even if i don’t always love the plan ;)  #hachat

 

Self-Image and Perceived Identity

KatharineS84: Having a diagnosis has pros & cons. It gives you some power, some options, but it also opens up other scary doors. #HAchat

Diagnosis can also lead to a serious identity crisis. Your diagnosis will likely mean a monumental shift in lifestyle, in everything from your job to the medications you take, the way you spend your free time, your exercise habits, the way you have fun, your relationships with friends and family and your potential for relationships in the future.  These are scary things to face, which is why depression is such a common comorbidity across conditions.   @TiffanyAndLupus: For many, illness is destroyer of all they loved. For some denial is better than accepting reality #HaChat.   You may have to give up some activities that you loved, or friendships that you can no longer maintain.  You may have to give up some things which your identity and your happiness previously depended on.

This sense of loss can be exacerbated by the way that others see you and your new diagnosis (or lack thereof). It is for this reason that many choose not to disclose their condition in the work place, or that you may have stopped discussing your journey to diagnosis.  You don’t want people to see you as “sick,” as a faker, or as an exaggerator.  There’s more to you than your symptoms or your diagnosis, and if people find out they might make assumptions about you based on what little they know about your condition. They may blame you for your illness, saying that you deserve what you got based on assumptions on your behavior.

Dyverse_Steele sometimes the stigma of disease can even affect your own thinking maybe it is in my head a little bit #hachat

KatharineS84: I struggled w/ppl finding out I had CF before they got to know ME. Didn’t want them to only see me as “sick.”#HAchat

 

What’s your label?

PurdueMocha: My friends see me as a “dia-bad-ass” #HAchat

In your journey to redefine yourself, you’ll need a new label. It doesn’t have to be something that you tell everyone, shout from the rooftops or tattoo on your body (though we have seen some pretty awesome spoonie tattoos), you have to pick a title or a label that works for you.  The decision is yours and yours alone.  julianna12369 We choose the label we want to carry, we walk the life we want to walk. Our limits are our own. We make our rules. #HAchat

TiffanyAndLupus : In the lupus community, I like to think of us as “Lupus Warriors”, we often call each other “lupies”. :) #HaChat -3:24 PM May 29th, 2012

KatharineS84 : We refer to each other and cysters (females) and fibros (males). It does make it feel like more of a “club” than an illness. #HAchat

julianna12369 It’s an umbrella of all chronic illness. You got it, it’s chronic? Then it’s awesome to us! #chronicallyawesome

What’s the benefit of picking one of these nicknames/titles/labels to accompany your new sense of self? It comes with a whole community of support.  It connects you to others living with your condition, but it also gives you a way to connect with others across conditions.  marandacarvell terms like #spoonie help ppl connect and create an instant community of ppl who ‘get’ you

MakeThisLookAwe For all invisible diseases, pre- and post-diagnosis, But You Don’t Look Sick’s #spoonie!!! #bydls #HAchat-3:25 PM May 29th, 2012

marandacarvell love @whatthejules #chronicallyawesome hashtag for uniting others who lift me up, don’t bring me down, yet still get me #hachat

MakeThisLookAwe My disease is rare (less than 400 cases), so I call us #medicalunicorns #HAchat

 

Taking Control

You may not have control over your diagnosis or your condition, but you do have control over how you handle it.  Sometimes things happen for a reason, but sometimes things just happen.  Without rhyme or reason, this is the hand you’ve been dealt. Now it’s time to learn how to play it.

mandylipka: Take it one day at a time. Your dx doesn’t define you, you define your dx. And as always, be your own advocate!#HAchat

TomKindlon: (Tips for “new” patients) “Things work out best for those who make the best out of how things work out”#HAchat

MakeThisLookAwe Sometimes, things won’t work out for the best. But we can #MakeThisLookAwesome, even if it is only to defy slowly dying! #HAchat

TiffanyAndLupus: Just because we have to adjust our lifestyles post-diagnosis does not mean we can’t still enjoy it. Find your NEW happy! #HaChat

 

How do members of your community identify themselves? Do you have a nickname for members of your community or your condition? If so, we’d love to hear it! Email us at community@wegohealth.com or interact with us on Facebook or Twitter.  And as always be sure to join us next week for a special #HAChat to kickoff June’s Health Technology Month!


 

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May 30th, 2012

What Depression Health Activists Want You To Know

by Caitlin

In honor of National Mental Health Awareness Month, WEGO Health conducted a Health Activist Roundtable with several members of the online Depression community – Tiffany, Corey, Dani, Will, and Patrick.  They shared some very honest and important feedback based on their experiences within the community and we wanted to make sure you had a chance to hear from them as well:

 

“These kids yearn to talk to someone about “ suicidiation” and self-injury and not be ostracized for it.  It’s the “S” word. I think it’s healthy to talk about it if it’s a part of your life because the more you get it out the more you’ll start to heal.” –Tiffany


“I do most of my work on YouTube, video blogging. It’s a close knit community of younger people who feel more comfortable opening up.   I wish there was a way for it to not be so public because it does help to keep things face to face, and there have been times where I’ve wanted to take all of my videos down because I’ve felt vulnerable.  I’m now at the point where I would never consider doing that but for others who are just starting then it can be hard as you get some negative feedback.” –Dani


“What we need is a hotline to direct them to those [mental health] centers.  There is no intermediary step for people to get services without going into crisis. The way the system is set up is very frustrating and it doesn’t provide quality care.” –Patrick


“The medications for depression are more controversial and less documented than in other areas. The modalities that are used, some of which are well documented and some of which aren’t.  Treatment options are very confusing because people don’t really know what to believe or who to trust. Opinions are polarized in terms of use of medication.  Mental health is unique in terms of how controversial and confused the scene is.”  –Will


“People would be surprised to know that we can still be creative. Sometimes I write about people that are famous that struggled with depression. You can be a success. You can have depression and borderline personality disorder and all sorts of mental illnesses and still have a successful life.” –Corey


“We’re not always on the edge of being locked up. We express extreme emotional states that might not be positive but that doesn’t mean that we can’t get better. We’re not being manipulative or avoiding treatment or health.” –Tiffany


“Though readership is fairly robust, participation is low. I blog under my real name and I don’t hide much. This is the only way we will move past the point where people feel so ashamed.  The only way we will do this is by modeling the behavior, by having more people that present themselves as having mental illness or condition and having a full and productive life. It’s a hard way to go but it’ll have a bigger impact.” –Will


Be sure to follow these awesome Health Activists:

Will

www.willspirit.com and @willspiritM

Patrick

http://www.shareyourblues.com and @ShareYourBlues

Dani

http://youtube.com/uer/thedanizblog and @thedanizblog

Tiffany

https://www.facebook.com/pages/Borderline-Personality-Disorder-Coping-Awareness/381410498561987 and @RiotGrrrlJax

Corey

http://hopeisreal.blogspot.com and @hopepersists

 

Want to participate in an upcoming Health Activist Roundtable?  Sign up here: Health Activist Roundtable

 

 

 

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May 30th, 2012

Celiac Disease – A Health Activist Perspective

by Susan

In honor of Celiac Disease Awareness Month, WEGO Health recently got in touch with Celiac Disease and Diabetes Health Activist Bridget who blogs over at Bridget Writes.  As someone who focuses on both diabetes and gluten-free, Bridget had some great things to share with us about Celiac Disease.

 

What do you wish other Health Activists (those not familiar with Celiac Disease) knew about you, your community, or living with celiac?

It’s a difficult process learning how to go gluten-free in the beginning, but it doesn’t mean we can’t eat anything. We have to follow a gluten-free/ lactose-free diet at my home due to celiac disease and lactose intolerance, so it was a bit of a change in cooking and lifestyle in the beginning but it’s gotten easier over time. Just because they hear gluten-free doesn’t mean we’re eating foods that aren’t yummy and delicious. There are many meals that are gluten-free that are quite tasty.


What do you wish healthcare companies (insurance companies, pharmaceutical companies, etc.) knew about you, your community, or living with celiac?

I wish there was more recognition by healthcare companies, and even doctors in general. It took a fight and battle just to get tested and finally get the diagnosis. There should be more patient listening and recognition overall.

 

What myth or misconception about celiac disease would you most like to set straight?


That celiac disease means you are frail or fragile. You are a normal healthy person that just happens to live with a chronic illness. The diagnosis of celiac disease forces you to live a more healthy lifestyle overall. You can do everything you did previous to diagnosis; you just have to watch the way you eat now.

 

Thanks to Bridget and all of our other Celiac Disease Health Activists for sharing their thoughts and experiences and helping us celebrate Celiac Disease Awareness Month!

 

 

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May 24th, 2012

Mental Health Month – Focus on Bipolar Disorder

by Susan

 

WEGO Health recently held a Health Activist Roundtable discussion focused on the bipolar disorder community and had the chance to discuss bipolar disorder with 3 awesome Bipolar Disorder Health Activists – Carlton, Cimmerian Ink, and Julie.  They shared some very honest and important feedback based on their experiences within the community and we wanted to make sure you had a chance to hear from them as well:

 

“I see a lot of activity from the people who are not doing well with their bipolar.  I’d like to see more from those who are doing well and can offer support.”

“Without question, people don’t know how serious bipolar is.  It is a very serious disease and it affects every part of you when you’re sick.  The general population puts their own perception on us – that we’re lazy, or don’t get things done, or we’re stupid.  It would be great to see bipolar get the attention it deserves.”

“I’ve actually seen the myth and the expectation that people with mental illness will commit violent crime.  The media plays into this.  People are scared of those with mental illness even though we’re more likely to hurt ourselves than them.”

“There needs to be more communication between your physicians when you have bipolar, doctors that aren’t your mental health professionals. They need to understand how other medications interact with bipolar meds and what can happen.”

It can be tricky blogging about bipolar disorder.  You have to be very careful when you’re dealing with someone in crisis and interacting with them on your blog, twitter, etc.  It can be complicated to help someone when you’re ill yourself.”

 

You can see all of the feedback from our session in the Health Activist White Paper on Bipolar Disorder – we’ve posted it on our Facebook Page (linked to www.facebook.com/wegohealth)!  You can also connect with our Health Activists through their own social profiles:

 

Carlton
www.bipolarbarebook.com and @bipolarbare

 

Cimmerian Ink
www.bipolardid.wordpress.com and @CimmerianInk

 

Julie
www.bipolarhappens.com/bhblog and @juliebipolar

 

Want to participate in an upcoming Health Activist Roundtable?  Sign up here: Health Activist Roundtable

 

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May 23rd, 2012

The Final Showdown: Myths vs. Truths!

by Caitlin

 

Image credit: ejbsf on Flickr

In honor of our Myth Mugshots Photo contest, in this week’s #HAChat, we encouraged Health Activists to put it all out there.  No pomp and frills, just stating the myths and then debunking them with truths that we, as empowered patients in the online community, are all too aware of.  It is your job as Health Activists to wear these truths on your sleeves, to educate others, to raise awareness. Here is the list of myths Health Activists are debunking and the truths they wear proudly.

 

Myths about patients:

Natasha_tracy: #myth – People with mental illness are violent. People with depression are lazy. #hachat

Kimmiecollas: people with invisible illnesses are all faking to get out of doing things they don’t want to do (like work) #HAchat

PurdueMocha: Patients “deserve” their conditions #HAchat

Pamressler: If there is no physical evidence (ie xray, mri) pain must be psychological #HAchat

 

Truths about patients:

Kimmiecollas: Truth1: therapy doesn’t CURE mental illness, but it can help you learn to cope with it better #HAchat

Natasha_tracy: #Truth – people with a mental illness are more likely to be victims of crime/violence than perpetrators of it. #hachat

PurdueMocha: The hardest part of dealing with conditions for a patient should be dealing with the condition, not the myths. #truth#HAchat

Sara_Ringer: Not all sick people look sick at all times. #HAchat

Pamressler: Truth1: Pain is subjective. It is what a patient says it is #HAchat

Kimmiecollas: Truth1: We DO have good days, but it doesn’t mean we’ve “recovered” #HAchat

Makethislookawe: T1: 96% of #chronicillness(es) are invisible http://t.co/Pcjcicvb#HAchat

TiffanyAndLupus: #Truth : Patients don’t need to have a medical degree to comprehend when a physician is being dismissive about their illness! #HaChat

 

Myths about ePatients

CIRants: M2: Empowered patients are just looking for special treatment #myth#HAchat

TiffanyAndLupus: #Myth Epatients are “god-like”. They’re rude, annoying and think they know more that their doctors. #HaChat

PurdueMocha: M2: Asking for a different form of treatment (after doing research) is overstepping the patient’s role and should be ignored. #myth#HAchat

 

Truths about ePatients

Natashay_tracy: Access is important to being an e-patient. Not everyone can be one right now – we need to work on this. #truth#HAchat

CIRants: We work hard to learn as much as we can to improve our health as much as possible. #HAchat

Natasha_tracy:#truth patients deserve to be treated with respect and asked for their opinion whether or not they come with an “e” #hachat

TiffanyAndLupus: #Truth ~> T2: The goal for most Epatients is to overall help. There is no other agenda but for better healthcare & wellness. #HaChat

MakeThisLookAwe: M2: #ePatients can’t tell the difference between snake oil and scholarly articles #HAchat

 

Myths about Doctors and Healthcare Professionals


Kimmiecollas: Myth3: doctors know (and warn you about) all dangerous side effects and interactions of the meds they give you #HAchat

TiffanyAndLupus: #Myth There are no good doctors or healthcare professionals out there. (Not true. It takes persistence, they’re out there!) #HaChat

 

Truths about Doctors and Healthcare Professionals

TiffanyAndLupus:#Truth: Physicians are NOT above the law, god-like, higher-than-thou. They are people & also patients just like everyone else. #HaChat

Eczemasupport: Truth: it takes time in a consultation and trust to enable an equal partnership between patient and doctor #HAChat

Makethislookawe: Doctors continue to educate themselves & their staff, even after graduation. #truth#HAchat

wegohealth:  There are doctors/HCPs who want to progress with technology, apps, & epatients. #truth It takes time! #HAchat

TiffanyAndLupus: #Truth There are doctors who positively embrace their patients when they bring in online resources & openly discuss options. #HaChat

 

Myths about Conditions and Treatments


Wegohealth: People in pain are drug-seeking. #myth #HAchat

Makethislookawe: All medications work the same on everyone (same results, same side effects) #myth #HAchat

natasha_tracy: #myth – medication makes you slow or stupid or somehow less than you are. #hachat

Pamressler: #Myth 4: All diseases/illnesses are curable #HAchat

Natasha_tracy: #myth – mental illness isn’t real because there is no blood test for it. #hachat

Natasha_tracy: #myth – you can think your way out of a mental illness. #hachat

No_H_cristina “@wegohealth: M4: Just improve your diet & exercise-go outside & get some sun! -and youll be fine #myth #hachat” smile u’ll feel better, too

 

Truths about Conditions, Treatments and Care


MakeThisLookAwe: #Truth – #addiction from pain medications does not happen when the medications are taken according to the prescription #FDA #HAchat

PurdueMocha: There isn’t a “one size fits all” for any condition. Sometimes it takes a lot of experimentation. #truth #HAchat

Rlanzara: Every medical test has both false positives and negatives

wegohealth: “Getting better” is a process. It takes many steps. It is different for everyone. #truth #HAchat

natasha_tracy: #truth – many illnesses do not have or are not diagnosed by a specific test but they are still real #HAchat

NAMIMass: Most chronic illnesses are diagnosed by excluding all other illnesses with similar symptoms #truth #HAchat

Kimmiecollas: adding another med to handle side effects is not always the best option. Sometimes changing meds is the way to go. #HAchat

Myths about Social Media:

Wegohealth: Social media can’t make a difference in people’s lives because it’s not “real” #myth #HAchat

 

Truths about Social Media:

 

kimmieCollas: online communities are great places to find options and opinions, but you still need to do the research #HAchat

Crankypancreas: Online networks can be of great support when it comes to chronic illness, but you can’t rely solely on them. #HAchat

TiffanyAndLupus: #Truth Patient communities have the power to inform, educate, heal, and even save lives. (I’ve witnessed it many times over!) #HaChat

wegohealth: Blogs can be journalistic. Twitter help foster real connections. Facebook-you can be you-you. #truth #HAchat

Makethislookawe: Social networking can help us find the right #diagnosis, when we’re able compare notes with other patients who feel the same way #HAchat

wegohealth: Online relationships are legitimate. But they need care/attention just as offline ones do! #truth #HAchat

 

Keep in mind that any of these truths would be great for our Myths Mugshots Photo Contest, which closes next Monday, May 28th.  Feel free to use any of the above truths to take your photo, and to email us with any questions or concerns.  We are always here to help at community@wegohealth.com.

 

Be sure to tune in next week for a special chat on the DSM-V – and how diagnosis relates to identity.

 

 

 

 

 

 

 

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May 21st, 2012

This Week’s #HAchat: Myths about Social Media, e-Patients, and More!

by Amanda

In honor of our Myth Mugshot contest going on this week over on our Facebook page – we’re dedicating this week’s Health Activist Tweetchat to talking about myths… and truths.

 

Similar to our first chat of the month – which focused on defining a “myth,” discussing where myths comes from, and some of the most common myths we’ve heard about conditions – we’re going to step back and look at some bigger picture items. Let’s discuss myths and misconceptions about healthcare.

 

Join us at 3pm ET tomorrow (Tuesday May, 22nd) to discuss:

  • Myths about patients held by fellow patients
  • Myths about patients held by healthcare professions (HCPs and MD)
  • Myths e-patients in particular (empowered patients!)
  • Myths about MDs or other HCPs
  • Misconceptions about care, treatment, insurance, and medication
  • Misconceptions about social media (Facebook, Twitter, G+, Pinterest, blogs)
  • …And what’s truths, about each – that may surprise you!

 

We’ll be tweeting here: http://tweetchat.com/room/HAchat#

 

 

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May 15th, 2012

Highlighting a Health Activist Resource: CysticLife

by Susan

May is Cystic Fibrosis Awareness Month! You might remember that we recently brought together a handful of Cystic Fibrosis Health Activists to chat about the needs of their online community, the myths around CF, and more.  During our session, we heard that CFers deal with a lot of loneliness because they can’t interact with each other in real life.  This makes the online Cystic Fibrosis community even more active as they’re always looking for ways to connect with one another.  Enter CysticLife , an online community for CFers that was highly lauded by our Health Activist participants.  Always interested in connecting with other health communities, we reached out to CysticLife to get more information on their mission, the role they play for CF patients, and what other Health Activists should know.

 

Here’s what they shared with us:

 

Tell Health Activists a little about Cystic Life and the mission behind the community.


CysticLife is an organization that works to positively impact the Cystic Fibrosis community. CysticLife operates both online and offline. Online, our main focus is CysticLife.org, a social network for the CF community, and our social media channels, both Facebook and Twitter. Offline, we produce printed materials for patients and families that we distribute to CF Centers across the country; provide activity, medical, and educational grants to the CF community for CF-related expenses; provide a fitness coaching program, CFit, for CF patients; and work to raise awareness about CF in the general community.

 

What do you see as the biggest myth or misconception around Cystic Fibrosis that you’d like to correct?

Cystic Fibrosis (CF) is no longer a childhood disease. While this may have been true 20 years ago, it’s no longer true today. Nearly half of the people living with CF in the United States are over the age of 18. Also, according to the most recent data, many are graduating from college, have full-time careers and enjoying life with a spouse or live-in partner. That however does not mean that we can become comfortable with our fantastic progress so far. Until we have a cure, or until we as a community can expect to live a long and normal life, we must never stop raising awareness

 

What do you want Health Activists to know about Cystic Fibrosis?


Cystic Fibrosis (CF) is a “lifestyle disease”. Many people are under the impression that CF is a lung disease, but this however is not true. CF is a disease of the cells within our body. Because of a mutated gene our cells do not properly exchange sodium and chloride thus causing many issues within our lungs. This faulty exchange leads to a thick and sticky mucus build-up which then leads to infections which leads to inflammation which leads to more mucus build-up – it’s quite the cycle!! The lung is not the only organ impacted however. CF can negatively impact the pancreas, kidneys, liver, and skin as well as bones, joints, and ligaments. As you can see, the effects of CF are far-reaching and not just confined to the lungs. But why do we refer to it as a “lifestyle disease”? Simply put – it affects our lifestyle and the choices we make each and every day as well as the lives of those around us. Many CF patients spend up to 4 hours a day doing various treatments and activities that they would not be doing without this disease. When you devote nearly 30 hours a week to improve your health, we’d hardly call that “just a lung disease”! CF demands that we adjust our lives and devote much time to our health if we expect to live a “normal” life.

 

What awareness event, program, etc. would you like to share with the Health Activist community and their community members?


CysticLife is currently working on a short film, Living Xtreme: Beyond Cystic Fibrosis. The film, being co-produced by CysticLife, The Cystic Fibrosis Lifestyle Foundation and The Essential Image Source Foundation, will highlight the extreme hobbies and lifestyles of people with Cystic Fibrosis. Through this film, we will show members of the Cystic Fibrosis community, as well as the general public, how exciting, active, and rich life with Cystic Fibrosis can be. In addition, we are working on a full length documentary, which will build upon the short film. For more information, go to www.livingxtreme.org.

 

Thanks to Amanda Sharpe, Ronnie Sharpe, and the rest of the folks at CysticLife who shared this great information with us.  You can check them out at CysticLife.org or on Twitter @CysticLife!


 

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May 14th, 2012

May Mugshot Contest to Combat Myths, Misconceptions, & Stigma

by Amanda

The only real way to combat myths, misconceptions, & stigma is by raising awareness and sharing what is real: facts, stats, info, and narratives. This is exactly where Health Activists excel and align. No matter what your condition or health focus may be – you are dedicated to filling in the information gaps where stigma. That’s why we’ve excited to share our May Mugshot Contest.

 

So often, patients and caregivers are labeled (or at least feel labeled) by their health. Symptoms, diagnosis, treatment, and other things that go along with having (and fighting for) a health cause can open us up to judgment from others. But, at the end of the day, no one can label you – only you know yourself and what you’re going through. Only you know which myths are myths and which misconceptions are outdated, off, or just plain wrong. But instead of dwelling on these labels we so often hear – we’re doing something about it.

 

Let’s play off of that idea by sharing what is real, true, and correct – and labeling ourselves with that instead.

 

This week we’ll be sharing Myth Mugshots - where members of the WEGO Health team share one thing we think is true, important, and will affirm Health Activists and patients. Then, next week, we invite you to do the same. Share a picture of yourself holding up a piece of paper that tells your truth. Think of a common myth, misconception, or discouraging thought and reclaim it by writing down something true or a fact about you, your health condtion, health community, healthcare, or patients in general.
Now – share your photo! Add it to our Facebook wall and have your friends/followers “Like” it. The photo will the most “Likes” will get a feature on our blog, a highlight on our FB page, a feature in our June Newsletter, and a WEGO Health T-shirt (here’s what they look like).
Looking forward to your Mugshots and seeing your mugs as well as your truths. Feel free to invite your community members to make one as well. We’ll post our team Mugshots this week so you get the idea – and then you can start posting your pics next Monday, May 21st and having your friends “like” it. We’ll pick the winner on May 28th.

 

Check out some WEGO Health team Mugshots on our Facebook page »

 

 

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May 11th, 2012

#HAchat Recap: We all have mental health

by Caitlin

Image credit: lubaib on Flickr

May is full of month full of health observances. There’s Cystic Fibrosis, Lupus, Arthritis, Lyme Disease, Women’s Health week, Food Allergy, Celiac Disease, among others.  May is also Mental Health Awareness Month.  While Mental Health often gets boxed into its own category, it is intricately related to physical health and each and every condition.  How can we talk about fibromyalgia without discussing the impact that chronic pain has on mental health?  How can we discuss lupus or celiac disease without thinking about the way forced lifestyle changes impact your psyche?  Tuesday’s Health Activist chat was one of the most riveting chats that we’ve hosted at WEGO Health.  The number of Health Activists that came together across conditions to discuss the crossover between mental health and their condition demonstrates how pervasive mental health is and that it deserves more attention in the management of physical health.

 

What isn’t mental health?

amanda_stand Number one point here I think is ‘Mental health is something that EVERYONE has, just like physical health’. #hachat

amygdala_101 #hachat we all have mental health, it exists on a continuum, and moves up, down, and along that continuum.

 

Defining mental health is both straight-forward and complicated.  It is easy to come up with a definition – mental health is one’s level of emotional, psychological and cognitive wellbeing.  Mental health is closely related to anything that affects you psychologically, including mental illness and addiction. It involves your thoughts, feelings, attitudes, and compulsions.  However, the term mental health usually conjures up images of mental illness, including depression, schizophrenia, and bipolar disorder.  But like physical health, there is a difference between wellness and illness. Everyone has some state of mental health.  Myths, misconceptions and stigma abound — but mental health affects each and every one of us.

 

It is easy to see how important it is to maintain good mental health when looking at co-morbidities:  amygdala_101 if your emotional needs cannot be met due to physical illness, mi can easily follow..get needs met to avoid mi! #hachat. Many Health Activists discussed the ways that Mental Health intersects with their health conditions:

brownawell MH and physical health are so intertwined, especially a chronic condition or illness. Both (MH and PH) need support! #hachat

SLEYoungLeaders: With #lupus, the odds of you developing Depression & other mental health issues is high. Seeking a therapist for help is vital #HAchat

3lainess there is a lot of anxiety and depression in breast cancer, lots of anxiety with ADD, and lots of anxiety with body image issues #hachat

Dyverse_Steele yes almost everyone I know that has hiv/aids has had mental health issues from knowing they will be taking pills forever #hachat

running4autism I am an autism mom. Special needs parents have high statistical likelihood of depression. #hachat

CornMuffinsMama Pregnancy caused my hypothyroidism which caused the PPD.I talk all the time 2 ppl about the link between thyroid/PPD. #hachat

MakeThisLookAwe: I have hypomania, anxiety, and depressive episodes as part of the mechanism of my migraines. I also have #MedicalPTSD. #HAchat

FeliciaFibro By talking about how depression commonly overlaps #fibro & that it doesn’t mean #fibro is “all in your head.” #hachat

FightingCat @wegohealth T3 #MH *is* my condition. Talk about triangle with stress and sleep #HAchat

 

Top Myths and Misconceptions about Mental Health:

In line with our theme this month, here are some of the top myths and misconceptions surrounding mental health:

hotelqueen @wegohealth MI = “crazy” and depression = “just a little bit sad”. Misconceptions at both ends of the spectrum #HAchat

CornMuffinsMama It’s another HUGE misconception that PTSD is just for service members returning from combat. #hachat

MakeThisLookAwe One problem with mental health & physical health, a lot of doctors will start ignoring physical symptoms once a dx of MI is given #HAchat

@CornMuffinsMama It’s also important to remember that there is no hierarchy of “better” or “worse” mental illness #HAchat

MakeThisLookAwe There needs to be less #stigma around #medication. Taking a pill to help how you feel & function does not mean you’re broken. #HAchat

researchgirlca: MI is but a piece of our lives, our communities. We are whole people with interests, etc. #HAchat

 

Why is everyone afraid to talk about mental health?

CornMuffinsMama Many people dont realize the connection between MH and physical health. They also don’t recognize MH issues as legit #hachat

The aforementioned myths, misconceptions and stigma prevent many from sharing their struggles with mental illness.  Even with all of these Health Activists coming out and saying how closely related mental health issues are to their other health conditions; there is still a reluctance to be open about dealing with them.  natasha_tracy Historically, mental illness was seen as a demonic force and later as a character/moral failing and that sentiment still lingers. #hachat. People are embarrassed.   Many Health Activists share very personal details about their bodies, their lives and the lives of their families are still hesitant to talk about their mental health:  running4autism I’ve been silent about it bc I do feel the stigma. Wrongly I know, I feel ashamed of my conditions. #HAchat. Others have chosen to discuss their mental health more privately, such as in closed Facebook groups.

The fact that Mental Illness is invisible makes many hesitant to open up about it. Not only is there a tendency for people to not believe in something that they cannot see, there is the added fear and stigma surrounding what Mental Illness “looks like” according to stories and mass media. Mental health shares many of the same misconceptions as other invisible illnesses. running4autism: MI is invisible, therefore ppl don’t think it’s real. We’re making it up! #hachat .You may not necessarily look sick, so others may think that you’re faking or exaggerating.  However, even with physical illness there isn’t the same explanation needed, or the same fear.  FightingCat Feel need to explain what/why to others. Don’t have to explain why with a physical illness #HAchat. According to CornMuffinsMama, Christianity adds another layer of stigma: CornMuffinsMama: within Christianity, it’s still often seen as a spiritual failing if someone has a MH issue. “U need 2 pray more” “Must b sin” #hachat. This sentiment of “you need to pray more” is quite similar to “you’re just sad, cheer up!”

 

Fear of blame and judgment also prevent people from opening up about mental health.  As in many other conditions, those outside of the mental health community like to play the blame game.  The myth that people living with mental illness must have done something to deserve their affliction is all too common and just as difficult to correct.  CornMuffinsMama The stigma is that you’re doing something wrong, you’ve somehow failed, you are less of a person, you’re “crazy“ #hachat.  People want to believe this myth because they are afraid.  Mental illness and the brain specifically are not well understood even within the scientific community, and blame makes it easier for a person to say – that won’t happen to me.  natasha_tracy “crazy” is just fear misspelled.#hachat

 

All of these factors combined mean that those with mental illness may not seek the help they need. It is important to remember that even if you’re not comfortable discussing your mental health with family and friends, there is nothing wrong with seeking help.  SLEYoungLeaders: It’s important to remember that seeking help for Mental Health issues like Depression are OKAY. It’s the RIGHT thing to do! #HAchat

 

How do we open up a dialogue around mental health and mental illness?

researchgirlca: I think we need to do away with the idea of mind/body. health is health. #HAchat

 

As always, the question becomes: how do we combat these myths? How do we get people to open up a dialogue surrounding mental health and mental illness?  As with many other health conditions, the key to combatting stigma is education.  We need to promote a more active dialogue about mental health.  Encourage others to seek help if they need it.  We need to take a more integrative approach to care and stop separating the mind and body into different categories.  Health Activists can lead the way by bringing mental health into their own writing and discussions with their community members.

natasha_tracy Stigma is combated by standing up and talking about reality. Knowledge dispels fear and thus stigma.

SLEYoungLeaders: As Health Activists we should talk freely, openly, and non-judgmentally about Mental Health & how to seek help if needed. #HAchat

pamressler: By integrating quality MH care into comprehensive care for any chronic condition would be a good start #hachat

julianna12369 Final Thoughts: What we talk about and shine a light on cannot stay stigmatized for long. Mental Health is everyone’s health! #HAchat

 

In order to begin a constructive conversation about mental health, you have to stop feeling guilty, stop blaming yourself, stop apologizing! Mental illness is no one’s fault, whether it resulted from trauma or from chemical imbalances in your brain.  You have to stop blaming yourself.  Blaming yourself only makes it easier for others to blame you.  Stop fearing judgment and do what you need to do in order to take care of yourself. Learn what taking care of yourself really means.

SLEYoungLeaders RT @wegohealth: I think many of us feel “guilty” for feeling “down” in some way. That is a tough thing to get past. #HAchat

julianna12369 @wegohealth I have been bipolar for over 25 years and I still apologize for longer depressive episodes. I have to stop doing that. #HAchat

MakeThisLookAwe We don’t judge someone for using crutches or insulin, but #headmeds are somehow a sign of being deficient or deformed… #stigma #HAchat –

 

Finally, remember that you’re not alone.  No matter the differences between each individual’s health, mental health is something that we all have in common.  As this chat demonstrated, there are countless others going through the same thing that you are, it’s just a matter of reaching out to find the help and support you need.  If the WEGO Health community is any indication of the support available in the online health community, we can safely say that the help you need is out there.

SLEYoungLeaders Final Thoughts: You’re not alone with issues on Mental Health/Illness. Seek help, encouragement, and information to better yourself. #HAchat

What is your community doing to encourage discussion of mental health and mental illness? Where do you turn to for support?  Share your thoughts by emailing us at editorial@wegohealth.com. Tune in next week for another special #HAChat in honor of National Women’s Health Week. Tuesdays, 3 PM EST.


 

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