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!
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.
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.
Self-Image and Perceived Identity
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.
What’s your label?
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
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
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.
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 firstname.lastname@example.org 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!
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
“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:
Want to participate in an upcoming Health Activist Roundtable? Sign up here: Health Activist Roundtable
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!
To wrap-up our month of identifying, confronting, and correcting myths – today’s chat will center around the idea of identity. Last week we got literal: sharing myths and truths about ourselves as patients, e-patients, and Health Activists. Let’s continue with that idea – but get a bit more philosophical.
Who are you? What comprises you as a person? As a patient? As a leader?
Join us at 3pm ET to discuss the following:
– How do people’s health condition(s) play into how they see themselves?
– What’s the difference between how you see yourself pre-diagnosis and post-diagnosis?
– Does a title (definitive diagnosis) make a difference? How?
– How does a diagnosis play into how others see you?
– What tips do you have for someone who is coming to terms with themselves as a patient?
– Is there such a thing as “finding yourself”? If yes – what does it mean? If no – why not?
– How can we work together to make newly diagnosed patients feel comfortable no matter who they are?
We’ll be tweeting over in our Tweetchat Room: http://tweetchat.com/room/HAchat#
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:
Want to participate in an upcoming Health Activist Roundtable? Sign up here: Health Activist Roundtable
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:
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
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
Myths about ePatients
Truths about ePatients
CIRants: We work hard to learn as much as we can to improve our health as much as possible. #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
Truths about Doctors and Healthcare Professionals
Eczemasupport: Truth: it takes time in a consultation and trust to enable an equal partnership between patient and doctor #HAChat
Myths about Conditions and Treatments
Truths about Conditions, Treatments and Care
Rlanzara: Every medical test has both false positives and negatives
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:
Truths about Social Media:
Crankypancreas: Online networks can be of great support when it comes to chronic illness, but you can’t rely solely on them. #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 email@example.com.
Be sure to tune in next week for a special chat on the DSM-V – and how diagnosis relates to identity.
Did you know that last week marked 2012’s Food Allergy Awareness Week? To honor the week, and to help Food Allergy Health Activists to raise awareness, WEGO Health held a Health Activist Roundtable with active members of the community. We learned a ton from these dedicated Health Activists and know you will too.
Here’s what we heard:
“There’s a lot of conversation around what we cannot eat. It’s very much an ‘anti’ conversation. I’d like to see more discussion about what we can do – about what a healthy diet and healthy living can do to help us with our food allergies.”
“I see a lot of new parents or parents of newly diagnosed children in my community. They’re reasonably scared and anxious about what that means for them and their children. It’s important to be there for them and to be kind to them. They need to see that they can protect their children without being overprotective and that their kid will be okay and will lead a long life.”
“There needs to be more education for people who don’t have food allergies. People don’t mean to be harmful but they can be. People need to understand that food allergies are serious and can be fatal.”
“Food allergies can be expensive. There are emergency room visits, specialty foods, epi pens, etc. There needs to be more support for lower income and minority families dealing with food allergies and more information about what can or cannot be covered.”
We often discuss the idea of “becoming a Health Activist” and how patients (and caregivers) go from empowered to advocating. That journey, itself, is unique to the individual but still has things in common across the board — and noting and drawing upon those commonalities is a great way to perhaps inspire others to become Health Activists, too. One of the ideas we’ve mentioned frequently is the concept of a Health Activist Mentorship program – where a more seasoned Health Activist would offer ideas, advise, and feedback to inspire someone who’s just starting off into the world of online health leadership. It’s a really great idea and, when I came across Julianna’s feature on her blog What The Jules called the “Blogger in Residency Program” – it was a true light bulb moment. I couldn’t help but see it as a real incarnation of that Mentorship. I contacted Jules to hear more about the program because I think it could be something that other Health Activists can bring back to their blogs and try as well. Here’s what we discussed:
What is your Blogger in Residency Program?
Jules: The Blogger in Residency Program is a chance for new bloggers (or bloggers who have not found a way to really get their blogs to “take off”) a chance to get their feet wet in the blogging world without worrying about the tedium that setting up a blog can require.
I have found that some people want to start a blog, and when there is a bit of fear in putting ones self out there, any roadblock will put a halt to the process. That tends to be human nature, but when we are talking about a blog in which we are going to expose our inner self to the public, we are more susceptible to accepting a roadblock and not moving forward.
The Blogger in Residency Program removes the roadblocks. The program takes this one step further and provides the new blogger with a mentor as well. If you can’t come up with topics, your mentor is there to help you. If you can’t find that unique voice for your blog, your mentor is there.
The Blogger In Residency program is more then just some space on a website, it’s about providing a safe place to create and grow as a writer for a month, to learn the ins and outs of blogging from writing and posting, to marketing.
Where did the idea come from?
Jules: I am a big music fan, and have been my whole life. Also, I have followed art to some degree. In both of these areas, residency programs are common. There are music venues that I enjoy that have musician residency programs that take in bands or solo artists for a period of time and give them a home to create and to play. Most specifically, I was inspired by the Hotel Cafe Residency: https://www.facebook.com/thehotelcafe and https://www.hotelcafe.com/
If bands can get residency, why can’t writers? And specifically, bloggers? It is even easier for us! The space is easier to come by and there are so many niches in health blogging that need to be filled.
This also goes hand in hand with three blog communities I am building. By developing bloggers with good skills, I can feed my communities if these bloggers fit the needs, and they wish to continue the work.
How do you choose who will be your Blogger in Residency?
Jules: Application to the Blogger in Residency Program is not rigorous. Other than my potential future need for a kidney, this is really about desire to write, and the excitement for the program.
I have a basic call to writers on the first page of my Blogger In Residency Program:
The Blogger In Residency program allows a new blogger, that may not have web space or resources to start a blog, with space to publish for a month without sacrificing creativity while making technical decisions. Or, someone just getting started that wants a mentor and a chance to get feedback from you, the Chronically Awesome community.
I hope you will read and comment on our Blogger in Residency posts. If you are interested in working with the blog team at WhatTheJules, and want to be a Blogger In Residency, please email firstname.lastname@example.org and tell us about yourself.
Neither April or May have been selected by this process. The April blogger, Kat (Alice in Chron’sLand) was chosen because she wanted to do the HAWMC for Wego and did not have a blog space, and also needed some guidance because she had not blogged before. I offered her both. This was when I got the idea.
My May blogger was hand selected. I was sitting with my friend Amanda (@lalupuslady) getting ready to do the #friendsofricki chat, and prepping for my PodCast “Chronic Chronicles” and we were looking at the different gifts that Chronically Awesome followers had sent me over the last couple of years. I showed Amanda a card sent to me by Kelli Clark (@kelsoopadoo) and also a photo she had put on instagram that was tagged for me.
That sent us to her blog and we loved it. We started tweeting it to our TL, but noticed she had not written a new entry in so long. I thought perhaps she needed some inspiration and some mentoring. She is young, in high school, and this excited me. I wanted to see her grow as a blogger and perhaps contribute to my WhatTheJules blogging team. If she could grow her own blog and on occasion send me a post, she could really make a name for herself and help a segment of the Chronically Awesome community that does not get enough attention.
I approached her with the idea and she loved it. And what I loved was that she had to get back to me to sort out the details because, she had PROM!!!! PERFECT!
I have a whole month now to work with her, to help Alice with marketing her new blog, and to find a June blogger.
What tips do you have for other seasoned bloggers who may want to start their own Blogger In Residency program?
Jules: I learned so much my first month. It was a blessing and a curse that the first month that I did this was HAWMC. It was exhausting.
1. Have a plan. Know how you are going to publish your blogger’s posts. Have this well developed before you start. Are you going to let them have access to your site to publish for themselves, or are you going to do it for them? I published Alice’s posts for her. My site is not a wordpress or blog focused site, it is a regular website. I did not want to confuse the issue. I knew Alice/Kat would be going on to publish her future blog in Tumblr and learning to use my site back end would only be a distraction. You have to consider these things.
This meant extra work for me. During HAWMC I was posting two posts a day.
2. Remember that you are a mentor, you are not writing the blog for them. There is a difference between proofing and editing and removing the creative choices they have made.
3. Do not leave your blogger stranded in the woods of the internet. Check in with your blogger daily, just ask them how they are doing. When they seem lost, give them your hand, give them tips about coming up with topics, or how to deal with writers block. Get to know them and their health focus so that you can help them over the hump. Text, email, DM, use whatever means of communication works best.
4. Market your bloggers blog along with your own. When you tweet your post, tweet theirs. When you put yours on Facebook, Google+, Tumblr, wherever you send your links, send theirs. Be a role model of blog marketing, and show them what you have done so they can do the same.
5. Ease them into the transition. I have asked my webmaster to create an interface to my site that will allow my bloggers to post their own blogs to the site through the front end of the blog. I will always have my blogger in residency send me the first few blogs directly so I can go over them and help them with choices they have made, but then they will post on their own. I can’t kill myself over the time it took like I did last month.
6. Build the relationship. You will mentor your blogger with advice that is unique to you and the way you blog, that is for you to decide. Whatever that advice is, start your relationship with that conversation. Start with that talk. Tell your blogger about how to find the voice that will make them a success, that will make them the best blogger you believe they can be.
Any other insight into running a blog that might be helpful to fellow health bloggers?
Jules: So, I came to this very different world of Chronically Awesomeness (Chronic Illness) after 15 years in software. I was Vice President of Marketing for a software company. When I found myself at home and a consultant, the only thing I was still consistently doing was writing. I still live in my old world as a magazine columnist, technical writer, and I provide social media to a few companies (including the one I was VP for) in my “old life”. Now I am finding this life, and the gift my illness has given me, the gift of a voice for my community and the love for and of my community so much more rewarding. I had to become broken to feel whole.
Here is how I keep my Chronically Awesome Community running. It’s not a small thing, but it runs like a well oiled machine – we are happy even though we are sick. We are positive and we live daily to find the gifts that we have been given in this new life of illness. We find the awesome in everything. It sounds nuts, but we do it. You wouldn’t believe how many people have turned away from the negative of counting the diminishing energy points and learned that when you do something as a sick person, you should earn and be given credit for your awesomeness. It’s about teamwork. No one can navigate this path alone. WhenI says we, I can’t manage posting all of these blogs alone, Karen Vasquez (@karenovasquez) of WalkForCure the California Scleroderma Chapter (@walkforcure) helps me manage the blog portal: http://www.facebook.com/chronicallyawesomebloggers. And my weekly chronic illness “Chronically Awesome” PodCast http://www.facebook.com/chronicchronicles @chroniclepod http://www.talkshoe.com/tc/117602 is co-hosted by Gini Briggs (@growingthrupain) and Donna Kay (@healthierstay)
Thanks so much to Jules for sharing her great idea with us. Hopefully you found the information helpful and will consider taking a new blogger under your wing in a mentorship-style residency. It could be a great way for you to branch out in your advocacy – and take some of the weight off of yourself as a blogger when it comes to content-creation and writing schedules. It gives you the opportunity to try a new angle – that of Editor – and expand your mission. If you don’t already – be sure to follow Jules over at her blog What The Jules, on Twitter @julianna12369 on Facebook and Google+.
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#