Archive for February 16th, 2012

February 16th, 2012

Meet the HAAwards Finalists: Wendy Holcombe

by Amanda

I’d like to introduce you to TMI Award Finalist, and Health Activist – Wendy Holcombe! Wendy is a Chronic Illness Health Activist who blogs over at Picnic With Ants. Nominated for her honest approach to blogging, Wendy chronicles all her “ants” (chronic illnesses) with a unique voice that really resonates with her readers. She openly commits to telling “some of the most embarrassing and scary moments” that come into her life and is determined to “break down the 4th wall.” Her approach helps make invisible illness not-so-invisible. Her readers (and nominators in particular) love her blog because she describes things that they, too, experience but may be too shy to say it. Her artistic flair has also been known to inspire (check out her art here and her Create To Heal blog here). Wendy’s candid approach (and humor) inspires many and I’m so happy to have learned of her blog through the HAAwards. Now – let’s learn more about Wendy in her own words…

 

How/why did you become a Health Activist?  Tell us your Health Activist story!


After being misdiagnosed with different disorders/illnesses I realized I needed to be a better health advocate for myself.  I couldn’t put all my faith in the doctors to figure out what is going on with my body.  No one knows my body better than me.
Becoming a better health advocate for myself led to my wanting to help others learn to speak for themselves.  To know more about their illnesses.  I reached out.  I started a support group, for a disorder I later found out I don’t have, it was very successful.  I may not be involved any longer, but I’m happy to say the group is still going strong approximately 9 years since I founded it.  I also made some life long friends from my time with this group.  One thing I really took away from this group, most people feel alone in their struggles.  It was then that I decided I would always be available to anyone who needs to feel like they aren’t quite so alone.


I have a number of chronic illnesses.  With each new diagnosis I would dive in trying to find out as much information as possible.  Again, meeting new people who felt they were so alone.

I was diagnosed with Meniere’s disease years ago.  Meniere’s disease is a vestibular disorder causing fluctuating tinnitus, aural fullness, sudden and severe attacks of vertigo, and fluctuating hearing loss often leading to complete hearing loss.  Meniere’s is progressive, some progress more than others.  I’m in the advanced stage. In late 2009 Meniere’s took over my life.  Before then I only had it in my right ear, in 2009 it started to effect my left ear.  Early in 2010 I started a new blog, Picnic with Ants, detailing my journey living with chronic illnesses, and determined to live the most productive, healthy, and happy life possible.
Since that time, my blog has mostly been about living with Meniere’s disease.  I talk about the good, the bad, and the very ugly.  I also talk about my other illnesses, but I will admit for the past few years Meniere’s has ruled my life.

My blog is very honest, and forthcoming.  I’ve found that people do not understand just what goes on with most chronic illnesses.  This causes many people to feel alone, even though they’ve met others who have the same illness.  We do not talk about what goes on behind closed doors.  How our illnesses destroy many aspects of our lives, and how we can deal with that.  I’m trying to open those doors and help people realize it’s alright to talk about the nitty gritty ugly details.  If it helps one person feel less alone, it has been worth all the embarrassing stories I tell.  I’ve also found that others who read these post who do not have the certain illness, like Meniere’s, or may know someone with the illness, can finally understand what we go through.  After writing a very detailed post about a vertigo attack, one reader stated, “This is the most terrifying thing I’ve ever read.”  This reader has many issues of her own, when I read this comment, I cried.  I felt validated.  This one person understands now, I hope other’s do, but just knowing one person understands means I will continue to write about it, until I can reach another and another….

To summarize, there are 3 main reasons I’m a health activist, to help people realize they are not alone, to help people understand they must be an advocate for themselves, and to help people understand more about the details behind certain illnesses.  


What are your goals for 2012? Anything you’re really looking forward to?

Personally, I’m looking forward to having less vertigo.  I had surgery on my left ear in December, I had the same surgery on my right ear in 2010.  This surgery should reduce the vertigo by 70 – 90%.  After being mostly bed bound for nearly 6 months in 2011, because of daily vertigo, I am looking forward to doing things.  I want to continue my promise that I will never take a good day for granted.  Everyday I feel well enough to do things I will take advantage of every moment.  

My goals for being a better Health Activist in 2012:


I want to reach more people, help them learn more about certain illnesses, support those who feel alone, and (perhaps most importantly) help people accept their chronic illness and feel more positive about their future.  This last point was a very hard one for me to come to terms with, I hope I can help others do the same.  Including encouraging them to seek professional help to deal with the loss of independence.

I also want to give back to the caregivers.  To acknowledge them and hear their stories, how we can help them and let them know how very important they are.

Due to Meniere’s I’ve lost the majority of my hearing.  I plan to be more active in the deaf community, learn ASL (American Sign Language) and help others who are losing their hearing later in life.  

If my health permits I hope to attend conferences for health activist, and one specific conference for the deaf and hard of hearing.

As I often say on my blog, My life may not be what I expected, so I will change my expectations.  One day at a time.  For example:

When I was confined to my bed I tried hard to be as productive as possible, through the vertigo attacks and the migraines.  I started a second blog called Create to Heal, all about how creating can help you feel better.  Accomplishing just a small thing, can make the day seem worth while.  I’d like to further this venture.  Trying to create something every day, even if I didn’t complete it in one day, it made me feel more productive than I have in a very long time.

 

Be sure to follow Wendy’s work (if you don’t already) and “meet” her through the web on Picnic With Ants her TMI-nominated blog, her art healing blog Create to Heal, on Facebook, and Twitter.

 

February 16th, 2012

Talking to Strangers: A Health Activist Perspective

by Amanda

Today we have an important post on a little-discussed topic in our Health Activist community – but one that bears discussing: the darker side of having an online presence – creeps. By putting ourselves out there, online, we open ourselves (and our lives) up to those we seek to connect with. It’s one of the most integral parts of being a Health Activist – providing that genuine face-to-the-name and helps raise awareness and creates relationships between members of your particular patient community. However, just as in real life – and maybe even more so – creeps exist online. People who want to derail the conversation by being inappropriate, commenting on you physically, or simply trolling in an uncomfortable way. Have you run into instances where you felt harassed? We know that most Health Activists are women – some of whom are quite lovely – and unfortunately many people feel it is their place to comment on that. It can be incredibly frustrating and sometimes, down right scary. Today’s post is written by IBD Health Activist Sara Ringer, of Inflamed and Untamed, who has experienced this (especially due to her vlogging). I hope you enjoy the post and think about bringing this conversation up in your health communities. Sara offers some great tips you can share. –Amanda

 

 

Talking to Strangers: A Health Activist Perspective

by Sara Ringer

 

I was always taught not to talk to strangers and here I am talking to thousands of them!

Being a Health Activist means putting yourself out there.  We open up about our weaknesses, strengths, things that make us LOL, and all sorts of things that make us vulnerable with the goal of helping others who struggle with our condition.  Putting yourself out there is a great thing, you are helping many people by sharing your experiences.  Your readers can see themselves in the things you share and in turn they feel a kind of bond and closeness to you.  But how close it too close?

 

I’ve received a lot of wonderful feedback from people who follow my blog and YouTube channel.  Hearing those things are the things that keep me doing what I do.  But I also receive a lot of feedback that is down right creepy and sometimes scary.  A lot of this has come from video blogging.  Not only are you sharing stories and being vulnerable, but you are doing so in front of a camera.  This adds a whole new relationship between you and your community.  They see you right there in front of them, talking to them.  They know what your living room looks like, they know what YOU look like, and after watching your videos they start to feel like they know you too. I imagine this is what celebrities deal with but on a much smaller scale.  People become obsessed with people they don’t even know.

 

Sharing my thoughts and experiences through blogging and video blogging has been almost nothing but a good thing. It has widened my audience and allows me to get things out there in a much more personal way.  But I have also had guys who have told me they love me.  I have guys who follow me on every one of my social networking sites and never fail to throw in a creepy comment about how much they adore me.  I have had random guys who have found me on YouTube write very vulgar things or followers who ask me for my phone number.  The list goes on…

 

So what do you do to protect yourself?


  • Emily from chroniccurve.tumblr.com writes ” I make a point not to create online relationships. By that I mean skype, personal friendships, exchanging addresses or numbers, that type of contact. Why? Because there is no way to know who is truly sitting on the other side of the screen.” She makes a very good point.  You want to be there as much as you can for your audience but you have to know where to draw the line.

 

  • If you encourage your readers to email you, set up a different email account. I learned the hard way to not share my personal email address with my readers.  Recently a very mentally unstable and unhappy person came across my blog and didn’t like what I had to say.  He started emailing me hateful messages numerous times a day and would change his email address so he couldn’t be blocked.  I wasn’t the only one in the community he was threatening but I learned quickly to not share my personal email address.

 

  • Use caution: You might feel after talking to someone for awhile that you know the person and that they can be trusted, thus offering up information about yourself you normally wouldn’t.  This brings us back to “there is no way to know who is truly sitting on the other end of the screen.”

 

  • Know when not to respond. I try to respond to everyone but there are certain things I do not respond to. If it is inappropriate or creepy I usually pass it up.

 

  • Keep in mind the internet is full of all sorts of people. Not everyone is mentally stable, “creepers” do exist, and not everyone can be trusted.

 

Overall you just have to use your best judgement. There have been times when I’ve offered up my phone number or sent out a care package.  I have created some of my best friendships through being a Health Activist. You just have to be careful.   As Health Activists we are passionate about what we do and we want to create a community that is open and safe for everyone. You don’t have to talk on the phone, skype, or send things via snail mail to create meaningful relationships with your audience. With facebook pages, twitter, message boards, and email there are plenty of ways to create relationships with people and offer support in a safe way.