“As a health activist community we need to continue our fight! People are starting to listen and our voice is starting to bring about change.”
A powerful, but exciting and true statement, especially from CRPS/RSD health advocate Ross McCreery, who works endlessly to make a difference.
When Ross failed to find the help he needed to diagnose and treat his CRPS, he started sharing his own journey with others. This, in turn, sparked a passion to help others who were fighting similar battles, but mostly prompted a need to educate and raise awareness for this rare condition. As Ross continued to network he found his voice by realizing that he “didn’t want to just sit around waiting for things to happen. I wanted to make whatever difference I could no matter how big or small. I just decided to put myself out there and jump in with both feet.”
And oh did he jump! Frustrated from the doctors, physicians and government not really understanding his illness, he decided to do some research into his Provincial and Federal Health Care just last year. Unfortunately, his research revealed just how little was being done in research and care for those affected by CRPS. So it became Ross’s mission to raise awareness and bring change: addressing the lack of education and expertise needed to diagnose and treat individuals with CRPS, and working with the government to make sure it recognizes chronic illness for what it really is.
With his advocacy, he hopes to see more funding and research going into finding the cures for his illnesses. He also hopes his efforts will improve the interaction between patients, healthcare and the government. Ross recognizes that chronically ill patients are often told that their issue is “all in their head” which can invalidate the patient’s voice, but he refuses to sit back and let the injustice continue. Ross has sent letters to the Premiere, Health Minister and other officials in an effort to make this change an important initiative.
Fortunately, his impressive efforts have brought great success! Ross contacted his Provincial Government and was successful in having a CRPS Awareness Day for the Province of Saskatchewan. Ross plans to hold an event on this day with goal of not only raising awareness, but also raising funds for research and education. He hopes that one day, CRPS Awareness Day will become nationally in Canada!
If you’re not already feeling completely and utterly inspired from what Ross has accomplished, consider this recent quote from the outstanding advocate himself: “…you can’t make a difference if you’re sitting on the sidelines waiting for things to happen.” Instead, he advises us to find the courage within yourself to take action and “…believe in yourself and know that you can make a difference.”
Ross is clearly an advocate to admire and he definitely deserves the support and respect of the online health community, so head over to Ross’s blog and make sure to follow his twitter and Facebook account in order to stay up to date with CRPS Awareness Day!
Kristen Long is the Health Activist Awards Coordinator at WEGO Health. Her own health experiences have inspired her to empower other patients and encourage the power of patient advocacy. Follow Kristen onTwitter andFacebook.
Here is Part Two of my interview with Katie Schwartz, founder of Dear Thyroid. (Click here to read Part One)
Amanda: Dear Thyroid is a different kind of health community and it says so right in the first line of the About page. What made you decide to bring your crusade online?
Katie Schwartz: Being a writer, I have an ongoing love affair with words. I believe that each person (when they are ready) must tell their story in their own words. Our slogan is “Healing our thyroids one letter at a time”. We mean that literally and metaphorically. Write and submit as many letters as it takes. Join our conversations in comments, and on our chat boards.
If we don’t tell our stories, we are doing our respective diseases a huge disservice. We learn from each other. (By we, I mean the collective we.) We tell the medical community what’s not working. We bridge the gap between families and patients. We experience a degree of healing through the realization that someone else has gone through exactly what we have.
To quote Joanna Isbill “Dear Thyroid™ is changing the way we talk about thyroid disease and cancer. We are starting a new conversation using YOUR words.”
Words are the key to all doors, in my opinion. Our community has written hundreds of thousands of powerful words, humorously, irreverently, angrily, sadly and happily. And always, always honestly.
A: What inspired you to create this unique community?
KS: Providing a literary outlet for our community to come together, and write their story on their terms, in as many ways as they wish. That and a desperate, burning passion for change. We deserve better. Too many doctors treat thyroid disease like a ‘no brainer’, akin to the flu. We empower each other, to become our own patient advocates, to change the way we communicate with our doctors, our families, our friends and each other. We have guest bloggers, some are doctors, others are health advocates, or nutrition experts.
@BigGirlFeats said the best thing I’ve heard in a long time regarding thyroid cancer “That it’s an “easy” cancer it’s the best kind!” She went on to say “Ok, than YOU take it for me!!”
How dare any doctor tell patients how lucky they are to have this fabulous cancer?! Package it in a Tiffany box; Cancer is cancer, is cancer. Period!
Too many doctors marginalize thyroid autoimmune diseases. They barely explain what it is or what it does. Few of us walk out of the doctor’s office knowing what a thyroid is, even AFTER diagnosis! If left untreated or mistreated, this disease can kill you. Over 59MM people have a thyroid condition and over 20MM don’t know it. This is a pandemic issue with little funding, awareness or education. Most people don’t know where their thyroid is located, much less the power it has over a person’s mind and body. Become your own patient advocate. We provide a lot of resources.
As a few of our community members said: “Treat the patient, not the chart!” (Jill) “Why must I fight for normality?” (Amy). “Thyroid disease leads to brain drain” (Bonnie). “Wading through this crap to live!” (Linda).
That and more inspires the drive to do more, more, more.
A: What has been your proudest moment as a health activist?
KS: There have been so many. One that I recall off the top of my head was with a woman who wanted support, but wasn’t ready to write a letter. I asked her if she’d be comfortable emailing with me. She was. Over the course of a few months, on her own, she submitted a letter. I was so proud of her because I knew what a challenge it was for her to share that letter. We chatted during the entire process, from the moment it was published and while she was receiving comments. At the end of the day, she said “I found my voice.” She added that she’d never felt the level of support that she received from our community and how indescribable the experience was. She doesn’t know this, but I sobbed tears of joy for her.
A: The most challenging one?
KS: In the beginning a few folks took umbrage with the uncensored language, lack of religion and pin-ups that we pair with each literary piece. My goal was to engage, and make sure they understood why I made those choices for the brand, not to change their minds. I wanted them to feel heard because I did hear them. What was so great was that a few of those folks ultimately became community members. They understood, on a very deep level why Dear Thyroid was different and how that difference might be of value to them.
A: What do you wish the general public knew about the thyroid and thyroid conditions?
KS: Thyroid conditions are not an excuse to be fat! Conversely, people who look anorectic might have a thyroid condition. Stop assuming. Thyroid diseases and thyroid cancers are very serious health issues, psychiatrically and physically. Thyroid disease and thyroid cancer can kill you. Treat people the way you want to be treated. Don’t judge and don’t mock a disease you know nothing about. Think about what you want to say before saying it.
PLEASE check your neck. Request a full thyroid function blood panel. Look up the symptoms of thyroid diseases and thyroid cancers, and if you think you have a thyroid condition, run like a dog to an endocrinologist. Oh, and for those who think this is an easy fix or an inexpensive disease to treat. WRONG. This disease is very costly.
A: What do you do when you’re not advocating?
KS: Writing, rinse and repeat. I’m also reinventing myself. Reading – I’m a Beat Literature junky. Collecting – vintage tchotchkes and perfumes. Rebuilding – relationships. Adding new cards to my “Guilt Rolodex” and maintaining a high level of neuroses.
It’s a brand new year, what is in store for the future Dear Thyroid and thyroid awareness overall? We are SO EXCITED ABOUT THIS YEAR! All caps and an exclamation point, word! New partnerships are in the mix, becoming a fully fledged non-profit, launching our family outreach and support program, and doing everything we can to continue our unique approach to awareness, education and support.
Thank you so much for taking the time to interview Dear Thyroid. We very much appreciate WeGoHealth.com and the good work you do.
Special thanks to Katie for sharing her story with me. I eagerly await more of her impending advocacy endeavors and hope to be able to feature more of her and her community’s work on the blog!
Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now:
In honor of January’s Thyroid Awareness Month, I had the awesome opportunity to interview Katie Schwartz, Health Activist mastermind behind the community Dear Thyroid™. Like her community, Katie is fiercely dedicated to being honest and real about life and thyroid conditions. Her responses to my questions are saturated with rich, fun language, likely due to her background as a comedy writer and fellow lover of words. In addition to being well-spoken, Katie takes a fresh approach to advocacy that is both light-hearted and content-centric. (Perhaps it’s no surprise why I’m such a fan!) Personally, I connected immediately with Dear Thyroid’s mission statement and their literary focus. It doesn’t take long to see why this community is special and why it has engaged so many. A self-proclaimed “pushy broad,” you can expect many more great things from Katie and her community in the future.
Amanda: I’m so excited to be chatting with you today Katie! Thanks so much for taking the time out to share with our community.
Katie Schwartz: Me too, Amanda! You’re passion and enthusiasm for health advocacy and WEGOHealth.com is infectious. LOVE IT, GIRL. Thanks so much for your time and the opportunity to talk about Dear Thyroid™
A: First off – tell us a little bit about your background and why you became an advocate for thyroid diseases and thyroid cancers.
KS: I’m a comedy writer. Life, pre-sickness, was fantastic. I appreciated my life, family, friends, and valued time; mine and others. I knew who I was and where I came from. I didn’t need an internal or external makeover. I didn’t need a disease to teach me anything. Suffice it to say, I don’t believe that we create disease or invite it into our lives. Disease just is. When it happens, life as you know it is forever changed, for yourself, your family and friends.
Though I was diagnosed with Graves’ and Graves’ eye disease 4 years ago, I’ve had it for at least 10-years. Unbeknownst to me, it was genetic.
Unfortunately, I almost died from thyrotoxicosis and thyroid psychoses. My mother and sister intervened to save my life.
Upon diagnosis, I wrote scathing hate letters to my thyroid. I wondered if anyone wanted to write one too. One day, I launched a blog and invited other thyroid patients to write and submit letters to their thyroids. Within a few months, a brand, a website and a community were born.
As letters poured in from patients and survivors; I realized that elements of my story kept reflecting back to me in various degrees. Multiple misdiagnoses, mistreatment and neglect were as normal as brushing your teeth in the morning. The more I read the more heartbroken and enraged I became. These exquisite, brave and wonderful women, men and young adults had rich, full lives that were ripped away from them without forewarning or consent. Their courage to keep fighting and sharing their stories was the impetus for my unwavering determination to be part of the movement that invokes change for thyroid patients. That and I am a pushy broad. So, I’m not giving up.
A: What made you get involved in the first place?
KS: I was frustrated. I wanted to know exactly what other patients were going through, in their words. I wanted the uninterrupted, uncensored grit. I didn’t want anything sugar coated. I was frustrated by the lack of spinning and spiraling. I thought, certainly others feel this way too, right? Anger seemed to be taboo. Not that anger is an aphrodisiac or anything; I just refused to believe that I was the only one who felt angry about my disease.
Save religion and politics, anything goes on Dear Thyroid. This disease takes your mind to dangerous places and morphs your body into an unrecognizable stranger, to yourself and others. That brings up a lot of anger, frustration and sadness. We encourage everyone to write honestly. We want the good, the bad and the ugly.
A: How has Dear Thyroid evolved to take that mission to the next level? What keeps you going?
KS: As Dear Thyroid™ has grown, so have our goals. From a literary perspective, we receive poems, songs, rants, raves, love letters, hate letters, letters to doctors, and to and from families, among other literary works. Each piece is a gift, and treated with the utmost respect. Letters from families are as important as letters from patients. This disease impacts them as hard as it hits patients. In addition, we have ongoing columns about Graves’ disease, thyroid cancer, chronic illness, and a few more coming soon. We also giveaway Thyroid Awareness Bands, provide offline local support, family support and Wearing My Disease on My sleeve. Recently we launched a “Thymentor” program. We sell humorous T-shirts. (To be clear, we are in the process of becoming a non-profit and we do not accept any revenue.) We also partner with other organizations and groups to support their awareness endeavors.
I am empowered and inspired every day by our community and their courage. They motivate me to do better, fight harder and challenge myself to think as far outside the box as possible, to make life better for all of us.
As for the Dear Thyroid Team, I am VERY lucky to be working alongside such extraordinary, dedicated and talented individuals. Our team members donate their invaluable time, to write columns, support community members, and forge partnerships with other organizations. They donate their time—THAT’S AMAZING. They give so much of themselves to our community. I am in awe of them and have tremendous respect and gratitude for them. Each has such a unique point of view. With a pure heart and passion for their work, they bring it.
Stay tuned for Part two of the interview with Katie where we discuss online activism, the highs and lows of online community, and the thyroid itself!
Website: Endometriosis: The Silent Life Sentence
Blogging since: March 2007
Occupation: Freelance Writer, Freelance Correspondent for a local paper, an Aspiring Novelist, and a Part-Time Head Teacher at a Day Care. Above all, I’m also a mommy to two wonderful little kiddies
What made me start blogging?
I began blogging mainly as a cathartic exercise. I had no one in my community to talk to who had endometriosis and who could identify with what I was going through—and I needed an outlet to “unload.” My mother had had endometriosis, but her hysterectomy at 28 left her disconnected and unable to help me. My husband had been through so much with me health-wise and I didn’t want to drag him through yet another emotional medical journey.
So as a writer and someone who enjoys journaling to work through her troubles, I opened a blogger.com blog. I began cataloging my experience of being diagnosed with endometriosis as well as a very frightening mammogram. Eventually, I moved my blog over to wordpress.com and began getting a plethora of responses from women just like me. These women were my age, younger, even older! I couldn’t believe it–I wasn’t alone! They were thanking me for being so honest and raw with my language and for really capturing what it feels like to have endometriosis. And I realized my blogging wasn’t just for me anymore, it was for all of us “endo” girls. My blogging became a mission to help spread endometriosis awareness and education, as well as still being an open book into my life as an endometriosis patient. I do this with the hope that other women who have the disease, or suspect they may have it, will not have to feel alone as I once felt.
What motivates you in your writing?
My pain motivates me. It reminds me that life is short and that no amount of pain is going to stop me from living every last minute of it. I often write through the pain.
My readers also motivate me. Without them I would be writing into an empty void with no one to bounce my ideas off of. Their comments are often inspirational and I enjoy them so much!
Who do you admire in the Endometriosis community?
I really admire Jeanne from ChronicHealing.com (formerly Jeanne’s Endo Blog). She’s an inspiration for women with endometriosis and other chronic illnesses. During the month of March (Endometriosis Awareness Month), Jeanne created the hash tag #endo for Twitter and had it placed in the Twitter Hash Tag dictionary. It’s use in now widespread on the social networking platform. Also during this month, I instituted the phrase for use on endometriosis blogs and Twitter: “March Blogging Madness for Endometriosis Awareness.” And Jeanne was instrumental in helping to circulate this catchphrase. Jeanne is always willing to come to the aid of a friend, endometriosis sufferer or not.
What are the most common questions people ask you – and what do you tell them?
I get asked about my experience a lot and I often tell them my personal account—how I was diagnosed, etc. But I reiterate to each individual that the time it takes to be diagnosed is different for everyone. The only way for endometriosis to be diagnosed definitively is by laparoscopy. This diagnosis takes, on average, 9.9 years. During this time, doctors may “suspect” that you have it, which was my case for years. They can “suspect” and treat you to an extent all they want. But to be diagnosed one way or the other is important.
I’m also asked how I deal with co-workers, family, friends, and people who just don’t understand the pain I’m going through with my endometriosis. This is a difficult thing to deal with—people who don’t “get it.” It would be easier if we had broken bones, or even cancer. People could see our casts or our hair falling out from the chemo—and they would sympathize with our pain. But when the pain is so internal, so deeply hidden in our wombs with no external reference point for others to identify with, it makes it almost impossible for them to understand.
My answer is—you can’t make them understand. They will never understand because they can never walk in our shoes. But take two people with endometriosis—they can look at each other and they just know. They know each other’s pain and they don’t even have to describe it. They know the cramps, the bleeding, the cysts, the adhesions, and the endless pain. They just know. And, while you can’t make other people “understand,” you can educate them.
The more people we educate about endometriosis—in the work place or in the world—the more we will be taken seriously by our co-workers and loved ones. Endometriosis isn’t simply a “bad period,” as non-sufferers believe. And we need to get that word out. We need to band together, with those who understand our pain, to get that accomplished. We are not a minority; after all, according to the Ohio State University Medical Center, endometriosis is more common than both AIDS and cancer. That makes endometriosis patients a majority, a strong majority of 89 million women worldwide. When we combine, we can get our voices heard.
What would you most want to say about your condition to someone who doesn’t have it?
We are not drug-seekers—we are actually in pain. We are not lazy—we are prone to sitting on the couch in a puddle of tears because our insides are bleeding. We don’t need your pity—we need your honest, compassionate support. We don’t need or expect that you will understand what we are going through. We need you to understand that you never will. We just need you to acknowledge that the pain isn’t a specter, an imagined thing come to haunt us, or something we created in our minds. We need you to acknowledge that we are not “making the pain up,” not receding into tiny balls of tortured women every month in a desperate cry for attention. We just need you to acknowledge that our pain is real—even if you can’t feel it or see it.
What is your favorite health-related resource?
That’s a tough one! I have so many health-related sources I use. I would point readers to WebMD.com, though. I read the articles and use their little quizzes and tools often. It’s a great site and health source, full of wonderful references. I even have their gadget on my iGoogle homepage so I can receive a current feed of articles from WebMD.com.
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Who inspired you? Contact us and tell us who we should feature in our next Spotlight Interview.
Spotlight: Andréa Albright
Blog: Andrea’s Healthy Weight Loss Blog
Newsletter: Amazing Body Now
Blogging since: February 2007
Work: I’m an Author, Yoga Instructor, Meditation Guide, Healthy Weight Loss Coach and former “chubby girl”
Favorite vacation spot: Thailand – Love the fresh fruits and vegetables, the crystal-clear beaches, and the people that smile like the sunshine.
Favorite food: Raspberries – they’re full of vitamins, minerals and antioxidants and they burst and bubble in your mouth like champagne.
For full interview
Learn more about Andrea Albright
What led you down this career/career-path?
When I used to be fat, I tried all the famous diets to lose weight but nothing worked. Then I accidentally discovered a simple system that made the fat melt off my body. I wrote a book and started to put the idea out there because I wanted to help other people who were struggling to lose weight. Now this simple system has worked for thousands of other people too.
What was your motivation for getting involved in the health community?
There is a lot of bad, false information out there about weight loss. Once I discovered how to lose weight naturally and permanently, I wanted to share it with people confused about healthy weight loss and show them how to do it step by step.
What are some of your favorite treatment/weight loss methods?
First is “Count Chemicals Not Calories” – I call this my 3C Rule and it is one of the easiest and best things you can do to lose weight naturally. As it turns out, counting calories doesn’t work, but counting chemicals does. They put chemicals in food to keep it from spoiling and to make it taste better – but these chemicals destroy your health and your waistline and cause out-of-control cravings that make you eat way more food. This makes it impossible to lose weight. So Count Chemicals Not Calories. Read the ingredient label on everything you eat. If there are chemicals in it, don’t eat it.
Second, “Throw Away Your Scale” – The scale is the worst way to judge your health or weight loss progress (everyone uses the words “weight loss” but what you want is fat loss). As you get healthy by exercising and eating healthy foods without chemicals – you are going to be building muscle and bone density (your bones will get thicker and stronger – that’s a good thing!). You may gain weight because muscle and bone weigh more than fat cells. But your body will be getting smaller and tighter all over (that’s what you want!). If you throw your scale away, you will not be fooled by numbers. You will focus on more consistent and more reliable methods to judge your progress.
Lastly, “Tune In To Your Spirit To Stay Inspired” – When people tell me they need more motivation to lose weight, I say, “What you really need is inspiration”. The word inspiration literally means, “to bring in the spirit” in Latin. By connecting to your spirit (or your greatest meaning and purpose for living), you will have an endless supply of motivation to continue because it will be connected to the greatest power you have available to you.
What inspires you?
My personal mission – to change the way women lose weight. So many women struggle and suffer because they hate their body and the way it looks. They are living in a prison inside their own body. I want to help them break free. Every woman who wants to get healthy and live a life without extra body fat can do it. I’ve seen it happen to so many different people all around the world. I know this system works and it’s so very simple. I just love teaching it and spreading the message.
What have been the benefits of using the web in this way?
You have the ability to connect with millions of people around the world and get immediate feedback on your writing, videos, blog posts, etc. You can truly listen to your audience because you are in a “real time” dialogue with what your audience wants, and you can give them exactly what they need to succeed every day.
I recently spoke with Leslea Harmon, founder of Allergy Ware and all around allergy guru about how it all started. In this clip, Leslea shares tips for new food allergy parents, talks about the benefits of using the web and how she balances it all.
This is the first installment of the WEGO Health podcast, so give it a listen and let us know what you think! Details about subscribing to our podcast through iTunes are coming soon.
This podcast is available under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States.
We’d like to announce the winners of our book giveaway! Amazing Health Activists: Patricia F. Anderson, Connie, Stacy, wholemom, and Jasmine! These exciting Health Activists, in addition to joining the WEGO Health community, have won a copy of How Doctors Think by Jerome Groopman. Congratulations! We look forward to learning from each of you. Your unique, important perspectives will add so much to our health community.
Patricia F. Anderson was the coauthor/editor of the Medical Library Association Encyclopedic Guide to Searching and Finding Health Information on the Web, her first major effort to reach healthcare consumers en masse. Now she is working with social media to explore health information and outreach beyond search engines. She works as the Emerging Technologies Librarian for the Health Sciences at the University of Michigan.
Connie is pleased to provide basic information (to anyone who will stand still long enough) about dystonia, as well as movement disorders in general. As an RN, she feels fortunate to have that opportunity in a variety of settings. She’s gained much information on dystonia from WEGO Health, Care4Dystonia, DMRA, and through her own research. In addition, having made the journey of losing her son, Connie wishes to mentor those who have gone down this road after her, as it certainly affects emotional health and even physical health. She welcomes any contact from those who have dystonia or those who are trying to survive the loss of a child.
Stacy wears a lot of hats, but they all involve the same subject: health. She is interested in chronic pain, TMJ disorder, headaches & migraines, fibromyalgia & ME/CFS, RSD, ankylosing spondylitis, how people deal with chronic illness, and other topics. Some of her many hats include: writer, patient advocate, community manager, and non-profit consultant.
wholemom left her career in marketing to stay at home when her twin girls were born five years ago. This past year, she began studying holistic nutrition through Trinity College of Natural Health and will have a Certificate in Nutritional Counseling upon completion of her classes. In November her sister-in-law and she decided to start “Living a Whole Life,” a blog dedicated to exploring holistic nutrition, naturopathy and greener living. Her goal is to help others realize that good nutrition and exercise really does make you feel better, fight off illness, and live a longer happy life!
Jasmine is a strong, 35 year old woman who loves to blog about her life with Migraines, Fibromyalgia, and Multiple Chemical Sensitivity. She does this to help others who are suffering, as well as educate those who are not. Her life is better now that she’s learned to turn the negative experience of pain into a positive, purpose-filled one.