To round out January’s focus on Thyroid Awareness Month, we’re thrilled to have had the opportunity to speak with About.com’s Thyroid Disease Guide Mary Shomon about her personal experiences with thyroid disease and her advocacy work both online and off. Diagnosed in 1995, Mary has been a passionate advocate for thyroid conditions and a Health Activist in every sense of the word. A wonderful and prolific advocate since the days of dial-up, Mary started as many Health Activists do – with diagnosis then self-education. Mary is drawn to correcting misinformation and helping others “fast-forward up the learning curve.” Dedicated to lessening the stigma related to thyroid conditions, she’s doing a lot to counteract incorrect notions about thyroid. In face, this past week Mary has begun to, quite literally, change the “face” of thyroid disease with her awareness campaign I Am The Face of Thyroid Disease with fellow thyroid activist, Katie Schwartz. Thanks, Mary, for taking the time to talk with us today – we’re so excited to learn more about your health activist story and raise awareness for thyroid in our community!
Amanda: Can you tell us a little bit about your background and why you became an advocate for your health condition? What made you get involved in the first place?
Mary: I was diagnosed with a thyroid condition back in 1995, and at that time, there were few books available about thyroid disease, and very little information out there. If you said thyroid, the mantra you’d hear was “easy to diagnose, easy to treat.” My doctor called in a prescription for me, and I thought, “great, in a few weeks, I’ll be back to normal.”
It didn’t quite work out that way. My doctor and I tried a variety of approaches, and we were both quite surprised as symptoms continued or even worsened, and new issues appeared.
It was, to be honest, frustrating and frightening.
I also knew nothing about the thyroid, and I quickly realized that I was going to have to learn more about it than the fact that it was “in the neck area!” So I started reading medical journals, and eventually went online — that was in the days when I had such a slow modem that I’d click on a link and then go get a cup of coffee because it took 10 minutes to download a single web page!
A: What made you decide to bring your crusade online?
Mary: Online, I connected with other thyroid patients, and it was both encouraging and disheartening. I recognized my own struggles in others’ stories, but I also saw that many of us were having a very difficult time — struggling to get diagnosed in the first place, or struggling to be treated respectfully by doctors, or struggling to get treated, or struggling to get the right treatment. So I created a website, and eventually brought it to what was then the Mining Company, and is now About.com. I was putting out articles, doctor interviews, and information that debunks the “thyroid disease is easy to diagnose, easy to treat” myth, and providing more realistic information, guidance and support for people with thyroid disease. Since that time, I’ve written ten books on thyroid disease, launched a patient newsletter called “Sticking Out Our Necks,” and been involved in the creation of a number of sites like the About.com thyroid site , ThyroidInfo.com, Menopause Thyroid Solution, The Thyroid Diet Revolution, and since January is Thyroid Awareness Month, the one of particular interest this time of year, Thyroid Awareness Month. More recently, I’ve branched out to social media — I’m @thyroidmary on Twitter — and Facebook — to get that information out in new ways.
A: How has the online health community helped to support and educate you? Have you used it to help support and educate others?
Mary: The online health community has helped to support and educate me, and I’ve definitely used it to help support and educate others. I would never have become a thyroid patient advocate if not for the existence of the Internet and online community.
I’ve moderated an active online thyroid support forum since 1997, and I get hundreds of emails from thyroid patients around the globe each week. Many of the story ideas, and thyroid news I’ve covered come from forum questions and emails I receive from other patients and practitioners. At the same time, sending out weekly and monthly thyroid newsletters for more than a decade, answering many thousands of emails, and publishing tens of thousands of articles, my goal has been to help other thyroid patients fast-forward up the learning curve. My mission is to do what I can to make sure that no one has to muddle through thyroid diagnosis and treatment, wondering if they are the only one experiencing difficult symptoms, feeling sick, alone, afraid, and exhausted. In many ways, I feel as if it’s been a 14 year long conversation. The arrival of social media like Twitter and Facebook has made that conversation even more interactive, supportive and personal.
A: What has been your proudest moment as a Health Activist? Or maybe your most challenging one?
Mary: I don’t know that there is one “proudest moment.” Honestly, I have them regularly. I have a proudest moment every time I receive an email from someone who says they had given up on the idea of every feeling well, and now they are in great health, and living a great life, thanks to information they read at one of my sites, or in one of my books. Or when women write to tell me that they finally got their thyroid tested and treated after reading something I wrote, and now have been able to have a healthy baby, after years of infertility and infertility treatments, while no one ever checked their thyroid. Those are the moments when I have pure gratitude for the fact that I’ve ended up as a patient advocate.
The most challenging moment as a health activist has been in trying to overcome the ongoing stigma of thyroid disease. We’ve come a long way, but we still have a long way to go. Shockingly, thyroid disease is overlooked and ignored by women’s medical groups, even though women are most affected. Endocrinology groups — and endocrinologist are supposed to be specialists in thyroid disease — seem to be much more interested in diabetes, which affects fewer people than thyroid problems. Celebrities — who are usually willing to share every intimate detail of their lives — somehow become reluctant to go public with their thyroid conditions. Even after Oprah was diagnosed with a thyroid condition, she then backpedaled and said that she had been “cured,” then said, no, she wasn’t cured, but she was refusing treatment. Meanwhile, we have advertisers, sitcoms and comedians all using the word “thyroid” as the new acceptable “code” for fat. As I said, there’s a lot more work to be done.
A: Is there anything that you wish the general public knew about your health condition?
Mary: What I wish the general public knew about thyroid disease is that we have an estimated 59 million Americans with thyroid problems, and the majority of them are NOT DIAGNOSED. So I want people to
- When you can’t get pregnant, or are suffering recurrent miscarriages
- When you’re gaining weight inappropriately, or can’t lose weight with diet and exercise
- When you’re prescribed an antidepressant
- When you have high cholesterol, and you’re prescribed a cholesterol-lowering medication (or, when the cholesterol-lowering medication isn’t working!)
- When you’re losing hair, suffering from muscle and joint aches and pains, or chronic constipation
- When you are feeling unusually tired or fuzzy-brained, and can’t concentrate
- When you’re struggling with depression or anxiety
- When you’re a woman over 40 with irregular periods, weight gain, fatigue, sleep problems (and you assume it’s perimenopause!)
And I also want the public to know that it’s not enough for your doctor to say “Your thyroid tests were normal.” You need to know what tests were done, what were the test results, and what levels does the doctor believe are “normal.” Because we have millions of people who are in a thyroid limbo — some doctors would classify them as having thyroid disease worth treating, but others would say they have no problem. And the lab reports say the test results are “normal.” So people who have thyroid conditions are being told they are normal, and left to suffer. It’s not fair, but we simply can not assume that all doctors know this, because they don’t. So WE as patients have to learn as much as we can, and advocate for ourselves, in order to get proper thyroid diagnosis and treatment.
Thank you so much for taking the time to speak with us, Mary, and for all that you do to raise awareness for thyroid conditions!
Learn more about Thyroid Awareness Month and be sure to check out more of her work and interact with her and her community now:
Check out the I Am The Face of Thyroid Disease awareness campaign: