In Thyroid Patients Canada, our growing organization now features two Facebook groups.
- In our new patients-only thyroid support group, Thyroid Patients Canada Support, we have a well-qualified team of SIX peer moderators.
- In our open-membership Thyroidpatients.ca Public Group, we have SEVEN moderators, three of whom also moderate in the private group. We’re quite proud of their skill and commitment to our organization, as well.
Learn more about our two groups at our new set of Group pages before asking to join.
In today’s post, I’d like to talk about the qualifications and diversity of our private support group moderators.
I hope our team members don’t start getting overly self-conscious now that I’ve posted this. I didn’t announce beforehand that I’d be doing it. It’s rather spontaneous, coming from a gush of gratitude from my heart as our core leader.
I want to show how to our readers much I appreciate every one of our leadership team and their engagement with me, with each other, and with people in our groups.
Today, our new private group moderators deserve the honor of a spotlight on their role and qualifications, since they’ve written up their biographies for you.
As you journey through the article, I’ll feature some of our collection of support group memes. Anyone is free to download and reshare our thyroid memes. May they go viral!
Qualifications of skill and character
The top qualification for a moderator, in my opinion, is communication skill.
You can have all sorts of skills and character traits, but without the ability to express them, nobody will know and certain talents won’t shine through.
A peer leader in a text-based discussion forum needs clear (not necessarily perfect) writing skills and a flexible style that communicates emotions as well as facts.
In my professional life, I teach public and professional writing and rhetoric at university, and from this perspective I am confident our team has the skill to make their positive attitude and engagement with others show through in their comments.
A good moderator is the very opposite of an arrogant, bossy person who thinks they know it all and are there to show it off. How do you give tips without sounding like you are superior?
Moderators aim to be peer mentors who lead by example, demonstrating a mixture of humility alongside well-earned self-confidence in what they really know from experience and/or research.
The word “peer” is the key. None of us are doctors, and we won’t ever forget that. This awareness keeps us from getting too hierarchical in the way we write, as if we are the staff and others are the customers.
Hierarchy can also foster laziness among non-moderators and an attitude of peers expecting too much in the way of tips and help. We should all be able to offer tips and support. The old adage about “teach a person to fish” applies here. We’re here not to serve fish at a restaurant, but to help us all learn how to fish.
Since our organization values science so much, the kind of moderators that join us have an intrinsic curiosity to learn more about thyroid science.
Our moderator team members are at different stages of learning about the science in our field, and we know the literature is immense and growing at a fast pace.
We know that our doctors and even the scientists themselves can’t keep up very well, either. I believe that enhancing thyroid patients’ knowledge in a support group can indirectly disseminate thyroid knowledge through our conversation with friends, family, the public, and our health care providers.
Therefore, a diligent acts of asking, seeking, and sharing are far more important than the static fact of knowing something.
Our team of moderators is ever sharpening their online searching skills and their abilities to ask good questions and discern scientific sources from less science-based sources.
This is something we also try to encourage our fellow patients to do with us, despite our brain fog.
We strongly prefer going to the root source of all health knowledge, which is found in medical journal articles, most of which are indexed on PubMed. However, we don’t treat these sources as if they are infallible, either.
Thyroid science is immensely exciting when it connects with individuals’ therapy challenges. It’s like going on an adventure across the world in search of understanding and cures you can bring back to real people. I like to say that “if you follow thyroid hormones, they’ll take you everywhere in the human body.” What a world! We can view the unity yet diversity, complexity yet connectedness of our bodies, from the thyroid point of view.
I often go on this journey alone at my desktop computer, but journeying together through dialogue is a much richer, interactive experience. We get to see through each other’s eyes, and we can see when our retrieval of knowledge helps someone.
Troubleshooters in Self-Advocacy
As a health advocacy organization, the kind of patient leaders we attract are people who understand the challenges of patient self-advocacy in the context of the slow, hard task of making system-wide changes in thyroid therapy.
Everyone in our team wants to see thyroid patients succeed in finding high quality care and optimal treatment today. Our health can’t wait until policies improve.
How can we work around thyroid medical prejudices and blindness while respecting our doctors’ roles and limitations? How can we navigate the minefield of patient-doctor relationships?
An example of my own self-advocacy blunder
Some of us know that doctors often don’t respond well to us coming armed to an appointment with a medical journal article printed out.
I’ve done that myself many times.
I tend to believe the best of people at first, when I have no evidence to the contrary. That’s just part of my character. I offered that naive faith to my doctors.
I value science, and I naively believed that if the doctor claimed to be “evidence based,” they would truly want to learn along with me.
I’d like to reflect on this particular blunder of mine.
I don’t believe many patients bring scientific articles to an emergency visit, but I’m an academic. I had a bag of them printed and ready to take with me whenever I had my next attack of body-jolting, frightening cardiovascular symptoms. I knew they wouldn’t understand, yet again, why this was happening to me. My pain and distress drove me to research deeply, and I brought the fruits of my research with me.
Why doesn’t that strategy work so well most of the time?
- First of all, most doctors tend to assume you’ve done only non-scientific reading, even if you’re a professor who knows how to research. All patients are naive, right? Correcting a mistaken prejudice early on adds friction to the conversation.
- Next, once they find out it’s a scientific article, the doctor likely hasn’t read the article since it’s one in thousands out there. It’s intimidating to see that the patient knows something they don’t, something very specific to their condition right now.
- Some doctors seem to have learned in med school a bizarre tactic to try to regain the upper hand. They inform you that you’ve imagined your illness because you’ve researched it, since you can’t possibly think critically when it comes to your own health. This way of sharing knowledge can come at a risk to the quality of our health care, sadly.
- Finally, the forum is not that of a medical conference, classroom, or coffee shop. Of course we and the doctor can’t possibly digest or analyze the article’s contents together during a limited, focused communication event like a doctor’s appointment, so it’s hard to talk about the article’s contents.
You see, I have the courage to talk publicly about my own past communication blunders, and that’s the kind of moderators I hope we are as a team.
Blunders happen in our doctors’ offices because we are sick, brain-fogged, emotionally fragile, and desperate, and we often feel so powerless.
So often, we’re at the edge of crying when we arrive at the appointment, our bodies and minds shaking from pain, fear and hope. The last thing we want is to look like all we need is an antidepressant when we know that’s not the root problem.
However, we have to manage our psychological needs as patients. I’ve learned that my bag of journal articles was my psychological security blanket. It was familiar to me, like a student bringing her textbooks and notes to her appointment with a thesis supervisor. Having that bag of papers with me made me feel like I was ready if I ever did meet an open minded, inquiring doctor in a new health care environment.
Gradually I learned that I can’t be an eager student to my doctors because it could do more harm than good by showing them I saw our relationship very differently than they did.
Now I carry enough in my head and my smartphone, and I don’t need the bag of papers.
Skill in modeling troubleshooting patient-doctor negotiations is not easy to acquire because we have so many personality types and challenges. I have confidence that our moderation team is eager to help us all navigate this minefield.
Diverse thyroid disease and therapy experiences
When building a strong team of moderators, the collective diversity of the team’s personal experience is important.
Diversity of thyroid diseases and conditions is paramount. Some of us have complex and overlapping thyroid conditions like thyroid gland atrophy or thyroid nodules, central and primary thyroid disease, various types of thyroid autoimmunity, and thyroid genetic polymorphisms.
Our diverse health conditions make it necessary to find therapeutic adaptations that fit the patient.
An important mantra for the forum is that “optimal is individual.”
Diverse thyroid pharmaceutical experience
Together, we represent a wide range of personal experience with all the thyroid therapy pharmaceuticals available.
There aren’t that many choices since there are only T3 and T4 hormone, but the brands and combinations are diverse. The field is full of controversy.
This is a sensitive topic. One of the things Thyroid Patients Canada fights against is “thyroid pharma prejudice,” the idea that there is one thyroid pharmaceutical that is better than all others for all patients, or the converse, that one pharmaceutical is worse for all patients.
- Many of us have tried more than one thyroid pharmaceutical and combinations as we searched for one that worked, so we know well that each person responds differently to each medication at different ratios.
- We have each participated in other thyroid support forums, where our experience hearing other patients’ stories has proven to us that each patient responds differently to a pharmaceutical.
- We’ve seen all sorts of adverse responses that can’t be explained merely by under- or overtreatment, including allergies to fillers. Sometimes merely adjusting the dose does not achieve adequate treatment; one must have the option to change the pharmaceuticals involved.
In terms of demographics, we are diverse. we are at different ages, and we have varied educational and professional backgrounds. Some are single, some are married, some have children and grandchildren, and some have dogs or cats. And yes, caring for animals can be very helpful to a thyroid patient’s mental and physical health!
One of us currently hails from the United Kingdom. This is important because our support group is international in its patient membership. Posts and comments arrive during all time zones, and topics arise that are unique to other countries. We chose to make it international so that we could learn together across borders. We have each had unique thyroid struggles and victories as we received thyroid care in our local health care systems.
One thing not so diverse about us is that we’re all female, both in gender identity and sex. Perhaps this will change in future; we are open to male peer leaders developing among us. However, this sex and gender profile fits our community, since up to 9 out of 10 thyroid patients are female. A lot of the images and examples in our memes are female. Nevertheless, male thyroid patients are valued and are more than welcome. We need to learn together about what’s similar and what’s different about thyroid conditions and therapies across sex and genders.
Since we give such personal support, it’s helpful to provide introductory biographies.
Our team will likely change over time as some of us move on and new moderators and admins join us, but our current slate can be viewed at the Admins and Moderators page.
Even if you don’t join or can’t join because you’re not eligible as a thyroid patient, we welcome you to enjoy reading the short stories in our biographies.