In Thyroid Patients Canada, our growing organization features two Facebook groups.
- Our patients-only thyroid support group, Thyroid Patients Canada Support
- Our open-membership Thyroidpatients.ca Public Group.
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 team of group moderators. One team of peer patient leaders currently moderates both groups.
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.
Since we give such personal support and moderate both the public and private forums, 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.
Qualifications of a moderator
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. There’s also the skill of asking for more information.
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 reading scientific literature.
The word “peer” is the key. None of our moderators are doctors, and we won’t ever forget that. This awareness keeps us from getting too hierarchical in the way we write.
Hierarchy can 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 each other tips and support, and moderators act as good examples of peer-educators and peer-advisors.
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 does a good moderator give tips and convey scientific facts without sounding like they are superior? By making science the authority, and making themselves merely the messenger delivering scientific facts and suggesting — tentatively — how they might be applied to the current case.
If a moderator makes a general claim about how the pituitary works, how the thyroid gland works, or thyroid hormones work, or how hormones, nutrients, or supplements work in synergy with the thyroid hormone system, they are encouraged to provide a link as a citation. If they don’t provide a link/citation, anyone can ask for one.
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 various 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, diligent acts of asking, seeking, and sharing are far more important than the static state of already 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?
It is challenging to be a good self-advocate in doctors’ offices because we are often 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.
As patients, we sometimes need to provide our physicians with science-based information that aids in the interpretation of our lab tests, or even encourage them to order certain lab tests.
Just as we have to manage our psychological needs and vulnerabilities as patients, we have to manage our physician’s need for our respect for the duty of care they carry out, as they are charged with defending our health.
Keep in mind that while our health is at stake, their career is at stake if they are perceived as going against the treatment guidelines and local healthcare system policy.
The good news is that good thyroid science can defend them from being accused of being “non-evidence-based” when they make exceptions to the guidelines in the way they order tests and prescribe thyroid medications.
However, some doctors don’t respond well to patient input and suggestions on their own thyroid therapy. Outside the doctor’s office, I am a university-level educator, but I’ve learned that when I sit in a doctor’s office, I’m just another patient. I can’t educate my doctors about thyroid in the setting of a doctor’s appointment — unless they are willing to permit me that role. Many physicians see the physician-patient relationship very differently as a hierarchy in which they educate us, not vice versa. It takes time to establish a relationship of mutual trust.
Skill in navigating our patient-doctor relationships and becoming a partner in our own care is not easy to acquire. Discussion with peers may help.
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 our moderators currently hails from the United Kingdom, and one from the US. 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 when female vs. male genes, sex organs, and sex hormones are involved.