See Part 1 where I introduce my background as a thyroid patient
See Part 2 where I talk about my research and advocacy
What are your hopes for the future of Thyroid Patients Canada?
Updated January 2022
See “Thyroid Patients Canada becomes nonprofit corporation”
Above, all, I hope our campaign will become more effective at fighting for thyroid patients against trends and forces that can harm our therapy, such as:
- thyroid drug shortages and price increases
- thyroid hormone pharmaceutical prejudice
- thyroid lab tests that are inaccessible, cancelled, or unreliable
- inequity across provinces / regions in accessing good thyroid care
- medical attacks on good thyroid doctors
- common medical misunderstandings of lab results
- conventional medicine’s era of excessive obsession with TSH and its reference range, and naive faith in its omniscience and omnipotence, which arose in the late 1980s and is only now just starting to subside, thank goodness
- ageism and sexism, and other -isms interfering with thyroid therapy
- lack of awareness of thyroid disease and therapy — its symptoms, connection to other illnesses, drugs and substances that can interfere, etc.
I would like our campaign communications to deepen, develop and diversify.
We can’t just rely on text, Facebook posts, and Twitter. We need images, video, audio, face to face human interaction, and in-person gatherings. I hope we can be heard more widely in mainstream media.
All of this will take time, money and people’s expertise. Therefore, in the coming year, we hope that our group will become registered as a non-profit organization at the provincial and federal level.
We hope to raise funds so that we can pay for expenses and have some admin and legal support.
Please check out our new page “Donate and Support” — we are not yet a charity that can offer tax receipts, but we need donations to pay for basic organizational maintenance.
I strongly hope our campaign will always remain evidence-based and grounded in science, careful observation, and real patient experience.
On Facebook, may our content and tone in comments on posts represent a fair-minded, civil and intelligent community of mostly thyroid patients (and others). We have 2 Facebook groups, one public group, and one patient-only private group. See “Groups.”
In the public group, we have admins and moderators, but please help us moderate comments, since we can’t be there 24/7. All are welcome to learn and advocate with us, but our public discourse can easily get derailed by trolls, unreasonable biases, and unnecessary distractions.
If you see a comment go off track, play a role in nudging it back. If a comment is clearly anti-scientific, discriminatory, irrelevant, or engages in angry name-calling or spam, report it. However, when something is helpful information or well said, applaud it.
Mentor and encourage one another to learn more, care more, and take action to advocate for yourselves and fellow thyroid patients. Those who are healthier at the moment should join in advocacy for those who currently struggle. You never know when you might become the one struggling and needing a group like us to fight for a problem you and many other patients may face.
Let’s be aware that some kinds of discussion are best kept behind the scenes in a patients-only forum. If a newly joined thyroid patient wants feedback on individual symptoms, lab test results, or tips on where to find a good doctor or medications that are on shortage or distribution issues, please direct them there.
No, we do not give out lists of good thyroid doctors because they can be used against us or them, but other patients could help you find one near you. Good or bad doctor ratings don’t belong here but on sites like RateMD.
Engage in the form of activism called “clicktivism” — reading, reacting to, commenting on, and sharing social media posts, liking and reviewing our Facebook Page, retweeting our Tweets. While some think clicktivism is fruitless, I don’t think it is. It increases knowledge, enhances dialogue, builds community and is a staging ground for action. If we don’t learn, ponder and discuss before acting, we act foolishly. We make our voices heard each time we write a comment.
Finally, I hope for a continuing strong leadership group in our campaign. We currently co-lead and support each other well. We discuss strategies and plans as a whole, and we have smaller action groups working on projects. In any voluntary organization, sometimes people have to step out for a while. We each continue to struggle with our thyroid therapy and other health issues. Life can easily get in the way of advocacy. If I get hit by a bus, literally or figuratively, I want this good ship to sail on without me.
If you have further thoughts on our advocacy efforts, please discuss them in comments.
If you have major concerns with our direction or tactics, please message us privately so we can work with you 1-1 to understand and possibly resolve them.
If you have time and talents to offer, contact us.
Onward! Let’s all keep defending each other’s T3 hormone levels and improving thyroid therapy together.
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