Advocacy, in the wider sense of the word, has been on my mind lately... has piqued my interest if you will...
ad-vo-ca-cy n., pl. +cies. active support, especially of a cause.
ad-vo-cate vb. 1. to support or recommend publicly; plead for or speak in favour of. ~n. 2. a person who upholds or defends a cause; supporter. 3. a person who intercedes on behalf of another.
By lending emotional support to others: we are all advocates.
By opening up and being honest about our suffering and triumphs to friends and family (even if this falls on deaf ears): we are all advocates.
By writing, reading, or commenting on blogs: we are all advocates.
By joining, reading, or contributing to facebook pages/support groups: we are all advocates.
By doing our own research, educating ourselves, and increasing self-awareness: we are all advocates.
By hoping for a better treatment outcome, deserving a brighter future: we are all advocates.
You see where I'm going with this...
We are all advocates.
As much as I would never wish my suffering on my worst enemy (OK, a few *winks*) I will be forever grateful that I live in the "internet-age"... I shudder at the thought of what would have become of me if it were not for the world-wide-web, if I think too hard about it the internet still boggles my mind, it beggars belief!
Imagine having to go to the library to find out whether you really were losing your mind. Me? I was able to have my nervous breakdown in the comfort of my own home, and not until nearly six years later did I get a laptop and access to the internet... they really were the lost years (2000-2005 incl.). Then the painfully slow education process could begin, all the while meeting resistance at every turn in the real world... self-doubt was gorging itself by now, with my sanity the prized morsel.
It wasn't until this point that I discovered there were others... cue Pink Floyd, Comfortably Numb...
I may have mentioned before that I do not like to spread myself too thinly (just as well as I'm a fat fucker!) and value quality over quantity. The thing with the internet is that it is so easy to go off at a tangent (rather like this blog post!) and before you know it you are lost and your well intentioned starting point is but a memory... a road we all have to travel at least once...
Anyway, I have settled on what I consider to be reliable and trustworthy sources of information and first-person support: facebook pages/support groups, twitter, other bloggers.
My starting point though is always a good old-fashioned book, the excellent Living Well With Hypothyroidism by Mary J. Shomon. The balance of this book is just right for me.
Mary's other resources:
On facebook: Mary Shomon: Thyroid Patient Advocate, Author. In the last two years the number of "likes" has increased from 4,000 to over 15,000 and counting...
On twitter: @ThyroidMary.
On About.com (Part of The New York Times Company): About.com Thyroid Disease.
Website: thyroid-info.com.
Newsletter: Sticking Out Our Necks.
Mary has been the trailblazer in the world of thyroid patient advocacy since the mid-nineties, can you imagine the path she has travelled? Amazing. The internet has fanned the flames of patient advocacy, nothing more so than social-networking: facebook and twitter in particular. We are a virtual community connected by cyberspace and our numbers are heading in one direction and our voices will be heard.
With this in mind I have been made aware of an online petition by a fellow blogger, a real sweetheart, Sarah Downing of the blog: Butterflies & Phoenixes at SarahJDowning.com. Sarah is a wonderfully talented writer and it is an honour to call her my friend (Butterflies & Phoenixes facebook page).
I know, I know, the petition already!
The petition is titled Endocrinologists: Patients With Thyroid Dysfunction Demand Better Care and is the brainchild of Michelle Teresa who was joined in this endeavour by Denise Rodriguez and it is their intention to affect change for the greater good of all thyroid patients, now and in the future. I don't mind telling you that such selflessness makes me go weak at the knees! *winks & chuckles*
Please take a couple of minutes to read all about the petition and do not forget to sign it!... remember, together we can affect change.
There is also a facebook support group: Patients With Thyroid Dysfunction Demand Better Care.
The petition is hosted by www.change.org: "Our mission is to build an international network of people empowered to fight for what is right locally, nationally, and globally. We hope you will join us."
If you require further proof that Sarah, Michelle and Denise are not too good to be true please read the interview Sarah conducted with Michelle and Denise on Sarah's blog: Butterflies & Phoenixes.
I can smell revolution in the air... and we are all in it from the beginning... history will be our friend.
We are all advocates.
It feels appropriate today... never forget... for as long as we have hope we have a chance.
Thank you helping this petition! The internet really has changed the playing field for patients. Modern technology is allowing this petition to reach thyroid patients world wide. I believe we need to unite using this petition because we are all advocates. We can be the change.
ReplyDeleteHey Robert,
ReplyDeleteThanks for a wonderfully written blog post. I am touched you mentioned me as your friend. I too am honoured to count you among my friends:-). Good for you for promoting the petition - after all you've been through, I figured you'd be interested ... Keep up the good work!
Sarah
Great post!! And so true that we all are advocates....I also love the Pink Floyd reference..Perfect!
ReplyDeleteBeth :-)
Oh and Robert, I am sooo sorry about the way your mom and brother are treating you...I understand, since I have a few family members(one sister and niece) that, the healthier I get, the more insulting they become(hurtful to say the least)...They both also happen to be HypoT and on T4 only meds....I have offered help and advise, but to no avail...Hang in there friend!!! <3
ReplyDeleteTruly, we are all advocates. If not for people taking an interest and passing along information, I would have died years ago. In 2006, my untreated hypothyroidism was approaching the final stage, close to the coma which preceeds death. My blood pressure the day I found my new doctor was 102/65 and my heart rate was 62 beats per minute - my body was shutting down. Like a car with no accelerator, I was coasting to a stop.
ReplyDeleteYou are saving lives, just as someone saved mine. That you are doing so in such grand fashion while still likely grossly undertreated, is a feat of strength I could not do now, much less when I was in your shoes. Bravo! /CHEERS /APPLAUSE
I just found your blog, and I am excited to follow along. I have recently started reading more about my thyroid, ater trying to lose weight, and losing NOTHING after 5 months of eating clean, or eating more to weigh less, exercising 5x a week, eating no bad carbs, eliminating sugar, etc...all the while still feeling exhausted. After reading what Mary Shomon has to say, and others, I am flabbergasted at what little Doctor support I have had - and what things I have been doing that are NOT supporting the health of my thyroid. I will sign that petition, right now - and we can all hope, in all countries (I am in Canada)for better-informed Doctors that will listen to their patients. I thoroughly believe that we are our best advocates, but we need the Doctors to listen!!
ReplyDelete