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How To Kick Your Thyroid’s Ass: Finding Our Place Amidst The Pink

Post Published: 18 October 2009
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Category: Column, How To Kick Your Thyroid's Ass, Thyroid Nutrition and Health
This post currently has 61 responses. Leave a comment

This is not a popular opinion, but I’m a little resentful towards Breast Cancer Awareness Month.   I see it all over the news, on sidebar advertisements on the internet, and in the corners of little avatar icons on certain websites.   Every time I go to the grocery store I am reminded, and even in the most absurd and remote places with which you’d never actually equate disease and awareness: a shoe store, a candy aisle, a home goods shoppe.   Nothing says create awareness and cure this disease like a pink-handled can opener.   And maybe that’s all secondary to my point anyway, because if that can opener is bringing about dialogue and real change for the cause, then, great.   Of all the women (and men) who die each year of breast cancer and with a media saturated with pink this and pink that and ribbons in remembrance and symbolism, a pink October is good only if it encourages people to actually give a damn, get proactive, and realize how precious and fragile their health really is.

But here’s where the resentment part comes in here: the truth — the dirty-little-secret-of-a-story that isn’t being illuminated on the news this month is that autoimmune disease affects five times more people than cancer.   Fifty million Americans are living with at least one autoimmune disease, versus the 11 million with cancer.   Five times more lives are affected by autoimmune disease.   Five times and we have no one (united) autoimmune ribbon; we have no can openers, no tennis shoes, no tote bags and aprons, pens, sunglasses or cameras.   No water bottles, bracelets, step stools (yes, step stools), tweezers (yes, tweezers), blankets, scissors, blow dryers, sleeping bags, or socks.  ,  We have no nationally-recognized walks and runs and bake sales for our cause. Five times and we have nearly no media coverage and attention.   Five times and — fuck it — we don’t even have our own doctors.   There are no autoimmune doctors.   PCPs, specialists, internists, integrative doctors, endocrinologists, ENTs, rheumatologists, even infectious disease doctors (how demoralizing is that??) know nothing about my disease.

What’s more, 90% of the general public don’t even know the name of one single autoimmune disease; they can’t conjure up the name of even one condition.   Crohn’s, Lupus, Celiac, Type 1 diabetes, Psoriasis, Juvenile Arthritis:,   90% of people can’t name those?,   What does this tell us about autoimmune disease coverage in the media?,   Or better yet, what does this tell us about the numbers of people who are silently enduring an undiagnosed autoimmune disease all because they haven’t been made aware that their symptoms are real and there is a name for them?

The scary reality is that, just like cancer, people are dying at the hands of these diseases.   Autoimmunity is the eighth leading cause of death among women in the United States (the diseases affect women 75% more of the time than they do men).   This amounts to a staggering $120 billion burden on the nation’s health care system, versus cancer’s $70 billion dollars.   And still we have no ribbons.   And still we have no doctors.

So this week, how to kick your thyroid’s ass involves nothing more than these few short thoughts in honor of this month, all in an effort to get us thinking, questioning, and speaking. ,  This week, the path toward greater wellness is really rather clear: autoimmune disease needs a whole hell of alot of voice; from you.   Even if your thyroid disease isn’t autoimmune, remember that you still (sadly) have a chance of developing it in your lifetime, so, for that reason, this is important for all of us.   Autoimmunity is eclipsed by other (highly-marketable) diseases, even though autoimmune disease affects more people and does cause death.   Let’s face it: boobs — even if they are sick — are marketable.

If we want more chances at being well, we need to keep speaking up.   Maybe one day all this fight and voice (thyrants, Dear Thyroid letters, comments, blogs, books, conversations with friends and family, etc.) will secure us something — such as doctors who specialize only in our specific diseases and don’t follow a five-bullet list of generic symptoms; or, proper mainstream treatment options that are effective and don’t cause a whole host of other problems (cancer included); or, the big one for me — an elimination of endocrine disruptors and immune aggravators (and carcinogens) in our food and water supply and environment.   And if nothing else, maybe one day, autoimmune diseases will end up with their very own ribbon or step stool or can opener.

Until Next Week,

Love Always,

Liz

Also, please do yourself a favor and read this: “The Autoimmune Epidemic: Bodies Gone Haywire In A World Out Of Balance

Have a question, comment, story, love letter, or rant/rave to send me?: Liz@DearThyroid.com

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61 Responses to “How To Kick Your Thyroid’s Ass: Finding Our Place Amidst The Pink”

  1. Robyn says:

    You know I love you Liz! I was thinking about this last week–in fact was looking for a thyroid or auto-immune, or hell, a chronic disease “ribbon” or “color” because I was gonna go hog wild with it for Xmas this year. No dice. I had no idea of the numbers, though.
    Fuck cancer (no offense to those with it, I do *really* mean F-cancer!), but at least people with that get sympathy, empathy, understanding, etc. When I say I have thyroid disease, I get the “Oh, right….” look. Seriously I think I would need to have a limb missing or spontaneously bleed before some people would agree that I was actually sick.
    It’s all about awareness, isn’t it–I say we come up with our own color and start to grass-roots market the SHIT out of it. Is there a color that isn’t already taken, though?

    Funny also that my best friend gave me the best present this week. We both were very avid yoga enthusiasts until we both had orthopaedic injuries earlier this year, and are interested in the whole mind-body healing thing. She bought me this beautiful pendant with the sanskrit symbol for the 5th chakra–Vishuddha. The 5th chakra is the throat chakra and is all about the thyroid and how it runs the body. I haven’t taken it off since!

  2. Christina says:

    Do “we” really want an awareness like that?
    Pink ribbons? Pink handled can openers?
    Those are not signs of awareness,but symbols for companies that try to make profit from sick people. Yes,parts of that profit are donated,but does that really make a difference? Isn, ´t there a better way to raise awareness?
    After all breast cancer has become an everyday theme. That is truely horrible,but let, ´s e serious. The words breast cancer don, ´t mean that much if you aren, ´t affected by it.
    With the almost non existing awareness of the autoimmune diseases we get to explain what is wrong with us because people are still interested.
    They have never (or only rarely) heard of those diseases ,their symptoms and how they effect each of us individually.
    Yes,there are no “expert” doctors out there,but that only means that “we” have to find out what, ´s wrong with us on our own and read and talk about it to find help.That gives us a different way to deal with those diseases.

  3. I Googled images trying to find what an antibody looked like and apparently they’re often asymmetric and messy looking, and their color is defined by what they’re dyed with. But I did find this image: http://www.biology.arizona.edu/IMMUNOLOGY/tutorials/antibody/structure.html

    here is an explanation on the website:

    “Antibodies are immune system-related proteins called immunoglobulins. Each antibody consists of four polypeptides— two heavy chains and two light chains joined to form a “Y” shaped molecule.”

    If we make the ribbon red with a white border, then cut the top loop, keeping the bottom ribbons together with an extra stitch instead of letting it spread, it will look like a “Y,” and the red and white could represent red and white blood cells. I know we used to think the white cells were the sole indicators of an immune reaction.

    Here is a link to a video by Dr. Mark Hyman complaining about the lack of awareness and comparing it to Cancer and Heart Disease numbers.

    He speaks to the enormous problem of environmental toxins and how they affect our immune system. This is something, by the way, Ralph Nader has been talking about for decades.

    http://chyvonneb.blogspot.com/2009/09/blog-post.html

  4. dearthyroid says:

    Liz;

    Great article and very true. I agree 100%. Autoimmune awareness would lead to funds for research for a CURE, yes, a cure and everything else you said.

    We need to come out LOUD and PROUD. Our letters, rants, t-shirts and FACES have the power to invoke change — Early detection, better treatment, our own doctors and again… a CURE.

    Thyrellas/Thyfellas, hock hard, scream and rant. We will get there. We need to get there.

  5. Kathy says:

    You have said what I have thought (and have not had the guts to say out loud) for many years. And, I AM a cancer survivor. I had endometrial cancer 20 years ago this year. No one has ever invited me to a cancer survivors party. No one has talked to me, walked with me, fought with me, but…I have to admit, I have not gone looking for it either. I am grateful to be alive, and I don’t want anyone to go through what I did, but enough is enough.
    Every year, when it comes time to do the walk, buy the this or that.. I feel a little bitchy not participating, but somewhere deep inside my little memory fogged brain, it’s a secret way of saying NO..I don’t want to play this game, and that’s what it is turning out to be.
    I do the same thing when the Labor Day telethon for Jerry’s kids comes on..then I feel like a guilty bitch…again. Am I selfish for wanting to be heard, to have some support from just one doctor? Thank you, Mary Shomon for being our advocate. Thank you Liz and Katie for helping us to find our voices to be heard, even if it just here for now. I feel supported here. I give my spirit, when I can find it in support and I listen. And.. I feel listened to and supported in such a huge way. This is community. Being together as one, and caring for one another. And for that..I thank you ALL. I will be here as a thysistah for as long as it takes to get the word to the right people. One day at a time. One minute, one person at a time.

  6. katie says:

    I love this conversation and I feel quite lucky to be a part of it.

    I think these companies that offer “pink” products and donate a percentage to research are fantastic. Again, this is just my opinion. Regardless of their personal motivation, the disease has reached a level of consumer awareness that warrants action.

    Look at the “red” campaign, one dollar was donated for every product bought. The gap, itunes, and other large companies participated.

    Sad as this is to say, the only way, IMO, to get noticed is to speak up, and out and give our autoimmune diseases a name and a face. Re-package the perception of the disease, make it sexy, make it beautoful, make it a call to action. How else can we obtain money for research and a cure?

    Just my opinin,
    Love
    Katie

  7. Robyn says:

    @Curious Carol–you are brilliant! Before vet school, I actually studied immunology in graduate school for a bunch of years. I DNA sequenced thousands of antibody variable regions (the arms of the “Y”) of antibodies…ah, another life! The schematic is simplistic, of course, as in reality they are a 3-D protein with a little “hole” or binding site for other proteins. But within the science community, we all know that the Y is the symbol for antibody. Pure stroke of genius since those ribbons look just like that when upside-down. We should find someone with graphics talent and have them put a butterfly into the arms of a Y. Doesn’t get more clear than that!

  8. amy says:

    Interesting. I want to say that I look fairly normal and healthy on the outside but inside me there is a lot of crazy stuff going on. No one really knows, even my family, except for me what I am feeling/experiencing. So, this awareness topic is interesting. I can honestly say I did not know anything about autoimmune disease until I was diagnosed. And if I say I have an autoimmune disease a lot people do not what that is. Well, it is me. But I am not going down easily. I will do what it takes to be as healthy as I can be. So, I guess that this is all leading to me agreeing with awareness! Know your family medical history and whether you are predisposed! Know the signs and symptoms to look for because just maybe catching it earlier it wouldn’t be as bad. My brain is tired…I need to stop rambling. Thanks for another great article! Amy

  9. anita says:

    hell yeah!! and you bet your ass pll die. we now believe we lost my mother (no idea why she died at the time) to undiagnosed thyroid disease. only after i finally went to the doctor for all the same symptoms a year after she died (i was really nervous about having these symptoms!!!) did i find out it was all thyroid related. so i believe if we had known anything about this, we’d still have my mother. before diagnosis, i’d never heard of the thyroid. had NO idea. NO one talks about this and it’s huge.

  10. Julie says:

    Thank you for speaking so eloquently what I have been thinking.

  11. lori says:

    Does anyone know, what orginization/research org money should be donated to…I had been thinking about a jewlery design for thyroid disease with the color being blue/turquoise which is associated with the 5th chakra for the healing stone and of course a butterfly. I also like the idea of the rubber type bracelet and that would probably be a better place to start to be noticed….But, I am stumped where proceeds should go when it comes to “thyroid orgs”???

    However, the idea to promote autoimmune diseases may be a better idea and I absolutely love the “Y” design, truly, truly ingenious!!! I am all for getting the word out, this desparately needs to be done and I say go for it, absolutely!!!

    I just Googled and found “American Autoimmune Related Diseases Association” out of Michigan at…www.aarda.org They list about “150” autoimmune diseases. I had no idea there were that many!

  12. dansk says:

    I have both crohns with illiostomy m(20 years) and non-hodgkins lymphoma – cancer(4 years) . I still resent that I get support from a cancer agency, but there is still absolutely no agency for crohns or colitis, and no physical support anywhere. Where are all the agencies for auto-immune problems? Why is there no physical support out there when we have five times the number of people involved??

  13. lori says:

    It looks like each color already has a lot of causes attached to it, so one or two colors is probably a good idea. I LOVE the “Blue Morpho”, how appropriate. I like your first link to the morpho butterfly that was blue and black with white on the edges. I think any of the combination would be good but if I had to pick it probably would be the blue and black. I can’t believe there is actually a butterfly named Blue Morpho!!!

  14. Mel says:

    Well said!!! I actually just wrote a blog entry about this topic yesterday. lol This entire issue of autoimmune diseases being so hush-hush both in the media and medical community is what inspired me to start writing the blog in the first place. Thank you so much for speaking out about it and hopefully if enough of us do this we can bring about real change! 🙂

  15. Anna-Marie says:

    I had yet another day from he’ll when my sweetheart said something that I will never forget. “I think you would be better off if you had cancer” I was caught by surprise by that and he went on to explain “at least you would get some empathy and even likely recover. You would have all kinds od support. But with this disease it’s invisible and your always hiding it because no one will believe you’re suffering”.
    Maybe we need to come put of the closet with our suffering and quit suffering in silence. You know what they say about the squeaky wheel.

  16. Lori says:

    dansk asked: “Where are all the agencies for auto-immune problems? Why is there no physical support out there when we have five times the number of people involved??”

    Good question, I wonder if it has to do with death rates…cancer vs autoimmune…or maybe autoimmune needs to “come out of the closet” just like “cancer” did so many years ago. Remember people couldn’t even say the word “cancer”, then it was referred to as the “C” word..People with cancer didn’t get the support back then like they do now…

    (just thiking out loud here, trying to make some sense of this)…

    Maybe all that doesn’t matter now…What I do know is that we need to start “Speaking Out” and getting it in the press some how!!!

    I shared a link to my friends on FB to watch the new autoimmune awareness video this morning and asked them to help spread the word and share it with their friends for me…Sadly, so far only one person has responded. This says to me, ignorance, people do not understand…they think we are just complainers/hypochondriacs!

  17. Lori says:

    Liz, to your question…”first of all, you’re friends with Dear Thyroid on Facebook right? i’m pretty sure you are.”

    YES, and I am truly sorry if anything I said came across any other way! Maybe typing is not the best way for me to get my feelings across.

  18. Liz says:

    Lori, no no no! i just asked if you were friends with us so that i know you’re connected with our community. you didn’t write anything wrong! 🙂

  19. Bee says:

    I’m all for a march into D.C.—maybe if we all “march” topless wearing signs that say something like:” Now that you’ve seen my boobs, ask me about my thyroid gland ” (or celiac, psoriasis,crohn’s, etc) we’d get the media’s attention—I will preface this by saying I’d have to wear a butterfly mask to protect my family from the utter shock and embarrassment of acting ,yet again, on one of my hair-brained ideas

  20. Lolly says:

    Liz,

    I’m with you all the way making more awareness of Auto immune diseases instead of an army attacking our systems lets stand up and be that army that attack the medical mismanagement.

    I’ve had 4 AI diseases as far as I know but no- one can ever tell you why they happen, so much more research needs to go into it and money.

    What we got to do go round with a fucking Melanoma on our forehead to show we have something wrong. Just because it isn’t seen by the naked eye doesn’t mean it isn’t as dangerous as any other disease.

    Never mind ribbons lets just walk round topless with Y fronts on but for fook sake get that Merkin on first. I’m all for walking to D.C Might take me a year but I’ll get there.

    BTW I do like the Y ribbon idea.

  21. I went looking for a Blue Morpho butterfly image and you won’t believe what I found!

    First I asked a friend who handmakes embroidered designs…she couldn’t do it, but she referred me to this wonderful item…it’s an actual photo of a Blue Morpho butterfly on a choker. It looks great, is black and blue, and we could use turquoise/white ribbons… She said she can make them by the hundreds, will sell them for $5.00 a piece for 20 and more. You have to see these, they are gorgeous. She uses pieces of love letters for the backing…we could ask her to use pieces of Dear thyroid letters or just use terms that are common to autoimmune patients…like “underdiagnosed,” “you don’t look sick,” etc. This would be the perfect thing to distract from a thyroid scar, which I understand makes some people self-conscious…if we could get the ribbon just the right length so the butterfly rests on the collar bone.

    I really like the idea of supporting a woman who has her own business.

    We could sell them for $15 and donate the extra ten bucks to autoimmune research.

    We should probably do the ribbons seperately, they’d be a whole lot cheaper…I have no idea how to go about special-ordering a certain ribbon color, but I’m sure it could be done, or do them with some other Blue Morpho replica. Here is the link to the item: http://www.etsy.com/view_listing.php?listing_id=17660342

    I’m not sure how she does the words, now that I’m looking at it…I don’t know if she’d be open to customizing it, but I could ask!

  22. Lolly says:

    Hi Carol,

    Well I hope you got it insured in case of loss theft or replicas. That’s one expensive battle wound.

    I’ve never likes things tight around my neck and as far as i can remember I have had a goiter wasn’t till I had my thyroid out did I realise I actually had a neck.

    Couldn’t wear polo necks chokers.

    I do like the morph butterfly though. they would make nice pins or brooches too.

  23. I’m having a hell of a time finding ribbon that is turquoise and black. I’m finding a lot of turquoise and chocolate, though.

    I’ve written a company that makes awareness ribbons who may even be able to create a ribbon for us. They want $195 for a minimum of 1000 ribbons, though, and that’s with them already shaped in the typical awareness “loop.” I’m not sure whether they’d make custom colors for that price. I guess that comes to 19.5 cents per ribbon? I’ve asked if they could stitch them into a Y shape… let’s see what they say.

  24. Jan M says:

    Hi Liz!

    I’m enjoying this site a lot! I keep discovering more advocates out there and it gives me hope!
    I wanted to let you know about a beautiful blue morpho butterfly that Sue Sutherland Hack from Mary Shomon’s Save Natural Thyroid Facebook site posted!! Its so lovely. She created it in a heartbeat for “natural thyroid”–go to the FB site!! You’ll see it and if you click on it and scroll down to the comments, you’ll even find her e-mail address. People on that site are all struggling with understnding ALL kinds of issues–believe me! Thanks and more power to ya, ( to US!!) Jan : )

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