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How To Kick Your Thyroid’s Ass: Speak When Spoken To?
I’m really no good at setting up a scene. A scene as in, you know, literarily, on a page or screen to detail a certain time and space. Sure I went to school for this stuff, and have written enough 15-to-20-page personal essays that have been marked and inked-up with reminders to “show, not tell” and “set the scene” to have better technique by now. But somehow I always seem to have a problem getting the certain specifics in place, like the wallpaper shade and pattern, or which fruit was in the bowl on the dining room table, or if the coffee cup was on a saucer or actually in my hand. And maybe those details don’t matter anyway.
Take for example, yesterday: a nothing-special kind of afternoon with a whole bunch of peace and quiet and an appointment for a haircut. A haircut. Simple right? Easy enough. No reason it shouldn’t be something other than relaxing. I can’t say I’ll be able to set up the whole scene, but I’ll tell you the important parts: me, a helpless me, at the mercy of a crazed, thyroid-hating, spiky-haired, purple-highlighted Debbie Downer. The entire 45-minute session, she wasn’t able to conjure up one nice thing to say about the state of my hair, or even a measly bit of obligatory chitchat: “Wow. Your hair is so dry” “It’s very thin at the ends” “What kind of shampoo do you use, again?” “Your hair is drying up on me… and I just wet it!” “You dye your hair at home, don’t you? I can guess from the color. Oh you don’t? Oh, well, the color is just beautiful! Very pretty…
I left the chair feeling violated. This woman has effectively rubbed my disease right in my face without even realizing. Sure, maybe she just wanted to sell me some conditioning cream. However, for me, it seems inexcusable and it left me with too many questions. Should I have spoken up and defended my disease?, Do I even want to defend this ugly disease?, Should I have said to her (in the politest, syrupy sweet manner of course), “Excuse me, surely you have no possible way to know this, only because we’ve never met and the few words we have exchanged have been rather impersonal and demoralizing, but you see, I have this thing called hypothyroidism (specifically the autoimmune kind where your own body attacks itself. Yeah for a writer, it’s a pretty sad scene; a bit too much metaphor for my taste). In fact, my whole life has been spent with really dry hair and dry skin. You’re not the first hairdresser who’s noticed it. , , Anyway, the point is, I have a DISEASE and so, I’d prefer if you not judge my hair management skills because, trust me, I eat a shit load of good fats (you know, oils, nuts and seeds, fish — things that are supposed to be really good for hair, and also let it air-dry 9 out of 10 times). The unfortunate and annoying thing about this disease is that I am constantly dehydrated. Like, thirsty all the time. But not just “thirsty” thirsty as in 2.5 gallons a day. Yeah, talk about potential kidney failure. Oh also, my thyroid gave my hair this bright orangey glow; you never know what’ll happen when your hormones are going all crazy. You can’t make that shit up. So maybe, instead of telling me what a shame it is that I really let myself go, and that I need to buy some of your endocrine-disrupting products that are probably chock-full of parabens and gluten that will only exasperate my condition, have a little empathy. Or, at least, think before you fucking speak?
If you’re a weekly follower of this here column, you probably read last week’s “How To Kick Your Thyroid’s Ass: When In Rome??, Part II“ (I’d love you if you did). If so, you get that this is a running theme: people unwittingly rubbing my disease in my face, if you will. Last week it was people asking why I was so uptight and wouldn’t have a beer, or why I wasn’t interested in the wheaty/buttery deliciousness of the hors d’oeuvres at my cousin’s wedding. This week, it’s hair. A few months ago it was, “Why don’t you ever remember anything I tell you?†So here’s my question: speak when spoken to?, Is part of the healing process explaining our disease to people (possibly, strangers) who are, clearly, very ignorant and insulting? ( “Healing process” as in, whatever that may be for each individual, since “healing can mean many different things on this path to being more well despite illness). Or is it better to not fight back? What do you do when people insult your disease?
In the end, I said nothing and still tipped her twenty percent. I don’t know if part of me was scared to divulge the details of my disease because it seemed inappropriate and out of place in the middle of a salon, or if part of me felt she wasn’t privileged enough to hear something so personal. Part of it was also that I felt for her because she had no clue and no way of guessing just from looking at me that yes, my body is sick and doing a whole bunch of shit I can’t control. I couldn’t return the insult with an insult. But maybe that’s just my cowardice showing. Just like this particular hairstylist, other people generally mean well but have no fucking clue that what’s coming out of their mouth in situations like these is so insulting. Is it okay to speak when spoken to?, Is it necessary? Is it a rite of passage in this club we call disease? And if we do speak, is it healing?
Until Next Week,
Love Always,
Liz
Have a question, comment, story, love letter, or rant/rave to send me?: Liz@DearThyroid.com
Tags: hashimoto's disease, How To Kick Your Thyroid's Ass, hypothyroidism, Liz Schau Writer, thyroid disease, thyroid patients speaking out, thyroid patients venting, thyroid patients writing about their disease
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50 Responses to “How To Kick Your Thyroid’s Ass: Speak When Spoken To?”
Leave a Reply to Kathy
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Liz! I can relate to this letter on every level. My hair goes through straw periods. My stylist used to grill me, and when I finally got my diagnosis, then realized the connection, I spoke up. She had a lot of grace about the whole thing and every time I see her she suggests some kind of natural mayo or avocado treatment… most importantly, she often doesn’t comment.
Regarding whether or not to speak… so far I’ve been taking that on a case by case basis. After forgetting where I was mid-sentence a thousand times in class, I heard a student make a comment that I was a ditz. I decided then and there to share with my students what was up. I kept it light, and very basic. Interestingly enough, I felt relieved and the kids (14-18) have been either quiet, or really sweet about it. “Mrs. B. you seem tired, is it your thyroid thing?” I’ve also noticed a huge interest from some of them about my lunches and snacks… “What’s sunflower butter taste like?” “Why won’t you eat a dorito?” 🙂
I suppose I’m of the opinion that in order to fully embrace ourselves, we have to embrace our disease. It is part of who we are, and I refuse to be ashamed of it. I don’t want to advertise it, or to rename myself Jess Hashimoto’s… but I don’t try to conceal it anymore. When situations arise where someone is making a judgement and it is directly related to this, I try to smoothly and succinctly explain what they’re missing. Hope this helps… and in all your pics your hair is gorgeous!
Jess
Liz, so sorry you had to deal with that! I think the hair stylist was a bit rude. My opinion is speak out. That is definitely how I use to be but now it is who I am. I am not scared to share or tell people about thyroid disease. It feels good to put a name to all the crazy symptoms. Like I am not just some hypochondriac! I do take care of myself the best I can! This is part of my life and I have to embrace it positively to survive! My name is Amy and I have myofascial pain disease and I have hashimotos hypothyroid. It will not defeat me! Liz, best wishes to you! Love your articles. I read them every week! Bless you Miss Liz!
Awww…geez, Liz. After looking at your photos on facebook last night and making my very truthful comment on your beauty—-I hate your experience yesterday!!!!!!
My daughter and I worked in salons for years. She did hair and I did manicures and pedicures. We worked in an Aveda salon that promoted “natural” lifestyles. And yes, cosmetologists do earn commissions on product sales, but there are ways to be tactful about dry/overprocessed/damaged hair that won’t offend your client. Your experience was not the way products should be sold!
I believe in giving out my medical history the same way Jess (above) does—-on a case by case basis. In your case, I would have very gently explained to that dimwit that some people have health conditions that effect the “health” of their hair and skin. Ya know….given her some enlightment?? Obviously she needed to be shaken out of her ignorance. And, isn’t this how we ALL learn??
I’m sorry that was your day…..thank you for sharing it with us.
BTW—I think you paint a beautiful picture or scene through words!!!
xxxxooooxxxx
Cyn
Liz, I also struggle with if/when to tell people about my thyroid issues. I hope the rest of your day and weekend were especially relaxing!
You gotta tell people. It does get easier. I’m starting surprise myself at how ballsy I’m getting these days.
I had a bad hair dresser experience. I was in the middle of a bad break out which happens when everything isn’t just so and I was on a two week long cruise (boyfriends parents thought it would be a good idea. Ha.) where I had little control over my food. She asked me if I ever washed my face. That was offensive. I’m embarrassed to say I’m still a little sore about that six months later.
Have you had your cortisol levels tested? I can’t remember the details but I know that your glucocorticoids have something to do with sodium potassium balance, which has to do with how much you pee which has to do with thirst levels. I started on 5 mg. of cortef 2 times a day and my nightly runs to the bathroom have gone from 10 or so times to about three. Water craving is less so. I am forgetting to drink water, which is bad but indicative of shift, which is positive.
My doc. had me do this:
https://www.neurorelief.com/index.php?option=com_content&task=view&id=402
He said that blue cross blue shield covers it but I ended up paying for the whole thing which was a little over 300. Worth it, if you can cough up the money.
There have been side effects but in my case, the cortef has been an overall improvement.
Also, you probably know that there are other ways to deal with adrenal fatigue other than cortef. In my case, I tried for a year with adaptogens and got very little improvement.
I had someone point out my fresh thyroidectomy scar and ask if I had a tracheotomy. I told them no, I was abducted and had my throat slit. It was more fun to see their expression when they realized they should have kept their mouth shut.
Since so many women are unaware of the broad range of symptoms for thyroid and celiac diseases, I use these run-ins as a chance to educate. The conversation might go something like this. “Your hair is really brittle, what kind of conditioner do you use?”
And I say, “A lot of women my (or our) age has thyroid issues, trust me, brittle hair is the least of my worries.”
Sometimes that elicits an apology, sometimes it becomes a teaching opportunity. I try not to be too technical, but touch on the highlights of our struggle: New tests aren’t being used or properly interpreted, docs don’t tell us about different med strategies, it’s possible to get better with better treatment, etc.
BTW, I don’t get comments any more about my dry hair because I leave a LOT of conditioner on…and nothing fancy…just Suave…but most people rinse too much out, my hairdresser told me (he specializes in very dry and curly hair). When he had me feel how much product was in my hair once he was done rinsing, I was really surprised. It felt VERY slimy. Really, you have to just barely rinse, just enough to get the goo all the way through the hair. I rinse a little extra on my scalp to keep it from getting oily looking…then put on some baby powder when it’s dry (as well as silicone-enhanced shine spray on the longer parts). I have (bleached) blond hair so the baby powder is fine for me…not sure how it works on people with darker hair…
Don’t let it get you down, Liz. I have read many articles that you have written and can see the picture that goes along with your posts and you seem to be a beautiful lady inside and out!
i’m pretty much an open book by now and just tell every person I meet that i have a thyroid thing-or i make comments that require people to ask what’s up–yep! pretty much lost my filters and sing about thyroid disease as if I were being tortured for top secret gov’t info…the old saying ” I could tell you but I’d have to kill you” crap bares no weight in my reportoire. My philosophy is if you see me you certainly need to know why i look this way…I’m doing you and me a favor… that is, unless I’m just too damn tired to talk about it and then it’s none of your damn business
This has got me thinking about passing judgment. If we all take a honest look at ourselves we most likely would admit that we do it. Either silently or vocally. It is so wrong. We just do not know what that person is going through. So, this could be a great lesson for all of us. And when someone treats us rudely let us rise above and not dish it back. We
can still tell them what is up…just with some love. Thanks for letting me share, Amy
My thoughts are so thyroidishly scattered today..I know I pass my own form of judgment when I look at someone who is not acting up to par in some way and wonder to myself if they don’t have a thyroid issue. I have mentioned more than once to a friend to please go and have their own thyroid checked.
I selectively talk about my issues, really intense conversations, with a few who I know will listen.. and those few have thyroid disease themselves.
As for the rest..some I know won’t care what I have to say and will try to fix me with their ‘cures’, no matter what. “Come swimming with us. You need to get out of yourself”, “You need to get a life” (oh, thanks for telling me! “I’ll work on that right away!) For those persons, I really don’t bother answering.
The others, mostly strangers who don’t and won’t care to have a clue, I’d rather make something up just to shut them up..”I have cancer” “I lost the baby”..anything to stop them in their tracks and make them not want to talk with me any more. Maybe one of the DearThyroid shirts should say “Yeah, it IS my thyroid, and don’t ask unless you really wanna listen”
don’t you feel like a broken record sometimes? yuk
Liz–I totally understand. My Hashi’s has made me frequently hyPER–it’s ugly. I have lost 12# as a result though, and now am wearing a size 6. The downside? People keep saying I look great–how did you do it? I struggle for an answer….I don’t want to make these well-meaning friends and family feel badly by saying, “Well, I have this chronic disease….”, but to say I’d been working at losing weight would be a lie. AND I’d gladly trade back for the size 10 body if I would FEEL as good as I supposedly LOOK.
As for rude comments? I’m all about stickin’ it in their face and making them feel badly! 🙂
I don’t think your antibody numbers necessarily reflect the seriousness of the thyroid disease. I know I had some TSI antibodies when I had a storm attack, but they weren’t that high.
Since celiac disease antibodies have been found attached to thyroid follicles (“Thyroid” Vol.18, #11 2008), I think they’re finding out that there are other causes of autoimmune thyroid disease than our most familiar antibodies.
http://www.celiac.com/articles/21713/1/Tissue-Transglutaminase-Antibodies-May-Contribute-to-Thyroid-Dysfunction-in-Celiac-Disease-Patients/Page1.html
I hate it when I tell someone that I have hyperthyroidism (Graves) nd they’re familiar with thyroid problems they invariably will say “Oh, I am hypo. I would much rather have hyper!” It’s not like one is better to have than the other. Both are horrible and have equally bad symptoms.
Liz- typical responses vary from curiosity, concern, nonchalance,boredom, to wanting to fix me…pretty much every response imaginable. A tried and true comment that works every time is :”Since I’ve been so sick…” I’d rather be an open book than have someone try and read between the lines
Firstly, I definitely understand. And it’s at the point where I don’t even go to the hairdressers regularly now. Just like … once every six months. Rank, I know. But so be it.
Secondly, this is an awesome piece of writing 🙂
The end.
ok, so i am reading this htkyta a week late and there are 43 comments and i cant concentrate long enough to read them all but i just wanted to say that i think we should all speak up about our diseases thyroid or otherwise and let it be know that there are numerous different conditions that come from thyroid disease. maybe by telling them we can educate them for their own health or someone elses. Maybe the hairdresser had no idea that thyroids could mess with your hair and then another lady with fucked up hair comes in and dosent know why or what is so wrong with her hair. Well the hair dresser could inform her she might have a thyroid disease. ya know. i tell everyone who wants to listen. The hairdresser, the nail lady, the waiter, the lady at the checkout stand who is staring at my fucked up eyes, the kids teachers when i cant remember what they just told me, yeah i tell them all sorry my thyroid is jacked and it causes this. (what ever my symptom happens to be at that moment) anyways thats my comment. Sorry if someone else already mentioned that.
Peace