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HashiKissMyAssOtos Disease
Dear Thyroid,
I am 19, an age that’s supposed to be one of the most memorable of my life. I should be starting university, going out with my friends, having my first relationships, starting an independent life on my own, and generally enjoying life… except I can’t. Because of you, ever since I was 15, I’ve had to watch my youth pass me by. Because of you, I almost never have any energy to go out, not even to the cinema. Because of you, I have bouts of depression, so frequent that even my wonderful, supportive and caring friends are, despite themselves, getting sick, of all my cancellations, rants and crying attacks. I know they’re fed up, though they try hard not to show it. They struggle to understand me, they, want to include me and they feel bad for leaving me behind. You’re messing with their lives too.
My family, on the other hand, gave up on me a long time ago. Sometimes they ignore me, sometimes they yell, but mostly, they laugh at my “hypochondriac ways”. But they never listen, and they certainly never try to, understand. But because of you I’m dependent on them, because my energy levels are so fucking low some days I can barely cook some pasta for myself without feeling like I’m about to collapse. So much for independence.
This is why I missed my graduation ceremony, my school’s graduation trip to Portugal, and my favourite cousin’s wedding. This is also why I’m not starting university, and I don’t know if I ever will, despite all my ambitions and dreams. This is why, instead of planning a promising future and believing I could achieve something with my life, I’m now wondering, if I’ll, ever manage to hold any sort of job and be able to support myself.
You, and your stupid Hashimoto’s disease, are also the reason why I’m always afraid of shitting myself in public. I can’t even begin to count the times I’ve had to leave a party to go home to wash and change or how many times I’ve had to make chit-chat with people, all the while worrying whether they can smell that something is wrong. You have no idea how humiliating it is just to type this, let alone having to live through it every day. How mortifying it is having this as your reality. How painful it is when shame and fear become an everyday thing for you.
Because of you, I have to listen to my friends talk about their relationships and hate myself for envying them. I’ve had to come to terms with the fact that I might never have a relationship of my own. Not even a fling. And no, it’s not even because I’m too tired for one, or too busy thinking about grown-up diapers. It’s because I haven’t had a hint of sex drive in 4 years. I’ve never even been able to enjoy a kiss, let alone anything more serious. Because of you, that is exactly what I had to explain while I was rejecting the person I’d been, desperately in love with for ages, when he miraculously told me he was in love with me too. Because of you, any sort of romance, is basically off-limits to me, and I just have to suffer, standing at the sidelines.
You’ve made me hate my life. What’s left of it, anyway. At the tender age of 19, you’ve made me angry, bitter, disillusioned and desperate. You’ve made me contemplate suicide while my friend were contemplating university choices. I still take my Armour, and my iron, and my vitamins every day. I still try to keep some hope alive. But even if one day something changes for the better, I know that I’ll never be the person I was. I know that I’ll never get my youth back.
P.S. I wish I could have made my letter to you somewhat more light, at least a bit more humourous. I do joke about my unusual ”lifestyle” with my friends sometimes, when I have the energy. But I have to admit, when I’m alone, I don’t find it all that funny. I think that I might have had a sense of humour a long time ago and that you robbed me of it, just like you robbed me of just about everything else in life. But then again, you know, I can’t really be sure, what with all the brain fog and everything.
Yours unfortunately,
Luci
(Bio) I’m a fresh-out-of-high-school would-be hedonist, trying to find some purpose and stability in my chaotic life. I want to be a doctor (yeah, I know), and hope that someday I’ll actually get a chance to try. Or at least a chance to move out of my parents’ place. I’ve been fighting with hypo and Hashimoto’s since I was 15, and though I’m not as courageous in doing so as some of you, I still haven’t given up.
Tags: affects of thyroid disorders, teenagers with thyroid disease, teens and hashimoto's thyroiditis, thyroid literary support, Thyroid patient letters, thyroid symptoms
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21 Responses to “HashiKissMyAssOtos Disease”
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Not as courageous! What! This letter is very courageous, and your fight long and unfair. But, it is your (and our) fight, so all you can do is forge onward. I hope that with good regulation, you will get some of your life back, and learn how to make the best with what’s left. Get your vitamin D checked if you haven’t already.
This is me talking in an “up” phase, but believe me that I’ve been to the dark place, too.
You’ve got family here that will always understand and support you!
So true Robyn!! — she IS courageous and she is strong! We all have to forge onward… whether we like it or not… it’s our only means of survival against the horrors.
Luci,
My heart breaks as I write this letter. But also I completely understand what you are going through. I have felt the same way lots of times. You are not alone and you can overcome. Gather up all the moxy you got girl and get going. You have a lot of life to live and a lot of stuff to do! I have refused to let my Hasimoto’s disease define me as a shut in. I know it’s tiring – I am with you on that. But I may be tired – but I am going down kicking and screaming.
You mention Pasta in your letter as well as wearing an adult diaper.I know a lot of Hasimoto’s suffers also tend to suffer Celiac disease. Have you thought of getting tested? You may be alergic to Gluten. Just a thought.
I urge you to get out an enjoy life! It has so much more to offer than Hasimoto’s disease.
Good thinking Jody. You’re one smart lady. Thank you for suggesting that. Luci, I (Liz) would totally encourage you to try a gluten-free diet and see what happens. It has helped so many of us so much. I have Hashimoto’s too and it’s completely changed so many symptoms for me.
Hi Luci
Wow so many things I can relate to there. I’m 18 and I was diagnosed two years ago, so I know exactly what it’s like growing up in your teens with hypothyroidism. I have hashimoto’s too.
I wasn’t going to go to uni this year either. Because of my stupid thyroid I didnt get good enough grades.
BUT I ended up at uni and I’m having a great time here. There have been a few difficult moments regarding social aspects and I feel like an outsider here especially at my accommodation as all my flatmates kinda get along and they don’t really talk to me or include me in stuff. My sister says this is because I didnt make enough of an effort- especially in the first week- but I really don’t know what I could have done differently. I do get so depressed too especially because I’m by myself (I moved out) but family and friends pull me through. I like to keep myself busy with work or hobbies which takes your mind off things. Why not take up a hobby or something you enjoy? They can be great outlets.
I also want to be a doctor too! I am determined not to let my thyroid get in the way of my dreams and ambitions and will keep fighting till the end. I am lucky to be given a second chance and hope I dont mess it up.
Although I don’t let my thyroid get in the way of things, I don’t think I’ve fully accepted or come to terms with it. I just see it as taking a pill in the morning but I know it’s so much more than that. It’s probably because straight after diagnosis I had exams and school etc and never got the time to think about it properly. My endocrinologist is pretty rubbish and all my doctors keep saying ahh theres no reason why you should be feeling like this- looking at test results rather than the person, so Ive kind of given up and agreed with them that my thyroid is “perfect” now. I don’t know if it is a good thing that I’m ignoring it like this, but it’s my way of coping I guess.
I hate my thyroid for my weight- Ive always had issues with my weight since i was a kid. Always fluctuating. I feel like ive given up on losing weight and now am kind of constant weight, which is good I guess. I feel like I wont ever be able to lose it and I will always be big. Its kinda depressing but I have to accept it.
I hate it when skinny people (eg my flatmates) say or think that they’re really fat because it always gets me depressed how they can go on a diet or exercise a bit and lose some weight immediately and I kinda envy them in a way for having that ability. I hate it full stop when skinny people say theyre fat and need to lose weight- its like HELLO??
Argh. Anyway, keep the faith, stay strong and determined, throw yourself into life because it’s too short to let this ruin it and I know it’s hard but try to remain positive! 🙂 all the best and sorry for the huuuge rant! lol
NS xxx
Luci,
What a courageous letter to write, you may have been robbed of your youth, you’ll never be alone while you got us here.
Life will probably never be the same as you know it, but you know what it’s what you make of it “Normal” I loathe that word with a vengeance because what is normal in today’s society. You have to adapt to your lifestyle and health it’s doable.
I’ve never been Abbynormal and that’s what makes me unique, we are all unique we all have something to offer no matter how we feel.
You will learn to change your life to suit you, there is no reason you can’t go onto do your medical degree, believe in yourself and take one day at a time.
Good call Jody on the gluten issue it maybe something you should get checked, at least that would be one less thing to worry about.
Great heart warming letter showing me you’re more courageous than you think.
Lollyx
Thanks for your support Lolly. Good words of advice. We love our thymmunity!
Love, love, love everyone’s comments!
When I think about Luci’s letter, a few things come to mind for me:
1) I wasn’t diagnosed as a teenager. I also wasn’t exhibiting any symptoms, so I can’t begin to imagine what it would feel like to have our respective thyroid diseases and cancers at such a young age.
2) As an adult, I have this disease and it derailed me. Of course, I am in the process of reclaiming my life and redefining it.
3) As a teenager, you’re just starting out. Either you’re in high school, or college or heading to college and you’re LITERALLY INVENTING YOURSELF.
I keep coming back to, as a point of discussion, how does a teenager with this disease, look ahead and see a bright future? How do they find their way through the shitstorm of their disease and create a meaningful, happy life? How do they remain hopeful and optimistic?
Thyroidians, this is the question.
Discuss
Dearest! WHEN you become a doctor, it would be my privilege to be your patient. Thank you for such an honest letter. My suggestion for continuing throughout all of this is to make your health your number 1 priority… To put yourself at the top of your own list. To know that we, here, on this site, will not ignore you or judge you, or belittle you. Read everything Liz Schau from this site has written regarding diet, and self medicating by way of food. Read Katie’s irreverence and delicious use of the word FUCK for a great tension releasing laugh. Try yoga…. when you’re too tired, just the deep breathing can be enough to unclog the fog, and return here again and again. I do. I have had your days, I understand the exhaustion, the social paralysis, all of it. Everybody at this site will “get” you. Sometimes it’s the only thing that counts… knowing that if I feel like shit, everyone here will get it! You’re not alone, and hopefully, there will be a consistently, effective treatment for this before you’re my age! And I really believe that youth is also a state of mind. I am sending love your way- your letter is deeply moving. I know you feel weak, but you are clearly very powerful.
Jess
Jess, your suggestions are the best. 🙂 Thank you for taking the time to support Luci. She’s got big things in store for her future, we just know it. A disease can’t stop her. It can only make things a bit more challenging. But clearly she’s a fighter.
Luci,
Regarding the gluten free–I just went cold turkey about 2 weeks ago and it’s not the big deal I thought it would be. It sucked this weekend when the boss bought donuts for everyone and I could only dream and drool, but for the most part it has had minimal impact on me. I do think I feel better, too, although clearly too soon to really tell.
Katie said:
3) As a teenager, you’re just starting out. Either you’re in high school, or college or heading to college and you’re LITERALLY INVENTING YOURSELF.
I keep coming back to, as a point of discussion, how does a teenager with this disease, look ahead and see a bright future? How do they find their way through the shitstorm of their disease and create a meaningful, happy life? How do they remain hopeful and optimistic?
To that I say, we all have crosses to bear, sometimes as a teenager, and (after a lot of therapy) I can say that you have to take a “shit happens” approach and move the fuck on. Control what you can control, and let go/deal with what’s left. I was “healthy” as a teen, but had to “grow up” due to a parent with severe addiction issues. I frequently had to care for myself and younger half-siblings because my mother was incapacitated and my step father AWOL. I say this not for any sympathy, which I neither want nor deserve, but to point out that our path is our path, and MANY kids get shortchanged, whether for health or something else. In the teenage years, I think it’s a crossroads for the rest of your life–you can let it break you/control you, or you can REFUSE to let it control/define you.
I never fit in during high school as a result, and I did better in college (where it’s more cool to be different, I guess). But ultimately I needed therapy to help me decide if I wanted to be captain of my ship, or a passenger.
Luci, I challenge you to be a captain. I think writing this letter shows you are already on that course. Of course there will be pain and heartache along the way, but when you look back, the balance will be in your favor. In the meantime, it’s one foot in front of the other. And you know any of us is here for you when you need to vent, need advice, or feel alone.
Luci, you may not feel like you are strong but your letter shows me that you are. I am an adult with Hashimoto’s. I know how it can turn your life upside down and I am so sorry that you have to deal with this at your age. I cried when I read your beautiful letter.
I felt like so much of my adult life had been stolen from me and I can relate to how it makes you feel when your family does not support you. Family support is very important, and it hurts a lot when they don’t. Having said that, you have to move forward from this, you need to own the hurt, feel the hurt and let yourself cry about it, and then you can “kick your thyroids ass” because you literally have your whole life ahead of you and you have to start building that life for you.
Don’t think you have to come to terms with never having sex or a career, or anything else, because you can have those things and more. Instead, try to slow down and focus on one thing at a time. As you know, it’s too overwhelming otherwise. Read about Hashimoto’s disease and especially how diet relates to that and your immune system. Liz has written many good articles here about food. You can also talk to people here at any time. Many of us have been through elimination trials so you don’t have to figure it all out by yourself. You describe symptoms that could be caused by intolerance or allergy to wheat/gluten and dairy.
Even before asking your doctor to test you, you can try eliminating them from your diet yourself. Write down what you do and the results. This can be very helpful to your doctor and he/she will take you more serious. First try cutting out wheat from your diet for one week. If you eat bread and creal, don’t eat those. Read labels and ask questions here. You may notice improvement within a few days. So may of us Hashi people cannot tolerate these foods. 60% of our immune sysetm is regulated in the gut and if we are not digesting these foods properly, we will remain sick. After you give that a trial, then cut out dairy and see how you feel. Remember to write everything down. Intolerance or allergy to these can cause similar symptoms as your thyroid disease, giving you a double whammy so it’s worth trying this.
These are things you can do yourself and I think it’s a good place to start on your journey to wellness and getting your life back. If you notice improvement then you should talk to your doctor about testing. Try not to focus on what you think you don’t have or can’t have because that never helps and will prevent you from moving foward. Try to live in the moment and see what you can do right now.
Remember, this disease does not define who you are. It is only one part of who you are. As you accomplish each task you set for yourself, you will start to see this and feel better about your life and future. We have given you a lot of advice and things to think about. Read each one and take what you need for you.
XOX
Lori
luci,
don’t you dare give up. we won’t let you. it doesn’t take some indomitable will, it just takes putting one foot in front of the other, one step at a time. i don’t care if your whole family thinks you’re bonkers, let ’em. keep trying to figure this out. keep researching and doing everything you need to in order to take control of your life. doctors have a lot of stress and hours on their feet, you’re going to need all the info and nutrition you can get. i agree with the assessment of possible food, gluten allergy. i was told some time ago that i had a problem with that and i ignored it. it got really bad. i had to schedule my life around the disaster of my stomach. i am now mostly gluten free (it sneaks in once in awhile and boy, do i feel it) and it’s changed everything for me. i have hashi’s, and i’ve had some seriously fucked up episodes with this mess. trust me, i understand.
keep looking forward and keep trying to find the answers. you have everything you need to succeed already inside you. i can hear it in your letter. lean on us. we’re here, and we care.
I’m loving all the support all you lovely ladies are giving Luci. It’s so touching to see you all go out of your way to offer advice and encouragement. Dealing with this disease in your teens has got to be so tough, especially when none of the people around you are sick.
Luci,a nice letter. These things are difficult enough as adults, I’m glad that I didn’t have to experience them as a teenager. But now I’m going to echo Robyn. I did other things, like have the police take my parents away when their addictions got out of hand, all while developing my own drug problems. So yeah I was discouraged and confused…..
I hear this over and over here and I feel outraged reading it. A long list of hypothyroid symptoms that ought to be able to be controlled. Like most post Graves patients, I have no thyroid. I take my synthroid religiously, and when I don’t feel right I let the doctor know. Today, although I have never quite felt like I did pre Graves, most of my thryoid symptoms (not all, but most) are gone. I’ll skip the synthroid/Armour debate here and just say that synthroid works for me. My endo has offered to try Armour and I have friends who swear by it. If I was dissatisfied with the synthroid I’d give it a try. And that’s my point. If you feel this shitty, then it’s time to try something else. Vitamin D, or diet change or maybe just a new doctor. learn all you can about your disease (prepare to be confused) from both alternative and mainstream sources. Get copies of all your tests and understand them. And don’t give up.
One of the purposes of DT is to vent, and venting is great. But find folks with thyroid disease who have treated it successfully. Pick their brains, find out what worked for them. This will mean talking about your disease, but why not. Your disease speaks for you when you are silent. Time to speak for yourself.
Recovery is possible.
Zari
Thanks Zari. Great words. 🙂
Luci! You are so brave and wonderful for writing this letter! I also recommend becoming as educated as possible so that you CAN take control of your health, body, and life! You can do anything that you set your mind to! A dr, yes! And you would be the best thyroid dr because it something that you deeply understand! A wonderful man who loves you for who you truly are…why the hell not? Good sex…yes, occasionally!(lol) Fight hard sister and do not give up! As someone who has a very supportive family(meals are always made so that I can enjoy them w/ my fam because of my diet) I feel so grieved for you. But anyone of your thyroid sisters and brothers are here for you. We love and understand you! Think about what the other ladies are saying about gluten/wheat allergies. It made a huge difference for me.
Start with you. Focus on you. Get you healthy first and I believe everything else, all your dreams and desires, will follow!
I cannot say what it would be like to be a teen with hashimotos. But I do believe this disease can define you in a much more positive way! It starts with you and the choices you make…YOU CAN DO IT!!! Sending love to you. Please keep us updated on how you are doing! your thysista, Amy
Luci, My favorite part of your letter, the very end of your bio “I still haven’t given up”, and that is what you have to stick with..Giving up is simply NOT an option. Do you have a good rapport with your doctor? That is the hardest part of the struggle for me, feeling like I have to handle things alone. That is why I come here, to listen, talk, cry, share, give and get support. Here, we feel your pain, and when it’s time to laugh about the stupid things that happen, we do that too. It isn’t going to be an easy road for you, but you have courageously come thru 4 years of fighting, and I admire your guts and spunk. If you can, I suggest finding one thing a day that is not related to the disease, to make you smile..start with just one thing. See if for 15 minutes you can do something to take yourself away. I know that even as few as 15 minutes can seem like a lot for me some days, but, you can look back and think..hey, I made it through those 15 minutes.
When your family and friends close by won’t listen and support you, come here, because WE will. Keep writing!! It does help to get it all out. When I write and then a letter is published and I look back, I wonder, where the hell was I when I wrote that? Writing is healing. Thanks for sharing yourself with us. We’ll be here to listen some more!
I’m so sorry I’m late for this letter being published. It’s impossible for me to reply to all your comments, but it’s important to me that you all know I read every single one of them and they all mean so much to me.
I choked up when I saw how many comments there are and, reading them, I’ve been crying all the way through. Like I mentioned in the letter, I don’t really get much support from the people around me, and it’s amazing and overwhelming to get so much support from all of you. Thank you all for your wonderful comments! I’ve been trying to cut down on internet lately because I feel like it often fuels my depression… But I’d really like to be more active in this community…you’re all amazing! 🙂
I haven’t tried going gluten-free. I have always loved food, and since becoming sick have regarded it as one of the rare pleasures I had left, the highlight of my day. I know that’s sad, but you’ve gotta grasp onto something…
I just couldn’t bear the thought of denying myself that, not after life had denied me so much. Especially since I was feeling quite pessimistic about the possible benefits 🙁 I did look into testing but all the info I could find was so frustrating and confusing (like everything else about being sick, it seems) – basically it said that you could still very well be gluten-intolerant even if the test says you’re not… And testing for gluten intolerance is really hard to come by where I live =( I have been thinking about it more intensely recently, though, especially since my body has been feeling worse, despite my mood being much better overall in the last couple of months…
Vitamin D I have checked and tried supplementing, but like just about anything else I try, it didn’t seem to make a difference 🙁 I don’t know…I’m sure there might have been something I was doing wrong…this is all just so complicated and overwhelming I can barely even find the strength to TRY to cope. But you all know how that feels already.
I understand what those of you who have mentioned how so many people get shortchanged for various reasons, even at a young age, mean about accepting our life path and making the best of it. I have started allowing myself to dream of a life after stabilizing my thyroid. I know it will never be like before, and I don’t expect my life to be like my friend’s. It is what it is, and I don’t ask for much. I just dream of going through whole days with my mind and heart at peace, without constantly worrying about something or the other, struggling not to fall asleep, or fighting the urge to cry. I really do think I’ll get there and achieve all that.
So no, I’m not giving up. Your comments are even more motivation not to =) Reading them has really given me hope and strength! Lots of love to you all!
hello, i know this is like, 2 years too late..
my name is paige, i am 15 years old, i have hashimotos disease. i am in year 11 and just starting my GCSE’s . i find it hard to be myself because i dont know who that is anymore. my weight has gone up massivly, my moods steep so low that i find it hard to even put up with me myself, i know how you felt luci. i feel as though im going to be alone for ever, trapped in a world of mixed emotions,. my bpyfriend forgets my moods so when i seem to be horroble he takes it to heart, but i just cant help it. i feel so alone, knowing i might never have kids scares me. i cant believe somthing so small could ruin so many years of my life.
Hi luci, I know you posted this 4 years go, but I just wanted to know how are things now?
Like you I was diagnosed at 15 ( with hashimotos) I’m now 17 and really struggling to see how it gets better. I have terrible moods swings, also I get bad headaches and shoulder pain. Sometimes the shoulder pain is so bad I can’t wear a shirt it hurts that much. I also feel very lonely as my friends don’t really understand, as they only see me on my good days. Like you I also worry about the future and having a non existant sex drive, especially when all my friends keep talking about boys. I have a good family support system but sometimes that doesn’t feel enough. So yeah I was just wondering if it does get any better?