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Thyroid, You Have Made Me Suffer and Stolen My Life
Dear Thyroid,
Oh Thyroid… Where were your shining numbers when I lost almost all my hair?
When I had so many bald spots that I had to wear a hat, and I hate hats. But you wouldn’t take it all, just enough to help me feel that much less human.
Where were your numbers when I gained all that weight no matter what I did? No amount or type of working out and or diets, no amount of sit ups, dancing, jumping, boxing why doesn’t the low cal, low carb, gluten free, dairy free, only juice, only water, work for you? What have I done to you to deserve not feeling beautiful, being able to life my head up and look people in the eye or having someone hold me? Rather than repulsed my my size?
Where were your numbers when when I had insomnia for all those years? So many years, my eyes still show tired, and even now on those bursts of sleep, so fleeting, so shallow, I am not rested. I don’t feel as if it was even worth it, but ahhhhh you force me to pass out don’t you, as a tease perhaps? not really to actually rest but just to see what its like?
Where were your numbers when all these years I have cried so many times, hiding from everyone I have ever known and feeling so ashamed to even be feeling so worthless and alone when nothing “explained” it? I’m tired of crying, I want so much to be happy again, I’m sure it was a reality of my smile at one time, was it not? was that a dream?
Where were your shining numbers when my body hurt so bad, they thought I had arthritis, along with other things. Where I could not even get out of bed and no amount of pain-meds kept you from hurting me. Why? I am not old and frail, yet you refuse to allow me movement unless it is painful and thought out while other people see me as just old, fat and old. Can they not see in my eyes my pain?
That’s right, less eye contact, I’m not worthy of others.
Where were your numbers all the times my words fumbled? When I couldn’t remember things right in front of me??? Ahhhh I see more joke, more just me being spacey. Well, I guess someone has to laugh, I just wish they would stop laughing at me.
I wish I could laugh again, I hear sometimes in my fleeting dreams my laughter. I would love to hear it again out loud.
Where have your numbers been while I have been slowly losing my strength? I need my strength. I have to do things to make me feel alive. I miss strength of bringing in groceries.
Lastly, where have your numbers been with all my mood swings? Do you have any idea how many people I have run from, who have run from me, when I cant explain and I so desperately want to when I’m so crazy but I’m not and yet… perhaps in the end I am? Do you have any idea how lonely I am now? How many people don’t understand this and so they just run, or use me as a joke for medication? Do you have any idea how deeply that hurts? How when I lash out in defence but no one sees that inside I’m screaming to please understand and stay because I need them? Do you have any idea how much that makes me not want to trust anyone or let them close? How can that ever be recovered?
Now…
After all these years of doctors pointing fingers at you, but you not showing your shiny numbers you decided to make an appearance.
At last we meet. I would like to punch you in the face. I would like to cause you all the pain you have caused me. But I cant do either of those things, and that is that much more frustrating.
How much more? How much longer until I feel… Human.
I don’t appreciate the false hope you offer by taking a tiny pill every day for the rest of my life that things will get better.
I don’t know how much fight I have left in me. If any, you have literally taken all my strength and drained my emotions,pushed away family and friends so It is just you and I. And you have been kicking my ass for years.
I was hoping that this doctor I was sent to, you know the specialist who had worked with thyroid issues for over 23 years would see you for the ugly life taking thing you are, but alas, I don’t even know if he saw you. His thought, he tells me, is I need to lose weight, better yet, lose my job, go on medicaid and get a gastric bypass as weight is my only issue?
As much as I hate my weight and the loss of who I once was due to it, I so wish it was my only issue.
So even with your shiny numbers you stay hidden. Oh thyroid, can you ever let me live again?
Please?
–Written by, Jenny
Tags: Dear Thyroid Letters, lives irrevocably changed by thyroid disease, suffering from thyroid disease, thyroid blog, thyroid depression, thyroid disease's impact on patient's lives, thyroid disease's impact on self-esteem, thyroid forum, thyroid frustration, thyroid hair loss, thyroid letters written by patients, thyroid support, thyroid weight gain
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19 Responses to “Thyroid, You Have Made Me Suffer and Stolen My Life”
Leave a Reply to Kieran
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Oh Jenny.
I read this with tears in my eyes. Both for myself because having had thyroid cancer and a subsequent thyroidectomy, I relate to every single symptom you live with. But also because i just want to make a big jug of margarita, sit with you and have a big hug and a chat.
You are so lovely to put this into words for those of us who live with thyroid disease but have terrible quality of life because of it and maybe even can’t summon the energy to write 🙂
From one embattled thyroid warrior to another. I just send you a hug and lots of love.
Bree,
I wrote it with tears, so many painful memories, and frustrations and well I’m a wee bit delicate (arent we all?- Thankfully!).
I would Love to have that jug of margaritas with you! I bet we could chat for hours sharing stories good and sad, and just being.
I’m so sorry for your battle, but you my dear are also a warrior! To battle cancer and kick its butt back! Hooray for you!
Big Hugs and love back to you!
Jenny
Very poignant, Jenny. You’ve told the story of so many of us. Thank you for your creativity in the middle of fighting for your life. We all understand, totally. I hope you’re well again sooner rather than later. Just know you’re not alone and blessings to you and your sick damn thyroid.
Linda,
Thank you. It is sad yet empowering to find I am not alone in this.
Blessing to you as well! Thank you for them.
I am finding hope, and all of these responses – including yours- (and website) have helped me in that.
Thank you.
Jenny
Jenny-
This is all so true. I am sorry that you are dealing with this. It is horrible that a gland can make us so ill.
The loss of family and friends is something that NOT ONE of my dr’s have thought about.
I sit here and daydream about the stuff I would like to do, need to do, have to do and can’t.
I also sit here and think, if I ever feel better, no..when I do feel better, how many of these people will ever have any meaning in my life again.
I have had life long friendships that have vanished, it is like you are lost if you can’t keep up.
It is very hurtful that no one can come and see you or call to see how you are.. but they can send you an invite to birthday parties, bridal showers, weddings, baby showers… Down right hurtful.
Hang in there, you are NOT alone. Thank you for writing it down, thank you for sharing!
Victoria,
Thank you for your response.
It is sad how much the doctors (as I am finding) have thought about the emotional pain this causes so many of us.
I agreed so much with what you wrote, It was so very similar to me as well. Thank you so much for sharing!! Your responses are so familiar to me (and I’m sure others as well here).
Your comment “It is very hurtful that no one can come and see you or call to see how you are.. but they can send you an invite to birthday parties, bridal showers, weddings, baby showers… Down right hurtful.” Hits so hard! I can recall so many times I have been there, and yet when I so needed someone, I was told they felt “I just needed time alone” sigh… I crave understanding from others, empathy on my down days.
You are not alone either, thank you for sharing your response.
Thank you for being you.
Jenny
Thank you!! I have wanted to say just this so many times. No, I am not heavy because I am lazy, undisciplined or overindulgent. No I am not dim, I am just a little fuzzy around the edges if my numbers are off. No, It was not all in my head, I did not need Prozac, I had thyroid cancer! I feel your pain. There is hope, there are those who get it, and will love you and will support you, scars and all.
Good luck.
Kieran,
I am so glad that so many are understanding. I love the “a little fuzzy around the edges”! I’ll be putting that in my pocket for later:)
I am finding hope, its such a pleasnat suprise from this letter.
You are also a warrior to battle cancer and kick its butt back! Hooray for you!
Thank you for your response! Much luck and happiness to you as well!
Jenny
*pleasant surprise My typing was faster than my spelling on that one!
You have perfectly described the last three years of my life since my diagnosis of Hypothroidism. Lost all my hair, my life, my will to live, my marriage, my friends, my self worth, my strength, my happiness, and i’m now alone and scared that i have no future. I feel like my life ended the day i was diagnosed with this horrible illness, that nobody seems to understand, or have any compassion for. Death would be a welcome relief from this nightmare, which is now my life. I’m so sorry to know that you have gone through the same thing.
<<>>
Debbie,
I want to say you are NOT alone.
I have only recently been diagnosed (4 months ago) myself, but have been suffering for YEARS. I know that feeling of deep despair, wondering where did everyone go? Why now when I need them the most?
Death is not a relief my friend, though again, I really do know where you have been. Many of us do on this site I am finding.
You are NOT ALONE.
I wish for you hope Debbie.
I wish for you peace in knowing that you are okay being you, your just having a hellofa time, but you are NOT alone. We are here.
Hugs and blessing to you dear.
Jenny
thank you so very much for writing this, it completely describe myself. I have felt this way for as long as I can remember but being diagnosed at such a young age makes me wonder if I would have even noticed a difference. if it wasn’t for the love of my son and my longing to be in heaven I would have checked out a long time ago. just know that you are not alone! and we fully understand your pain 🙂
best wishes !
heather
Heather,
Thank you so much for your response!
I am finding that I am not alone, who would have known a letter and its responses could offer so much hope? I know I never did. I am gaining hope.
I am so glad to have heard from each and everyone of you!
Thank you and best to you!
Jenny
Thank you Jenny for writing this, it describes much of what I’ve gone through for the past 31 years.
In the 1980’s and 1990’s before the World Wide Web and also when the TSH test (doctors always like to check the pituitary hormone)range was incorrect, my doctors would tell me they can’t find anything specifically wrong, but went ahead and diagnosed me with CFS, IBS, EBV, MVP, candida, and more over the years, but never thyroid.
When family or doctors would give me the look as if they couldn’t understand my concerns, I grabbed what was left of my hair and say, “THIS is NOT normal! Maybe what I have hasn’t yet been discovered, but what I do know for sure is that something in my body is not right, someday I’m going to find out what it is.”
Now I know that I was one of the unfortunate ones that has had a TSH in that range that use to be considered NORMAL and is now considered hypothyroid. But, despite it all, I am grateful for the WWW especially for educating me about my illness and why it hasn’t been diagnosed and treated properly for so many years, and also showing me that I wasn’t the only one in the world with this disease. What a relief!
Thank you for sharing, and I’m so sorry for all that you’ve been through. It literally just amazes me that there are *still* so many of us suffering with thyroid disease! When are all of these doctors going to start listening to their patients?! I actually had to fight with my doctor in order to get a referral to an endo., and thank god he seems to actually know how to treat thyroid conditions. Otherwise, my family doc would have left me with a TSH at the very top of the normal range and still feeling like crap. I wish you the best in your journey to find good health again, and good luck to everyone suffering from thyroid disease!!
Joyce,
Thank you for your response!
I’m so glad you found a doc that will be able to help- I’m still on the search but so glad I found all the information I have to take in and talk with doctors about! I think we have to educate our doctors, and then be sure we find doctors that are willing to listen!
Best to you as well! and thank you again for your response!
Jenny
I want to thank each and everyone of you for responding.
It means so very much to know that my experience is in fact sadly relatable to so many.
I am striving for better, still so flipping frustrated at times, but striving and hopeful now, knowing that even if its via web, I am in fact not alone.
Hugs to you all, and I’m thinking perhaps, its time to lift my chin (and yours all as well right?) We will be battling for many more years of awareness, We need to get armed with knowledge, I’m hoping we can break through, to family, friends and I plead as well that we breakthrough to the medical community.
I hope.
Thank you all for that for HOPE.
Hugs Hugs Hugs!!!
Rachel,
Thank you so much for your response! I bet we could talk for hours!
I have also been diagnosed with so many things as well, and do you know, when this result came back, while looking through my charts for the past 14 years, do you know that all over my charts random years the doctors actually wrote on many of my check up forms, “patient shows all signs of thyroid – test is norm” Not just one doctor, but several!!!! When my tests came back my doctor was very blasé and said (and I quote) “oh yea we’ve been thinking this for years” YEARS!!!!!?????
UGH!!!!
I agree about the WWW. I am finding more and more information, and I’m so happy yet frustrated about it. I can recall screaming at my docs as well “This isnt in my head, this isnt normal!”. I’m so sorry you went so very long without diagnosis, and all that you too have suffered. I’m so proud of you for continuing to tell the doctors its not normal!
I’m so glad for your response, it give me hope knowing I am not alone, and not the only one.
Thank you!
Jenny
I totally understand. I have been diagnosed with graves disease & they all told me it was anxiety or that im losing it. yah, im having anxiety because you wont help me!! There are days I just want to lay in my bed & sleep. I have a 2 year old son & am a single mommy so i force myself to get up. I have just lost a massive amount of hair & i cry every day. this disease strips your femininity away. i spelled that wrong but thats the last thing im concerned about is spelling! my doctor says it will grow back. oh really? everyone i talk to says you are lucky if it grows back & so here i am 36 & going bald. its devastating. it sounds so vain doesn’t it? its not about being vain, its about having hair for all your life & just losing it because of this butterfly gland in our neck. i hate it. i try to be strong but its hard. i hope everyone who reads this reaches out there hand to someone to just say they are there for you because i kn ow i have lost plenty of friends because of this. they just dont understand. thank you for your stories!