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Rewrite your Thyroid Story

Post Published: 17 May 2012
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Category: Join The Discussion
This post currently has 5 responses. Leave a comment

Whether you have thyroid cancer, Graves’ disease, Hashimoto’s, a thyroid condition or anything thyroid related, if your life has changed, radically or otherwise:

  1. What if you could rewrite your story?
  2. How would you tell it? How would you do it over?
  3. What changes would you make?
  4. What have you learned?
  5. What was taken from you that you need to reclaim?
  6. What would you tell your thyroid?
  7. What would you tell yourself or your doctor, or your caregivers?

Rewrite your story as you imagine it or fantasize about it. Speaking for myself, I fantasize about it. I go back to many moments, but three stand out the most… When I was never tested, though my WBC was through the roof and when I was lied to by my doctor about having a NORMAL thyroid. Years later, evidence surfaced to the contrary. I wish I knew what a thyroid was and what it did. I’d go that far back.

What about you?

Submit your stories in comments or to submissions@DearThyroid.org. We will publish all of them. Maybe we’ll find some healing, laughter and tears along the way. We’ll never know if we don’t try.

 

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5 Responses to “Rewrite your Thyroid Story”

  1. RAINEE says:

    If I could rewrite my story…..In 1988 I began feeling unwell..at that time it was a mental unwellness – or so I was later come to believe. I was doing my best to raise 2 small children, and failing. Soon after that I found myself in & out of hospitals for depression…being given drug after drug…in efforts to silent me. In 2002, 32 later, after losing my pride, dignity and self-worth and confidence….I was given my diagnoses of Graves disease. I didn’t even know I had a thyroid…much-less what it what. I was going to quickly find out.
    I look back now and think –why
    why didn’t I know I had a thyroid and what a thyroid was.
    why didn’t I take a more pro-activity roll in what was going to be – My Thyroid Life.
    why didn’t I EDUCATE myself, right from the moment I found out.
    why didn’t I Have A Voice…..I Did…..I Just Didn’t Use it

    Over the past 35 years, I have been given many labels by the medical profession and non-medical. : Unstable..major depressive disorder..crazy..untreatable…the best was when I was told by a doctor with over 30 yrs experience..””I’ve never seen anyone with so many things wrong with them as you”” (trust me he wasn’t being kind or concerned).
    But I’m a fighter..and I will continue to be a fighter.. I will be fighting to disease till the day my angels came and carry me away.

    • Sue says:

      Your story hit home with me. I was undiagnosed for 20 years. It is so frustrating to think that there are so many others like us out there, searching for answers only to hit brick walls. Finding a doctor that will help negotiate this battle is really hard, especially if one does not feel well.

      I hope you have found some help. I did but it took a thryoid storm to get it.

      Best wishes to you.

  2. Rachel says:

    Dear Thyroid,

    Hasimoto’s is not going to get me.  I will stay strong and not give in to this disease.  

    I have finally come alive after four long years of suffering.  I can’t believe I almost gave up.  I really thought I was going crazy.  I felt so much shame for not being able to manage the simplest tasks and daily routines.  

    I lost control of my life.   I suffered from paralyzing anxiety attacks.  I couldn’t explain the completely devastating exhaustion, the aches and pains  in every joint, the weight gain, constipation, brittle nails, hair loss, dry skin, the extreme sensitivity to sounds, lack of patience for anything, and the brain fog…I always felt guilty for not being able to “buck up” and get over myself.  I felt like my doctors didn’t believe me.  My Endo gave me the “I think you’re eating too much and need to exercise” look.  My GP wanted me on anti-depressants.  

    I lost all the joy in my life.  I felt completely incapable of taking care of my husband, my friendships, my house.  I doubted my ability to do my  job and came close to losing it.  Where I once was the life of the party. I became embarrassed to go anywhere or see people, even those closest to me.

    I felt dead.  I missed out on four years of life…afraid to get up in the morning, afraid to make choices and trust myself.  

    I finally found hope working with a nutritionist and a soy free diet.  As a vegetarian for 18 years I’ve had to make some difficult choices.   I wish my doctors put more emphasis on nutrition when I was clearly suffering.

    I know there will be more battles.   I vow to educated myself and fight with all that I have.  I will have patience and compassion for myself when things get rough.

    Sincerely,
    Rachel

    • EricaButler611 says:

      Rachel, I love your post, it was like reading a summary of my life! I am in the same boat and even though I am diagnosed I still feel crazy! Keep fighting and know that it will get better!

  3. yallolorry says:

    Dear Thyroid and Rainee and Rachel,

    I can so relate, I was first ill in my twenties, I spent 2 months in bed, exhausted, my (much older) sister and brother both had thyroid disease but we’d never talked about it. I didn’t know what a thyroid was or what it did, it never occurred to me that I needed to know more about it. That seems bizarre now!

    Given the family history I was tested back then, but when the result was “normal”, it never occurred to me to dig deeper.

    Funnily enough I lay in bed craving seafood every day….. Now I wonder if my thyroid was craving more iodine but I’ll never know for sure.

    I got out of bed, I went back to work, I continued to battle every day to have a vibrant career and social life, and I achieved those things, taking time out to rest when I needed it.

    I kept my head above water, I was successful to a degree, but things became too difficult in my early forties. It all came tumbling down. I’d seen myself as a warrior queen, shining brightly, getting things done, suddenly I was tipped out of the boat, drowning and lost and utterly confused, unable to think straight, feeling pretty much useless. (I did a painting about this)

    If I could re-write my story, I’d love to think that something could have been done back then, when I was 26, maybe something dietary, maybe a different lifestyle choice, maybe getting on thyroxine earlier…. something that could have given me better health overall during those years where I was struggling without ever knowing what was wrong… and something that could have somehow prevented my ultimate crash.

    But then, to be honest, the things I’ve done and learned during the actual journey I’ve taken, they make me who I am now and I can’t see I would have ended up where I am, with what I’ve now got and the things I now know, any other way. It’s been tough but would I really change anything? I don’t know.

    Life is what it is. Light and shade. Storms and sunshine. Shipwrecks and wonderful discoveries.

    I actually do feel better now than I did when I was first on here, still not 100% but I think I may be reaching some sort of equilibrium I can work with. With compassion and patience for myself and ensuring I am as educated as I can be (three good watchwords, thank you Rachel), I think I’ll take this reality over any fantasy, this is all I’ve got. I choose my life. That makes me feel more powerful within it.

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