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Thyme For Literary Healing: Fear Of The Unknown

Post Published: 15 June 2010
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Category: Literary Healing for Thyroid Patients, Thyme for literary healing
This post currently has 24 responses. Leave a comment

Fear of the unknown with respect to our diseases. Let’s talk about what we’re afraid of: our diseases getting worse? Medications not being available? No cure on the horizon? The permanent side-effects of taking the medications we do? Never feeling normal again? Adjusting our expectations? Never falling in love or maintaining a healthy relationship? Career? Anything and everything that we are afraid of with respect to our chronic conditions and cancers, let’s discuss.

Let it flow, say what’s on your mind, don’t hold back!

Ready? Set. Write.

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24 Responses to “Thyme For Literary Healing: Fear Of The Unknown

  1. Prairie says:

    I complained to my therapist about the weight I’ve gained since RUI. She accused me of having a compulsive eating disorder because “the medication replaces the thyroid.” “If you were in a coma you would lose weight. If you ate 1200 calories a day you would lose weight.” I was feeling desperate but now I feel desperate and crazy. I am afraid no one will believe me that this disorder really affects your metabolism (clearly she doesn’t). I am afraid of becoming a huge blob.

  2. Prairie says:

    RUI=RAI. Maybe the mods can fix my typo.

  3. alisa says:

    I’m 21. I’m meant to be carefree and taking risks and tasting all the spices life has to offer, I’m meant to be beginning!
    I was diagnosed with Hashimotos this year and it has changed everything in my life. I also moved 1400km away from the nearest reliable medical facility and had a baby! Having a thyroid disease has crippled me and I was reassured that I would simply have to take my medication and be fine. 9 months later I am feeling no better. I have worried that the constant paralysing anxiety I have in any public place whether it be 1 person or hundreds will never go away. That there will be something else wrong with me and I will develop another auto immune disease which could kill me, like my mother who has leukaemia . I was never worried about my mortality until I had my son and my family, now I feel that life has been taken away from me and it’s not fair! I worry that I will have to live everyday of my life feeling the way I do now – old and sore and insanely tired. I worry that we won’t be able to have another baby, or have trouble falling pregnant, and if we do, will I be able to cope with another one as I have trouble with the one. I fear putting on alot of weight in the future, uncontrollable weight gain and feeling more tired, being perceived as lazy even though it’s something I can’t control. I don’t think I would be ever able to go back to work if I don’t feel any better, and I hate the idea of never having a career again, even though being a mummy is wonderful. I fear failing my fiancé – soon to be husband – Because I can’t do the housework and domestic duties as well as I should. I am worried about the possibility of having to have my thyroid removed and going into surgery. I am worried I won’t be able to be the kind of mother I want to be because I don’t have the energy or resources to play with my son, or teach him everything in life and I am scared that I have passed on the auto – immune disease on to him or his family! I worry about my eyesight which is failing everyday and it shouldn’t I fear it’s going to make me blind one day and the thought of never being able to look at my children again makes me loath my disease. I hate the constant headaches and migraines which make me useless for days at a time… and never get better. I am worried that every night of 1 or 2 hours sleep is slowly cutting my life short because I cannot function without it.
    I’ve spent the last 9 months worrying, being scared and not knowing what is going on. My thyroid disease was never mentioned to me as chronic, it was never said I would not be able to fix this, I was kept in the dark about my diagnosis, about my treatment about the outcomes expected. Now I realise I will have this the rest of my life and I will have to deal with it and live the best I can, so as worried and anxious as I have been I am slowly beginning to realise the fight I have on my hands and it makes me feel like a bigger, stronger person some days and other days I still feel sorry for myself and blame something out of my control. I most of all am scared that this disease will take away how I live my life and so when I do come to the end of the road I will have many regrets and wishes unfulfilled.

    I am scared I will never be able to take control again.

  4. Christina says:

    I am scared of my surgery tomorrow. I am scared of what I will feel like afterward. I’m scared that I will “lose myself” as I’ve heard so many of you say. I’m scared that my demanding job will be in jeopardy if I lose my ability to think quickly and solve problems and manage million dollar budgets. I’m scared that my new marriage will suffer fights that would not happen if I weren’t changing. I’m scared that loss of my thyroid and new medications will further complicate my ability to have the family I’ve wanted and waited for, for so long. I’m scared that on top of the 60 pounds I have gained the last two years that I will gain more and not be able to lose it. I’m scared that my usual ability to stay strong in the most challenging aspects of life….is gone. I’m scared of who I will be after I wake up from recovery tomorrow. I’m scared of it all.

  5. Debra says:

    I have lost my life to a disease that i was told was treatable by taking one little pill every morning for the rest of my life. That was 2 years ago. Fast forward to now. I’m so exhausted, all i can do is lay on the couch all day. Every joint and muscle in my body aches. I sleep 3 hours a night ( if i’m lucky ). I have severe depression and anxiety. And the worst thing i fear, is going bald. I’ve had hair loss for 2 years. I tried many different medications, and doses, to try to make it stop. It just gets worse. I no longer can leave my house. My hair comes out in handfuls every day. I leave a trail of hair everywhere i go. I’m terrified to shower, and i can’t even comb my hair any more. I’m so afraid of going bald, it’s caused me to attempt suicide twice. The depression because of this is unbearable. I was told as soon i went on medication my hair would start to grow back. It never has. I feel i was lied to when i was diagnosed. I was told it was no big deal, and to stop worrying about it, it would all grow back. It’s destroyed my self esteem, my marriage, and my will to live. I’d rather die, then be bald for the rest of my life. I’m scared and alone. I don’t want to hide in my house for the rest of my life. It breaks my heart when i see all the women with thyroid disease who have beautiful hair. I wonder what i did, that was so horrible, to have a fate like this. I’ve cried every day for the last 2 years, and the future scares me to death. The stress from this has taken a hugh toll on my body. I get physically ill when i look in the mirror. I don’t know the person looking back at me. It’s just not fair.

  6. landsman2010 says:

    Christina, I understand the whirl of emotions you must be facing right now. Before I had my TT in ’09 I thought my life as I knew it would change forever. It did indeed, but it changed in a way that put my life in perspective. Adapting to your new life takes time, in fact, I’m still adjusting. You will do great tomorrow and you’ll be well on your way to a successful road to recovery. Already you’re in control of the situation, just by having the surgery. You are strong for doing this and you’ll be stronger when you wake up tomorrow. There will be days of being upset and sometimes you won’t know what to do. You will “find yourself” again, to reiterate, it takes time to adjust.

    I’ve been on thyroid medication since June ’09, first taking T3 (Cytomel) for a couple months before my RAI then switching to T4 (Levoxyl) every day since August ’09. I’ve never had a problem with my medication. Working with your endo is crucial to get your meds titrated to your needs. I take a supraphysiologic dose of hormone bc it works as a tumor suppressor. Not sure what you’ll be recommended, but I’d be interested to hear your follow-up.

    You will do great and I have full faith in you! 🙂

  7. SanDiegoCarrie says:

    I fear everything that has been mentioned above.

    My biggest fear is trusting anyone who does believe me, what if it is me? I debate that thought day by day, hour by the hour. I know deep in my being that is is not me, but with all the mounting medical evidence since I was a child stating that it was all in my head – what if one day they use it against me & I will never be allowed to be me again?

    My fear is being locked up, again. They’ve taken my money, my family, my friends, my ability to reproduce, my sex drive, my career, and my trust when I checked in for a simple procedure & they locked me up instead & insisted I was suicidal. Once they let me go, the cops kept coming to check on me at the requests of dear friends that have yet to call me themselves.

    I have never been and will never be suicidal.

    My fear is that they want to be right as bad as I do.

  8. Christina says:

    landsman2010- Thank you so much for your kind and encouraging words! I would love to keep in touch. <3

  9. Amanda says:

    I think it would be easier and quicker to say what I am not afraid of now. 🙂

    I am afraid of:

    being hyperthyroid
    having nodules [scans say they are hot]
    umpteen scans and tests
    medical bills
    not being understood
    not being able to get my words out
    driving 1 1/2 hours to see an endo
    missing work
    not understanding every detail of what is wrong
    not knowing why I am hypethyroid
    losing my voice daily
    my heart pounding right now
    dealing with this for the rest of my life.

    and more that I can’t even put in words.

    thank you.

  10. Cetta says:

    I have no diagnosis yet. My TSH was “alarmingly low” in April and by the time I got an appt with an endo in May, she said I had to wait another month – and go off the 10 mgs of Prednisone I was on for Crohn’s – beofre she could do any blood tests. I go this Friday for the tests.

    I am afraid they won’t give me any answers.
    I am afraid they will call it “anxiety” and send me away.
    I am afraid my hair will continue to fall out until I am bald.
    I am afraid that I have Hashimoto’s and have been in a hyper phase for about 5 months.
    I am afraid that I have TED, even though the stupid eye doctor rolled his eyes at me when I asked about it.
    I am afraid my libido will never return and my husband will lose his patience.
    I am afraid I will have a panic attack in traffic.
    I am afraid that my adrenal glands have shut down.
    I am afraid of never sleeping through the night again.

    Mostly, I am afraid of never feeling OK.

  11. Dear Thyroid says:

    Prairie – Thank you for sharing so much of yourself with us, I’m so proud of you. You’re fears are very real, and you are not alone, my dear. I want to make sure that you know this. We’re all here for you.

    It’s terribly frustrating to feel like our doctors don’t hear us, and, especially our friend/family.

    Wishing you lots of healing good thoughts.

  12. Dear Thyroid says:

    Alisa – so proud of you, so, so, so proud of you. None of what you wrote had to be easy to share. But, you did it. I am in awe of your strength. I understand your fears. They make perfect sense. Having this disease is horrible. moreover, not being prepared for it is like a slap in the face.

    Again, I digress, you’re not alone. sadly, so very sadly too many patients aren’t prepared, are misdiagnosed and left terrified and alone.

    You aren’t alone. we’re all here for you to get through this with you and catch you when you fall. Every time you have a success, we’re going to celebrate with you.

    Wising you lots of healing good wishes

  13. Dear Thyroid says:

    My darling Christina;

    thank you so much for sharing your deep fears and concerns with us. I wish you didn’t have to go through surgery tomorrow and worry about what the next day will bring. all your fears are justified. We’re all here for you.

    Please let us know how it goes. Write every day and tell us how you feel. Keep writing, keep getting your feelings out and off your chest. Trust that you will find your way, even when you fear you won’t. And know that you never have to go it alone.

    Lots of healing good wishes and a speedy recovery.

  14. Dear Thyroid says:

    Sweet Debra – You’re right, it’s not fair; none of it. The fact that you’re so severely depressed is a testament to how wrong this disease is.

    I’m so proud of you for expressing your anger and sadness, and honest feelings.

    Please know that we’re all here for you. Please consider seeing a therapist. Speaking for myself, it helps a lot. Another thing i would love for you to please consider is making sure that you have all of your hormones and Vitamin levels checked, as well as your adrenals. I want to make sure absolutely no stone is left unturned.

    Though this is the hardest fight of your life, I believe in my heart that you, that all of us will find our way back to ourselves, even though it feels like we never will.

    Never give up, kid. we’re in this together.

    Wishing you lots of healthy good wishes.

  15. Dear Thyroid says:

    A Landsman, you’re a peach, a wonderful lifeline in the darkness. Thank you for reaching out.

    xo

  16. Dear Thyroid says:

    San Diego Carrie;

    thank you for speaking up and out about how you’re feeling and what you’re going through.

    Do you have a doctor/endocrinologist/therapist type person you can trust? When was the last time you had your thyroid checked?

    I am so sorry that you’re going through all of this. Please know that you aren’t alone. I know I keep reiterating this, but it’s important that you, and all of us know we aren’t alone.

    Wishing you only the best

  17. Dear Thyroid says:

    Amanda;

    thank you for your bravery; I know that list wasn’t easy to get out. I’m grateful to you for doing so.

    The more we write and talk about these issues, the better we are, I think. We learn, I hope, that we aren’t alone. Everything you’re feeling, so many of us go through.

    Are you newly diagnosed? Where are you at in your treatment?

    Wishing you good health

  18. Dear Thyroid says:

    Cetta – Thank you so much for sharing more of you with us. Way to go, kid.

    I understand those fears, you’re right. You want answers. You need answers, and a diagnosis, so you can make wise healthy choices about your future. Have you considered seeing a different endocrinologist or an integrative specialist?

    Please see the above comment where I mentioned getting tested for other things, too. Perhaps some of those apply.

    Wishing you good health. Please keep us posted and let us know how it goes with the doctor.

    Lots of healing good wishes

  19. Dear Thyroid says:

    I wanted to provide a few resources on this post because I think they might help.

    Thyroid nutrition archives: http://dearthyroid.org/?cat=13 Great column about various foods and how they affect our thyroids, as well as nutritional tips and ideas.

    patient rec’ doctors: http://dearthyroid.org/resources/patients-doctors/

    Mary Shomon’s top Docs list: http://www.thyroid-info.com/topdrs/

    Mary Shomon’s hair loss books (also for hair, please check the nutrition archives and look for coconut oil, etc): http://thyroid.about.com/cs/hairloss/a/hairloss_5.htm

    Please, if you need any resources, contact katie@dearthyroid.org. If you need additional support, please contact me, and be sure to join our Facebook/Twitter and Profiles pages (links above)

  20. tiggerg65 says:

    as i sit here reading all these post i just relized i too am afraid i have been so wraped up in tring to just live one day at a time Debra i too lost my hair all of it i know how you feel it has since grew back but not like before what i fear the most is dying and my 3 wonderful kids thinking their mom was a nut i hhad rai in 02 before then i could do things with my kids now all i do is sit i cant even cook for them anymore and they never complain i fear i will never find a dr who understands or even cares even getting on here is a chore to do my legs swell and hurt so bad i fear i will never be normal ( whatever that is ) again healthy i fear my husband will leave i am so hateful towards him i know i put him through hell some days i cant stand to be around him but so far he has stood by me i fear i will lose my internet and have no one to reach out to cause family and friends dont understand with the exception of my mom thank you dearthyroid for being here for us to reach out

  21. tiggerg65 says:

    to each other

  22. debbie says:

    Hi to everyone, I read all ur posts n cannot contol the tears streaming down my face, I’m newly diagnosed n felt so alone n scared.the tears are from sadness after reading each post, n I’m also happy to know that there is other people living the same way as I am, n also the kindess n support we give to each other,I’m so happy to be a part, I have no family or friends, but I now have a whole group of friends now!!that was 1 of my biggest fears that I would have no support to get me thru the bad days!so thanks 2 all of u for sharing ur stories, I feel so much better that I don’t have to face my biggest fear(being alone)xodebbie

  23. jerriean says:

    Hello,

    I was diagnosed with Graves Disease in 2006…. The life I had known has ended. I lost my job, they could not understand having to miss so much work and I had been with the company for 7 years and NEVER missed work and never even took my vacation. I was the strongest and healthiest person in my family and was called upon to take care of other family members that were sick. I had the RAI in September of 06, I had 5 nodules and they were zapped with radiation. I lost my hair and it has come back (this is the good part) it was long and very straight and came back with allot of body and waves!

    I cannot hold down a full-time job. Before my diagnosis I had NEVER been fired from any job, since my diagnosis, I have been fired twice both because I was hospitalized with the Doctors not being able to say when I would be able to return to work.

    In the last 12 months I have spent at least 6 months in the hospital in 6 different admissions. The first was for MRSA, that took 4 months to kill, then I was diagnosed with Pheocromacytoma (adrenal tumor)… that took three months to prepare me for the surgery, now I am still trying to recover from that, then I was diagnosed with TED and had surgery on the left side… that was 7 weeks ago today and I now have a staph infection in the left side of my face. The right side was scheduled for today and they have had to postpone it because of the staph infection.

    I would have never believed that my mind would ever contemplate suiside, but, really, how much am I supposed to deal with? I have been blessed with a great husband and luckily my kids are grown, but really, how much am I supposed to deal with? The pain is horrible and never ending, my back hurts, my knees hurt, my shoulders hurt and now my face and teeth hurt from the TED surgery….

    I also agree, that no one understands…. not even my physicians (all 6 of them)…. I feel like they think that I am a hyprchondriac…. I am not, I promise!!! I am sick constantly!

    Thanks for listening!
    jerriean

  24. Julie says:

    I’m scared of going on medication and getting worse. I haven’t began any medication yet, and I was hoping that things would get better once I start. But seeing these comments, and others on other site, I’m beginning to wonder if it’s worth it.

    I’ve been overweight my whole life, and I’m scared of gaining more…lots more. It’s hard enough to lose as it is.

    I’m worried my husband will get sick of me and my whining. I can’t handle pain — how am I gonna go if this gets worse?

    I used to get up and clean and go out, but now I have to ask my husband to help me around the house after he works all day. I hate it.

    Some days are real good…good enough that I don’t even think about this problem, then a day or two later, it feels as if I’ve been knocked down by a bus or truck or whatever.

    I moved to the U.S, from Australia, almost two years ago, and now this is happening. All I suffered from, in Australia, were ear infections. Was moving a bad move? I’ve had plenty of doctors check my neck (even in my physical so I can move here) and no one found anything…so how did a doctor find this a couple of months later?

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