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Hashimoto’s, Now Hear This: I Am Not Yours For The Taking. You Do Not Own Me. I Make The Rules. Not You!
(Written by Johna, Hashimoto’s Patient with Endometriosis)
Dear Thyroid,
“Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows what we have become.”
When I first called this quote my own motto, I was unaware that how true the words would ring for me. I am torn between what I have become, and what I want to become. What I want to become is a good wife, mother, daughter, sister, and friend. But, because of you, every 24 hours I wake up and fall so short.
You know when things started to change. I was simply along for the ride. You know, you wreaked havoc on my body as a 19 year old young woman. There I sat, at an OBGYN’s office and listened to the doctor tell me that endometriosis took hold of her, and there were cysts on my ovaries. I had no idea what that was. You heard the doctor say I was going to need a hysterectomy. What is that? Surely if it were serious I would be in the hospital, right? Only you know if you had other plans for me.
Oh, yes, you were there when I was gifted with my two children. You also saw my future children ripped away from me at the hands of my disease. At 24 when my body began to tell you that I was going into menopause, you knew that the hormones I was taking were not produced by me.
You were there when the new doctor was astounded that I had gone 12 years without testosterone. You heard his snide remarks “Everybody needs testosterone. Your husband is going to love you.” You were there when I was overly aggressive, and decided I was better off without testosterone. I decided I did not need HRT (hormone Replacement Therapy). Had you already begun your destruction of my intimate time with my husband? Had you already begun stealing my passion away?
You were there when I had a successful back surgery, and you were there during countless hours in back and neck pain thinking that it was from degenerative disc disease. My surgery had healed wonderfully, so why was my neck and upper back in so much pain? Had you already begun to make yourself known? You surely had me fooled into thinking those annual epidurals were going to help me.
You have been there every single time I have eaten something and experienced so much pain in my abdomen, I was doubled over. You really had those doctors going. I had Ulcerative Colitis, and dealt with flare ups ever since. I could hide from everybody but you. As I would be shopping, at work, or an event with my kids I’d experience the horror of not making it to the restroom in time.
You were present and accounted for when my I lost my grandmother, and was put on anti-depressants to help me cope. You were there 3-years later when I found out that I would have to be on them for the rest of my life. You were around when I thought my vision was going, and saw the eye doctor, the ear doctor, and the dermatologist. Were you already attacking my vision, hearing, and skin?
Then, April 2009 came, and I found out after being tested for Lupus that, although you were there, you were dying. I was diagnosed with Hashimotos’s Disease—you were attacking my body. You had a nodule on you, which didn’t seem to worry the doctor at all. She found it when performing an ultrasound that same day. I remember leaving the doctor’s office feeling scared, but told myself it’s no big deal. Lots of people have hypothyroid, right? You were going to teach me the difference between the two.
One year later, I look back on not just this past year, but practically my entire life. I am feeling hurt and angry with you. After a trip to my family doctor’s office I learned that I am a walking heart attack with high cholesterol and the facing 3 potential autoimmune diseases. What is autoimmune disease anyway?! I mean, really? I am approaching 40. Is this part of the aging process?
I mean, you are not supposed to be driving and forget where you’re going or pause for a few moments because you forgot where you are. You’re not supposed to lose that passion and desire for your spouse. I mean, that’s all men think about anyway, so it’s supposed to be that way, right? Good grief, after a long day at work your supposed to be exhausted and just want to fall into bed at 7:30. And, everybody knows that the older you get the more aches and pains you have. Telling a story several times and forgetting what you were saying, and not finding the words to complete your sentences is just part of getting closer to 40….I mean, really, 40 is old, right?
My hands are supposed to be wrinkled and dry…. They’re old. My hair is supposed to be brittle, dry and fallout…. I mean, I have spent my life growing this hair. You’re supposed to require a “blankey” at all times when you travel, and a sweater and blanket at your desk. When you’re old, you get cold and run the little heater at your desk during the summer. You’re supposed to take naps and be moody, and feel ill…. Aren’t all old people like that? We all know old people eat prunes… well old people are constipated…. That’s probably why they are ill.
I am supposed to need glasses and eye drops, and have the TV turned up loud. I am supposed to ask what people said several times, and if there is a bunch of noise, I still do not hear them. I am supposed to smile and nod like I know exactly what was said.
Of course, everybody gains weight as they age, even if its 30lbs in a year….that’s just part of it. You’re supposed to look in the mirror and realize that your youth has faded away, along with your waistline and your sex drive. You’re supposed to sit on the front porch in your rocker and sleep in a separate bed from your spouse at the end of the evening.
And, that voice that use to caress your children to sleep and cause laughter as the car next to you could hear you at the stop light….its supposed to wither away, into a scratchy hoarse voice you hardly recognize.
Well, today I say NO…….NO, NO, NO, NO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am not old! I am not even 40, and even if I were; 40 is not old. You will no longer disguise yourself as old age. I have your number, and I am calling you out. What I have become, is because of the crisis of your death. It is your fault that my kids think they have a sick Mother. It’s your fault their friends ask them why their mom is always in bed. It’s your fault that I have missed precious moments with them I can never get back. It’s your fault parents think I am not involved in their activities because I don’t care.
Your apparent lack of producing what your supposed to produce has caused me to carelessly toss out words to them I cannot take back. You’re the one that has held my precious, passionate time with my husband hostage. You’re the culprit behind the image I see in the mirror. You have hidden the person my husband married and replaced her with a person he does not know or understand.
You’re the reason my immunity is not even tough enough to fend off a cold without putting me in bed for days. You’re the reason people at work wonder “How can she miss so much work?” “Nobody is that sick”!
You’re behind the constant drama in my life. You hit the green button on this rollercoaster ride and I haven’t been able to get off. You’re the reason my shoulder blades and neck constantly feel like they are being pinched. You have put me to bed many times, in a cold, silent, dark room to fight off a migraine. You are behind every time I have had to change clothes because of an accident. You’re the reason that my daughter and husband get to see the laundered clothes in the sink. You’re the one I have to thank for the pain and exhaustion I feel after exercising. You’re the reason people think I am fat and lazy. You actually had me believing that myself. You’re the one that puts me in bed after cleaning my house. You’re the reason my husband and daughter are left to take care of most of the house work.
You’re the reason I cannot finish a complete sentence and waste countless hours walking back into a room because I forgot what I had gone in there for. You are the reason for the panic that comes over me in those few moments when I am disoriented. You’re behind the fear I have when brushing my hair, shampooing it or blowing it dry. You have even seen to it that when I wear my hair in a ponytail it breaks off and falls to the floor. Your slow dying death is the reason I choke easily on my food and drinks. I have constant dry mouth and dry eyes that you have made impossible to hydrate.
Your hold on me has turned into feeling like somebody has their hands around my throat or is pressing on my throat and swallowing is uncomfortable. You’re the reason that the pretty necklaces that my husband has bought me sit in my jewelry box, and not on my neck. You have seen to it that I am miserable when wearing them, or even a shirt that is close to my neck. You’re the reason my knuckles have begun to enlarge and ache as I work on my craft projects. Those same knuckles you have inflamed have, on occasion made it difficult to get my wedding rings on.
I could go on and on with the ways you have sought destruction in my body and mind. You are dying a slow death. As this funeral approaches I am equipping myself with the knowledge of your disease. I am seeking answers and becoming an advocate to inform others about your tirades. I am making certain that family members have been provided with the information that your disease could be inherited.
I am slowly accepting the image you have left me with in the mirror and changing what goes into my body and mind. You have brought me to a place where the most important thing to me is my family.
I am slowly learning that not everyone will understand my trials, and there will always be ignorance. I am at the beginning of assuring myself that it is alright for others to think, oh well it’s not so bad. She just needs to do this, and that, and gosh she never does anything, she cannot feel that bad, or whatever else they decide to vomit out of there ignorant mouths.
I am at the beginning of this journey and telling myself each step of the way that its alright to feel the way I do. I am also slowly teaching myself to take advantage of feeling good. I am learning what really is important in life and what unconditional love is all about. I will continue to strive to be happy with the image you have given me to look at in my mirror.
I am learning that being a good wife, mother, daughter, sister, and friend is about taking advantage of what you have been given and conquering.
I have resolved to be a fighter.
I am learning more every day to be compassionate of others. I have also become a protector.
I will use my knowledge to protect my daughter from your ugly fate, just in case you decide to pass down your crisis to her. She is a fighter, and will not come out a coward because knowledge is power.
I will close this with the words I started with: “Great occasions do not make heroes or cowards; they simply unveil them to the eyes. Silently and imperceptibly, as we wake or sleep, we grow strong or we grow weak, and at last some crisis shows what we have become.”
Rest in peace,
Shades of blue
(Somebody’s hero)
(Bio) My name is Johna and I have Hashimoto’s Disease, diagnosed 1 year ago in April. Dealt with Endometriosis at the age of 19 and had a complete Hysterectomy by the time I was 24. Several years ago I was diagnosed with Ulcerative Colitis. I have also been informed this week that there is other autoimmune disease showing up in my body. I joined your Facebook group this week and became a member of the DearThyroid Community. Again, I want to say THANK YOU for being such a wonderful support system. To write this letter was difficult and started a healing process for me. The letter and comments that I have read have given me comfort and assurance that I am not alone. There are others that are walking down this path and taking this journey with me.
Tags: autoimmune diseases, Dear Thyroid Letters, difficulty getting pregnant, endometriosis, Hashimoto's diagnosis young adults, Hashimotos patients, hormone replacement therapy, hypothyroidism, literary community, ovarian cysts, pregnancy thyroid issues, thyroid menopause, thyroid nodules, thyroid support, thyroid symptoms aging, ulcerative colitis
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26 Responses to “Hashimoto’s, Now Hear This: I Am Not Yours For The Taking. You Do Not Own Me. I Make The Rules. Not You!”
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WOW, this one really got to me. I have Hashi’s as well and at the age of 24 I am often told your just way to young,yet all the symptoms are highly apparent to my son & boyfriend. I can relate the most to explaining myself to others including family they absolutely do not get it! I try to send them articles and entries I find on this website & recently it has been a great help. Learning to accept & find others who accept and support you as well is key. Thank you for this,I cannot fully relate but feeling “old” is one of my main things. I know I am not old at all but my body sure does feel like it.
I was recently diagnosed as having Hashimotos, and you really touched home by speaking on so many of your symptoms… I dont feel like I am so alone now in my experiences. Great article, and thanks for sharing.
Johna, thank you for sharing your journey with us. Though your thyroid has continually tried to bring you down, your fighting spirit shines through. The way you are standing up to your thyroid is truly admirable. The ownership you are claiming over your own life is inspiring. We are fighting with you!
xoxo,
Joanna
Jennifer & Michelle I am so thrilled that my letter touched on some of the things your dealing with. I will say this was very difficult to write and some things I did NOT want to share, but I did in hopes that others would know its alright and these are symptoms that you will deal with. I cannot express what a positive impact it has made on me to know that others are dealing with all kinds of things and fighting! Although there will be those that cannot fathom what our days are like, you can know that you have a “butterfly friend” that knows exactly what your going through. Jennifer I am so sorry that your family is not compassionate. They are just ignorant to all of this. It is so much easier for them to deal with, “she is having a bad day again or she is sick again” than face the truth. I am sure in the midst of learning about Autoimmunity they become afraid as well. My husband, family, and best friend are compassionate and I am so fortunate. Know what a courageous woman we think you are for making this journey alone. Michelle you don’t have to feel alone you have many “butterfly friends”.
Joanna thank you so much! I am inspired by all of the Dearthyroid community. I think it is such a powerful place for heeling, courage, and information.
I am 24 and like you was diagnosed with Hashi’s in April of 2009. I really enjoyed your letter and know that I am not alone because now I know there is someone else who has been dealing with this for a year just like I have. Thank you for sharing your experience!
Dear Johna,
I totally feel your pain, I am glad that we are not the only ones, andnot CRAZY.
I was dx with endometriosis at 14, hashimoto’s at 21, and now 29 with multiple auto-immune issues. I want a hysterectomy also, but because I have not had kids, they are all hesitant, which I am still a little.
Hang in there! We are given strength everyday we show others how strong we can be. Even though our bodies want to put us in a coma! Remember just take everything hour by hour.
In junction of the Dear Thyroid Clan, keep the thoughts rolling, they help us all. A great support grooup!
Siobhan
I am speachless. This letter really hit me. Thank you for shareing so much. I am amazed at your strength and plan to use your letter as insperation to know I can fight too. I really don’t know what I would do without Dear Thyroid. Even in the darkness that I have been feeling for too long now..this and the facebook group give me hope that there is light at the end of this long tunnel. Thank You!
I had Hashimotos diagnosed when I was 38 years old. I was told the thyroid replacement would take care of ” everything”. Sure. Last March ,after fighting with my primary care for a referral to my ENDO, It was discovered that I had Thyroid cancer. MY BLOOD LEVELS were perfect due to replacements and only by raising hell was it found. OK I am now 57 ( yes almost 20 years with Hashi ruining my health). I gained 85 pounds in those 19 years, lost 65 of those before the diagnosis by starving pretty much, My surgery was 100% successful last Sept, but catch this.. ugly hateful Hashi had inflamed all the way into my chest and to my chin. The surgeon was brilliant and he took hours and hours to do what was supposed to be quick, and I came out with a new neck ( you can see it!) a nearly invisible scar. OK – HASHIMOTOS had strangled the cancer cells, cutting off their blood supply preventing any lymph involvement. My endo dismissed me as ‘fixed’, and I have gained back 20 pounds since September. I work ard to stay level. Other things remain, depression ( Cymbalta helps) and the auto immune diseases I acquired in those 19 years: B-12 Deficiency ( Pernicious Anemia- shots twice a week), fibromyalgia ( I refuse to accept this) ,peripheral neuropathy, blurred vison in one eye. IN SPITE of all this, and my hate for HASHI, I just did a weekend of performances and am a positive person. HASHI was part of what caused my divorce after 32 years, but mostly me taking back my life from HASHI and all it’s nasty partners. TRY really hard not to dwell on things, but get checked and FIGHT for your self. YOU know your body, no one else. I am glad I fought for mine. At 57 It can’t stop me, although HASHI is gone ( I assume it’s gone if my thyroid is?) I will pound down these issues. If you have weird symptoms, tell your Doctors, if they won’t listen GET NEW ONES. I know I have a file 6 inched thick and I pay them so I DON’ T CARE. Hang in there!
Ellie
PS I am 57. I am NOT OLD , so you can’t be. If you find out why it hurts so much to eat sometimes, give me some tips. I’ve had every test including upper endo and all looks well. Mostly it is, bit SOMETIMES eating the most bland of food will double me up with the first bite!
Johna, I read and reread your letter so many times. The tears come in the same quantity each time I read it. I had an appointment with a Uro Gynogologist today and ask about an Endocrynologist. She said “That’s strange that you should ask”. Her mother went to one last week and she is going to get the name for me. I want to get tested.
You are such a precious person and I am amazed at the strength you display when you are in pain.
I can’t even read this and every single person’s responses without crying. Going from doctor to doctor, self-education, trying to be a good spouse and friend and parent… every single thing you are all saying is just resonating SO MUCH.
THANK YOU for being so honest and vulnerable and beautiful.
I just got back from a scary doc apt… and I have 2000 million more to go. And they are all because I was dismissed as “too young and too healthy” and because I didn’t stand up for myself back before it all too hold in my body.. so now I’m FORCED to deal with it… and now I AM dealing with it.
And – so are you.
I’m so amazed that each story that we have is so unique yet feels and sounds so similar… many hugs all around!
THANK YOU FOR SHARING!!!!
Your strength will see you through…I admire you…I am proud to be in the presence of someone who has endured so much. This community of “broken toys” has formed such a tight bond that when we stand togehter we are no longer broken but become truly beautiful because of and in spite of what we have endured, what we will endure, and what we hae yet to face. As a family -here- we are victorious
Thank You everyone for commenting on this letter I was diagnosed 3 mos ago with hashimoto’s. started feeling like crap almost 4 years ago but even worse 1 year ago dr. just decided to test me a few mos. back because of health assesments for our insurance thats when she found that My thyroid was severly low no b12 in my system no vit d, anemic, and 4 years ago I started with the colitis and I in the last 3yrs really watch what i put in my mouth because it seems everything effects you.. I have every last symptom you all have indicated in your letters and until i read this today I thought I was going crazy…. I am 34 yrs. old and yes the end of last summer I started feeling lazy tired aches and pain and I attributed it to me not working and being a stay at home mom the last few years… but now i see thats not the case, its the hashimoto’s disease.. Also the I told the dr. that my menstrual cycle was messed up in the last 6 mos. so thats when she said also will test your thyroid also. And to add to that my mom has been hypothyroid the last 35 yrs of her life diagnosed at 20 yrs of age never once said anything to me in all the years of how she was feeling and now since i have been diagnosed she doesn’t believe all the stuff I tell her I read on here.. but looking back on life she has had all the symptoms but no dr. has ever payed any attention to her on these issues it just amazes me now looking back through my child hood and young adult years with her being sick.. And when I started on the meds about 1 mos into it my vision started getting reallt bad i thought it was the meds I was on or the time of day i was taking them started switching around no relief it is horrible. But glad to here what i read on here it is the hashimoto’s thanks for the insightful info today ….
Johna – Thank you so much for sharing your thyroid journey with us. I’m so sorry about everything you’re going through. I absolutely love your unwillingness to give up.
I really felt like I was a part of your experience – going through it with you. Thank you for that gift.
xo
You are truly the “Best” definition of “Courage” that I have ever seen, heard or read about! I am lucky, beyond measure to have you in my life! You are truly beautiful, starting from the inside, and manifesting itself on the outside. Stories like yours remind me of other incredible women… like Esther, Abigail, Hannah, etc. etc. I love you..gigi
Thank to all for your words of encouragment. It has been so wonderful being apart of the experience today of seeing people come to the realization that we are not alone and we are in this together. Traveling this journey because we have been brought together for the very purpose of lifting one another up and providing information to all, not just those that have been “diagnosed”. I hope that each of you will find peace and purpose in what your going through and always know, your not alone. Mother & GiGi thank you for your support, I love you both! Dearthyroid thank you for giving me a place to bare my heart to those who understand the most. I will continue to support this site and fbook page, I will continue to inform others, and I will continue to fight for my life back. Because : “I am not crazy, my throid is” & “the symptoms are part of the disease, not who I am”. Hugs & butterfly kisses to all!
Dear Johna,
I apologize for not being able to read this earlier. I just got through reading it now and it’s like Dejavous. It’s like looking in the mirror at every word you wrote in regards to this!….I am still fighting to get a solid diagnoses, but every symptom, every pain, every moment that you described in this letter is every thing I go through on a daily basis. I almost want to print it out and take it to my next appointment with my Endo. Too bad I have no ink! I am inspired now to make a detailed list of my symptoms however. I am still going through the emotions of this whole thing. I want to cry or scream sometimes and then others it’s like, well, I have known about this since about 2000 and it’s been underlying, so I guess it’s just something I have to live with. I wish it wasn’t so hard for doctors and people to understand. I even wish that there was more availability for good doctors and good medicine that is covered by medicaid. I just keep holding on to hope and striving. You sound like you are a very strong person with a strong spirit. I am grateful to be able to read this letter and thank you for having the guts to share it.
~Joanna H.
Sorry to be late on this as well..my sleep schedule is sooo messed up right now I don’t even get on here until night!
Thank you so much for sharing your personal experience! I too cannot read thru it and all the replies without tears filling my eyes. I was diagnosed with “thyroiditis” in 2007, but have always had emotional issues…who knows now if they were linked? However, I went under-treated until 6 months ago (11/09)after my last child I ended up in the ER…twice. Told I was crazy with a chemical imbalance and given Paxil. I literally felt as if I were dying..everything was shutting off..I cannot describe what was happening to me. Finally found a wonderful holistic doctor. Adrenal insufficiency, Hashi’s, many vitamin deficiencies, leaky gut syndrome, the list goes on. How I wish I could go back and have really pushed for my health..not just “dealt” with it & instead only took care of my family.
Now my family (4 children) barely have a mother. The part of your story , reading words about being a mother & wife tore me apart…I could have written that.
Most days I feel like a failure…I cannot do all the things I want to do…so much missed precious time with my kids.
Never knowing how my day will go when I finally crawl out of bed.
No support, but from my husband..he sees what I going thru & never questions me or thinks I am being dramatic.
PS: I am so glad to read your acceptance…strong will. I hope I can get there..right now I am stuck somewhere in between!
Thank you again for sharing..it is like a huge hug every time I read someone’s words & they describe me..someone gets it!
Dear Johna,
What Truly courageous letter. I can so relate to many things you have said one about the endometriosis the symptoms although I don’t have Hashi’s but Graves so many things are so similar.
I hope now that you have finally had a dx and are receiving treatment that you can begin the road to welllbeing. You have been through so much for one so young at the time I hope that you have the understerding and support of all your family it’s hard to be on your own with any disease let alone thyroid.
Thank you for being so open and frank and sharing your letter with us.
Sorry this is late my internet was off and on yesterday.
Lolly
Johna,
I am struggeling through the tears to just write. To make this short and less painful, you have written my life. I have always wanted to write a letter such as yours, thanks for doing for me 🙂
i too was diagnosed in the past year. Hashi’s.
Thanks for everything,
Terah
Surfingmama!
Terra, I’m so sorry that this letter exemplifies your life. I wish it didn’t. I am so proud of you for connecting with Jonah and sharing a bit more about you.
As a recent inductee into the jacked thyroid club, how are you handling it? Do you need support?
I hope one day that you do feel ready to write and submit a letter. Maybe it will help.
Lots of healing good wishes,
Katie
I can relate on the emotional side of this disease! Sometimes I want to cry! A lot of the time I feel alone as I try to come to exceptence but at the same time experience new synthums like forgetfulness. I wasn’t expecting to deal with that at all! The other synthums that I have experienced on and off like the energy ups and downs and brain fog come and go so I can deal with them. I just hope the forgetfulness goes away and comes and goes as the other synthums do. I also still experience swollen ankles and feet that change from being really bad to not so bad and back to pritty bad. the emotional part for me comes from connecting with some who have delt with this for so long that they are at the point ware they just know what things trigger synthums or if they need a change of dose in there meds. I just wonder how I am going or if I am ever going to except what this disease has done to me! Thanks again for sharing your story. I find it vary therapeutic to comment on the statuses that dearthyroid posts. I look forward to many more posts from you!
Wow, I not alone out there, hashimotos it’s not fun having it, really hard for people to understand it. It’s not normal thyroid at all. It leaves you so tired, you hurt and have pain and if you complain and get scared and tell people they come up with something not very nice to tell you. I so relate to the memory problem. I drove somewhere and didn’t even remember how I got there. It mess with you mind and then you get told you have something else than what it is. You get confused and you get frusrated and all of this is going on and you lose friends and people start calling you horriable names. You can’t explain you can’t get the words out. Your body is turning on you and you don’t know why. Thank you for your story of you life, I starting crying because you have it and I got it because I took myself off of thyroid and my body turned on me even more. Thyroid failure and hashimotos I was told. Was also told there’s no blood test for hashimotos you have to start having the problems. Well I did and I lost me while this illness was quitely taking away my life and effecting my family. You put into words what I have been feeling and doing. Now the guilty of having this and knowing that most of my life has been a roller coaster ride. Thank you thank you so much. You gave me hope, you wrote with honest feelings and you loved us enough to share. Wow you know how to care! You are an awesome woman!
I want to thank you what a wonderful writing you have done. It will help so many people.
It sounds like your family is beside you.
hope you get the care you need.
Watching my sisterinlaw go through what she has been going through has been a nightmare but, she is my sisterinlaw and I will help as much as possible.
Thank you again for your letter
Thank your for sharing and for being able to be an adovacte.