I am Hashimoto's Letter

Gena Lee Nolin posted the following letter on her Thyroid Sexy Facebook page.  I find comfort and support in the words, and they remind me that there are many other people, who are suffering from many of the same debilitating and annoying symptoms that I deal with each day. This letter can also offer an explanation about the illness when you are unable to find the best way to articulate the words to family and friends. 

I Am Hashimoto's 
Hi.  My name is Hashimoto's.  I'm an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid. I am now velcroed to you for life. 
Others around you can't see me or hear me, but YOUR body feels me.
I can attack you anywhere and any way I please.
I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
I can make you feel very anxious or very depressed, too. I can also cause other mental health problems.
I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don't discriminate.
Some of my other autoimmune disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons:
That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I'm here to stay.
I hear you're going to see a doctor to try and get rid of me. That makes me laugh.  Just try. You will have to go to many, many doctors until you find one who can help you effectively.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless - that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That's probably me.
Can't get pregnant, or have had a miscarriage?
That's probably me too.
Teeth and gum problems? TMJ? I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating I am and how sick you really feel.  In all probability you will get a referral from these 'understanding'  (clueless) doctors, to see a psychiatrist.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I am.
Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago", not hearing that you said 20 DAYS ago.
They'll  also say things like,  "if you just get up and move, get outside and do things, you'll feel better." They won't understand that I take away the 'gas' that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they'll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a "normal" person, and can't remember what you were going to say next. You'll be told things like, "Oh, my grandmother had that, and she's fine on her medication" when you desperately want to explain that I don't impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE'S taking, doesn't mean it will work for you.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I am Hashimoto's Disease.


  1. Oh so true, I'm going to show this to my family, especially one of my sons who is a fitness freak. all he every says to me is "get out and do more excersise" and hes always telling me that his elderly neighbour (98) has more 'go' than me, and at 70 I'm not that old. I've just read it to my husband, just hope it sinks in.


  2. Fabulous, I am making many copies of this and the first one is going to my GP 2nd to Endo 3rd to my husband. THANK YOU FOR THIS.

  3. This is the first thing I've read that so accurately describes the illness and how I feel.

  4. If only the GP's would read this instead of just prescribe more meds! and promptly rush you out and the next patient in.

  5. I love it! Thanks. Here is another symptom I am wondering about. Muscle spasm that causes me to not be able to hold to the steering wheel? It happens in the cold car?

  6. This made me cry.....So many times I want to scream at people because I am frustrated from all the snide remarks,the looks,,and doctors lecturing me as I have tried all the diets and failed...... I am going to show this to my inlaws,and maybe it will sink in I am not just lazy,a hypochondriac,or making excuses....... :(

  7. I wish I had read this a long time ago. It truly explains every symptom I have. And I cannot tell you the number of times my husband told me to go outside and walk, how great I'd feel about myself if I got a job. Yeah right! I take care of three kids all day, my youngest being four. I feel like a failure because some days I can barely move off the.couch much less get a job. I showed this to my husband last night, let's hope a little sunk in :(

  8. This so made me cry....this is me!

  9. Thanks for this post. Was recently diagnosed with Hashimoto's. Its hard for people to understand how you feel. The weight struggle's, tired, the up's and downs. Hopefully will start feeling better soon.

  10. I just cried. This is the last year of my life.

  11. I have always said that the worst part of any condition like this, is the fact that it is "invisible". For those trying to explain their frustration, the above peice makes a PERFECT bookend to "The Spoon Theory". The spoon theory is actually written by a Lupus patient, but explains so MANY conditions. Now when people ask, I present them with "I Am Hashimoto's" AND "The Spoon Theory".

  12. After 13 years of trying to explain that I am ill, NOT lazy I am so grateful for this. I intend to show it to the Dr from ATOS since they don't seem to recognise 'invisible' illnesses.

  13. Thank you so much for posting this. I couldn't believe as I was reading it , I was thinking this is my life . I have just recently have been diagnosed with Hoshimoto's . I have other heath conditions , which have been blamed over the years for many of my symptoms which I thought to be true at the time . But the last few years I have been on a down hill spiral and felt so out of control over my own life , and it has been driving me crazy . They would check my blood and I have had every test done known to man over the years.which lead me to one of my problems NCS .After having what I thought was the biggest issue fixed ( Endometriosis / Hysterectomy ).I started having other issues and it just kept getting more severe since my surgery I thought it was because of the surgery , but they left my ovaries , so I was confused , sad and so many other emotions that I didn't like and I didn't like who I was becoming , I didn't recognize myself in the mirror anymore and I feel so crappy all the time and have horrible headaches, body aches and so tired , can't focus most of the time and so many other symptoms , that I just couldn't explain,so two years ago ( a year after my surgery) I went to my family Doc and tried to explain what I was feeling and going through and the first thing he ask was are you sleeping I said no not really and he told me to try melatonin and take time out for myself each day and eat better and exercise, so I did as I much as I could and I thought I just have to try harder and push myself more , and at first I thought okay I feel a little better.Then a series of stressful events happened in my life and I started taking on way to much, I tried to push past it and then I felt like I hit a brick wall going 100 mph and my body started telling me NO and things just kept getting worse from there. Then in September of this past year, my husband and I were at a wedding with family ( on a good day) and the silly chicken dance came on while we were on the dance floor and he spun me around ,we were laughing and we were just being goofing and having some fun and within 20 minutes I notice I have this huge cluster of bright purple bruises on my arm. I have always bruised easy all of my life, but the past couple of years , I have had them pop up all over and couldn't explain why or how I got them and just blamed it on my clumsiness ,which I have always been as well. After the bruises that day my family encouraged me to go get some blood work done , which allowed me to add my symptoms and the lump in my neck that kept getting bigger and my family doc sent me for some testing which , lead me to the right doc to help me figure out what has been going on , so this doc did a biopsy and blood work which lead to high antibodies and then the thyroid and then to Hoshimoto's. Finally I had a name to go along with this nasty thing I had been dealing with for so long .But he is a surgeon who cant treat this , he can watch and remove it, if need be..So now back with my family doc who has said untill my tsh levels go up more ( This time it was 3.9 , which it has been bouncing around for years unnoticed ) he cant treat this......so now I just wait and watch and learn and change my diet and vitamins and do what I can ..........Right?

  14. I loved the letter and thought it explained how I felt perfectly! It is hard for people to understand how we feel, when they are not plagued by the problem. It is nice to be able to have them read this and hope it helps them to get an understanding of how we feel and be more compassionate instead of telling us to suck it up. Thank you!!!

  15. I truly can relate with this story. I have been going through this since the age of 23 years old. I am now 43 years old and have taken many different thyroid pills. I can write a book talking about what I have dealt with in those years. Told that I couldnt have kids, started Menopause and went through depressions, anxiety and so many different things that I had to deal with including, weight loss, weight gain. I feel to this day that nobody understands what I deal with on a daily basis and I don't bother talking about it to anyone. unless you have my disease, you will not understand. My mother will ask me if I did any more exercise cause I have gained some weight but when I do exercise, It's a struggle to even get myself to get the energy to get up and do it. Yes, I do force myself but it doesn't make me feel any more energized. This is just not fare. I wish that people could truly understand my situation and feel how my brain and body feels.

  16. I love this. Thank you. I hate how many times I share things like this, people still don't get it. The people I think are closest to me. It's awful.

  17. Wow, this is the perfect description! I was diagnosed with Hashimotos at 16. I had already endured several years of people (whom I considered friends) telling me that I should eat less. I was singled out by P.E. instructors because my body didn't look or act like the other girls in my class. I fell asleep during band practice. It was a miserable experience. I wish those people could read this and see what was really going on. My family has been my support, but even they don't fully understand. Thank you for posting this.