Hands down the biggest comfort to anyone with AI is to know the crazy-weird stuff they’re experiencing… isn’t so crazy-weird. Or at least, other people on the planet are going through the same crazy-weirdness.

image via ‘Sweet pics dude’

The whys and how comes of AI remain, largely and bloody frustratingly, a mystery. But ask anyone with the condition and they will no doubt have a gut or emotional sense of what it’s all about. I have AI because I have lessons I need to learn. I have to slow down and enjoy life more. I yearn this and so my AI is here to ensure I get it. One day.

Someone sent me the below “letter from my disease”. As always, if you don’t have an AI or chronic illness, bear in mind that an AI is merely an extreme version of the dis-ease I think so many of us are feeling. When you have an AI, the reminders of the dis-ease are just louder.

If you’re new to this blog, you might like to catch up on some auto immune and hashimotos reading here.

The letter was originally posted on a UK thyroid support group forum and has circulated a little.  It struck me as uncanny how many AI phenomena it raises that I thought were just Me Things. Like:

* it rears its grim head on days when you’re looking forward to something

* it stems from a trauma. Yep, tick. Mine was a series of traumas that conflated.

* the Hashimoto’s roundabout ALWAYS involves seeing 23847239 doctors before you get something resembling traction.

* a TENS unit helps! This is similar to a SCENAR, which I thought I was the first to discover alleviates AI symptoms!

* you forget things. Last week I couldn’t recall my Mum’s name. Stumped. Head stalled.

* And so on…until the bit about the only thing that helps is sharing stuff with other Hashi kids.

Below, please do share your stuff if you have AI. I’m sure we’ll get it. And if you know someone with an AI, feel free to onpass this post.

Hi….My Name is Hashimoto’s, and I’m an Invisible Chronic Illness.
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 anyhow 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 also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else  feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn’t ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I’m here to stay!

I hear you’re going to see a doctor who can get rid of me. I’m rolling on the floor, laughing. 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 pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away, told to think positively, poked, prodded, and MOST OF ALL, not taken as seriously as you feel when you cry to the doctor how debilitating life is every day.

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 that I’m a debilitating disease. 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. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a “Normal” person, and can’t remember what you were going to say next!

In closing, (I was hoping that I kept this part a secret), but I guess you already found out…the ONLY place you will get any support and understanding in dealing with me is with Other People With Hashimoto’s

PS…I was also sent these little infographics from I Live Lightly, a chick in the Northern Territory. They also capture things in a way that makes me go, hey, it’s the same for most of us!

Perhaps you’d like to share the weird things your AI inflicts and see if you’re no Robinson Crusoe…?

Have your say, leave a comment.

  • Lisa

    Michelle, I know this is an old post. I have heard Michele Blondel is excellent. Dr Dzung Price and Ruth Sladek at Beyond Good Health Ashgrove are excellent too. I think you should get tested for Pyroluria. Michelle may be aware of this. Only do the test that is sent to SAFE Laboratories though. 1 in 10 people have it. Good luck! Lisa

  • Jamie

    I am in shock that I came across this blog. I’ve been searching for something like this for forever. When I was 12 I was diagnosed with an under active thyroid and doctors were shocked because of my age. Not long after that I was told I have Hashimotos. For the last 12 1/2 years I have had blood work done every 4-6 weeks and change my dosage of medicine almost every time. Talk about a roller coaster ride! I have talked to all 9 Specialists that I have been to about taking a natural approach and they basically all laughed. I am not sure if I can just stop taking my medicine but I am willing to try anything!

  • Bec007

    Thank you for this post!!! I was diagnosed with an underactive thyroid around seven years ago. In the past two years i have gone through hell, dizziness, tiredness, gaining weight, losing weight. Trying everything to try and get down to an ideal weight. Trying everything to get back to who i used to be, without the constant worry & anxiety!!!
    my doctors tell me that my underactive thyroid is “stable” with the medication i am on… and that it is all stress & anxiety, they have also diagnosed me with rebound hypoglycemia! anything to avoid the obvious issue…. ive never experienced these things before in my life, and really my job nor personal life are stressful, I am very blessed… finally i have found people who understand. How comforting this is… trying to decide to do the “i quit sugar” program… I think it is evident that i have to give it a go!
    Thanks Sarah for sharing your personal experiences with AI. You have brought hope to many people.

  • Kneesa

    I understand people trying to see the positive and saying they love their thyroid or whatever AI they have. But I’m going to be honest, I don’t love mine. I have Ankylosing Spondylitis and as a result the medicines used to treat it have given me leaky gut along with 11 food allergies..I don’t love mine. I am almost 30 and living at home with my parents, Perth housing is ridiculously expensive but even so, I’ve had to take a year off work to deal with this and I am in desperate need of my own space and right when I am confident that I can get back into work and sustain my energy levels and health, I’m dealt another blow. It’s not like this is the first time either, 3 years ago I took 18 months off to do the same.
    I know I can manage my condition but that doesn’t mean that I’m able to get over the limitations it imposes. Over the past 2 years I’ve lost a lot of friendships because people just don’t understand that sometimes you can’t attend events or on a Friday night when they want to go out, you dream of getting home, making a cup of tea and watching Greys Anatomy – because you know that’ll relax you more then 4 hours standing in hi heels, drinking and counting the seconds until you can get in your car and drive home.
    I learnt a lot of the ‘slow down, smell the roses’ lessons in my teens when I couldn’t keep up with other people and what appeared to be their endless energy levels.
    I only have simple goals, well one really. To buy my own home, I don’t care if it’s small but my own little haven where I can look after myself.

    AI derails me, and I don’t want to sound bitter. Perhaps I’m going through one of “those” days that we all have. But I still can’t bring myself to say I love my AI. I love myself, absolutely. But I do not love my AI.

    P.S Thankyou for all the work you’ve done and are doing to promote awareness for AI and standing up and introducing a new way of living with sugar-free methods. It is greatly appreciated 🙂

  • Claire

    Its so nice to read this and know I am not alone, all of those feelings are real and the symptoms are ‘symptoms’, not thought up symptoms!
    Sometimes its hard to decipher the difference between them. Am I just being lazy or is it that I have a real reason for feeling this way!
    Like they say, only another with a Thyroid disease will understand!
    So nice to have found a place I can pop in to get a reality check that its real & I’m not alone!
    Thanks Sarah for making such a GREAT & USEFUL blog!! xx