how to heal autoimmune disease: remember you’re no Robinson Crusoe
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.
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!