Today marks World Thyroid Day. A day to acknowledge this hidden condition (or not so hidden if you, like me, have Thyroid Eye Disease (TED) or "starey eyed condition" as one doctor called it- thanks doc, that did wonders for my 11-year-old self's self confidence). A day to appreciate the work being done by charities in supporting others to manage their thyroid disease while educating others on the many strings of this autoimmune illness.
And a day to be kinder to myself. My journey with my thyroid hasn't been linear; I haven't always understood it or the importance of maintaining my health but I'm getting there. So on World Thyroid Day 2020 I thought I'd reflect and share some of my near 23 year history with this old thang.
I was diagnosed with Graves' Disease aged three (or Gravies as my younger sister once dubbed it) and with that came Thyroid Eye Disease. Graves' in childhood is actually fairly rare as it more commonly affects people between 30 and 50. Mum says I got really sick with it to the point I couldn't hold water down. I, of course, don't remember anything about the diagnosis or symptoms until that first day of primary school when this gobshite came bounding over and declared "your eyes are massive!" (They probably meant it in an innocent childlike way but still a gobshite). And things from there changed. It was like this confidence shield shattered and I realised I looked different to other kids.
I was bullied a fair bit in primary and it certainly got kicked up a gear at secondary school. Thankfully never anything physical (other than a boy lobbing rocks at me- we shared watermelon in playgroup together man, and this was how he repaid my friendship?) but words stick. One particular memory that makes me feel rather sad on reflection (and one that I can't imagine having gone through with) was when I went to the doctor with my mum to see if I could get surgery on my eyes to improve the bulging or "make them smaller". A procedure that involves making the eye socket bigger (I swear I remember the words "snapping the bone" used) and giving the eye room to sink back into a more normal position. Eyelid surgery might also have been needed. I was 11. Eleven years old and already desperately wanting to change the way I looked to fit in and stop the name calling. I was told I wouldn't be able to get the procedure until I was 18 as I was still growing etc- and thank goodness.
Anyway violins away, that's my pity party by with. Fast forward through my teens, I had loads of energy but would crash after school and have to have an afternoon nap without fail. Then I turned 18, went to uni, had a right good old time and stopped taking my medication. I didn't realise at the time how big a mistake that was as it caused my thyroid to flip the other way to hypothyroidism. I always remember relatives joking "it'll catch up with you one day!" And boy were they right, I turned into a porker having piled on a bit of beef by not eating right or exercising and ditching my meds.
Finally at the age of 22 (after looking down at my muscle-less thunder thighs on a bus in Australia and realising no one was going to do this for me) I decided it was time to try to lose some weight. And I did rather well through natural means of a good diet and exercising but I was still constantly battling fatigue, brain fog, loss of concentration, feeling low, emotions going everywhere due to my body now functioning at a slower speed than most. Finally at long last a year and 3 months ago I went to the doctor for help (you can read my experience here) to get back on my meds, which definitely made a difference.
So here we are; almost 26, still trying to find the right dosage for my body, still lots of unanswered questions; why did my thyroid flip? Should I eat a gluten free diet? Will I always be on medication?
This isn't supposed to be a woe-is-me post but help educate others on this somewhat silent disease.
If your snotty nosed child (kiddin) comments on someone's appearance, please call them out. You never know what's going with another person or what they're battling- health condition or otherwise. A lot of autoimmune diseases appear hidden but people soldier on despite them.
And if I could save just one 11-year-old from feeling they had to physically change their appearance to fit in, then my journey and experience hasn't been in vain.
Speak soon,
Wee Eb
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