I am now over a month post surgery and I've had a lot of thoughts brewing about the people you meet in life and living with Graves Disease. Not one to shy away from sharing my experiences; I'd like to introduce you to...
Daily Thoughts of a Graves Disease Patient
On strangers:
Before surgery, the absolute worst comments I got about my eyes were people asking;
"why are they so big?"
The best comments I got were also;
"I wish my eyes were big like yours!"
(Talk about 'Beauty is in the eye of the beholder!)
I could handle people commenting about the appearance of them because I did my damndest to use makeup trickery to conceal their true identity. What I'm having trouble with post eye decompression surgery is the abundance of rude strangers who feel the need to point out to me that it looks like I'm staring, surprised, or when they widen their eyes to mimic how I look from the eyelid retraction.
(You don't get to see pictures but you can catch a view of it in my CTV story)
While they now look visually smaller post-surgery, daily squinting doesn't make them look 'normal' for the most part. I've been told that I looked better pre-surgery by my family doctor and had both of my 'girls nights out' since surgery ruined by strangers comments. I hate to admit it, but I will most likely be staying home until after my next surgery to correct it unless absolutely necessary.
I would love to trade lives with the ignorant for even a day to see what I go through. I have recently turned down a job working in a public area because my mind has been trained to think that my eyes are so noticeably off putting that I shouldn't be scaring people with them.
I feel like I need to walk around with a button that says;
While my ego's bruised and tears have been shed, I have also learned something from this...
That I need to fight harder to bring awareness to Graves Disease and it's symptoms.
I will not rest until the public is educated on the physical manifestations this illness causes so no other patients will ever have to feel as hurt as I am by strangers comments. Just as Down Syndrome and Cancer patients generally resemble similar... Graves Disease patients also have our own unique looks too...not by choice, but just like our surgical scars; we wear it as a badge of honor for being one hell of a fighter against our illnesses.
On the flip side, I also want to thank the handful of strangers who have recently approached me in public wanting to talk about the news story they saw about me on CTV.
(Especially the cute asian cashier at London Drugs who barely knew english but wanted to know more about me; you made my day!)
"The happiest people have lived the hardest lives"
On Sympathy:
I've been a lucky girl having such wonderful people in my life. I've received beautiful emails and gifts from many people since being diagnosed with Graves Disease in 2010. Although appreciative I don't feel like I deserved them.
As you read this, think about your day to day life; the majority of you work regular jobs, enjoy time with friends etc. and this is your 'normal'. While it used to be mine my days in the last 2 years have been replaced with regular blood work, specialist appointments and surgery. While foreign to most, my mind now finds comfort in calling it my 'new normal'.
I've been asked to do stories for the media to speak about my journey a few times already. During correspondence with the reporters I always stress the importance of not putting a "poor her" spin on the story after one bad experience with a published piece. I admittedly get mixed feelings when people tell me that reading my blog makes them appreciate their own lives more. I'm trying to figure out when I became the girl who didnt 'have it all.'
On the Importance of Smiling:
If you asked someone who spends time with me regularly to describe what I'm like I hope that they would agree that I'm "always smiling". I can be thrown into a pit of eternal darkness and doom but can still find a positive in the situation. (Glow-sticks party anyone?)
While beyond grateful for the compliments of new found appreciation for a person own life I generally end up over analyzing the comment. There has never been a time where I have felt unappreciative of the life path that was given to me.
I'm going to have 5 surgeries? Some have ten or more.
I've had my blood taken hundreds of times? Some get blood transfusions regularly.
I spent a month straight in a hospital? Some spend years.
It is truly impossible to gauge the pain and suffering mentally or physically of one disease or illness to another because they are all so unique in their symptoms.
I hope when people tell me they will appreciate their own days more it is not because they are glad they haven't had to endure the pain and tears from surgery...it is because they read my words and see that attitude is everything.
If I could wish anything for the people who read this blog; it is that you are inspired to do what makes you happy, spend more time with loved ones, learn to expect the unexpected, make the best of a bad situation, and be kind to others.
Have a great summer & stay cool... wherever you may be reading from!
Cheers!
-Rayanne
