By Caitlin Seida
If you're like most of the public, you've probably never heard of Graves Disease. As Rayanne Forbes, 25, of Edmonton, Alberta, Canada puts it: "Graves Disease is an autoimmune disorder, it's basically a thyroid imbalance, heart condition and immune disorder all wrapped into one." Like so many health problems that affect us, each patient develops different symptoms. Some only have minor signs of the disease and are able to live their lives without much trouble. Others, like Rayanne, walk through hell and back.
"A person who has Graves Disease develops a misdirected immune system that attacks all the healthy cells in your body instead of protecting them like a regular person and affects nearly every organ over time." She tells us. "It begins with a severely over active thyroid level and you stay extremely hyperthyroid for many months or even years if pills don't correct it. In my case; 19 pills a day could not control my elevated heart rate and they had to remove my thyroid. Graves disease plus the abundance of pills that I took destroyed all my red and white blood cells and I nearly died when I caught a simple cold I couldn't fight off." Rayanne ended up in a hospital for almost a month before she could go home.
Rayanne found out she had Graves Disease at 22 years old, when she was busy working at a doctor's office, spending her day taking care of other people. Out of the blue, her heart rate elevated to 220 beats per minute and she developed extreme hot flashes. Availing herself of her work facilities, she visited a doctor and was diagnosed the very next day. But Graves is sneaky, Rayanne tells us. "Some people go months without a diagnosis because Graves Disease mimics the symptoms of so many other illnesses."
In Rayanne's case, the symptoms were very severe. "I was very shaky, and weak throughout the day. My hair fell out in clumps, I couldn't sleep for days then then want to spend 16 hours in bed the next. I was constantly out of breath and had to stop half way up the stairs just to make it. At first, they tried to melt my thyroid away with radioactive iodine, which is like drinking pure acid and burns the whole way down. Shortly after they removed my thyroid, my eyes started to very painfully bulge out from my body attacking the healthy cells behind my eyes, causing inflammation. The eye symptoms have an active cycle of 16 months so you are left to wait to see how bad they get, and then you are offered surgery to fix them afterwards. They also tried an in-hospital 5 day IV steroid treatment to help with the swelling behind my eyes. In that time, I developed gallstones, also a common Graves complication,although never proven to be officially linked because they don't know a lot about Graves Disease yet."
"I went on to get my gallbladder removed two months later. Next, they finally fixed my eyes and did a tricky and dangerous orbital decompression surgery. It's a highly invasive surgery that goes behind your eyes to remove fat and tissues that are pushing your eyes forward. If left untreated, some people go blind. The surgery fixed one problem but created another and gave me eyelid retraction - basically, I look surprised all the time. The eye surgeon tried to fix it with another surgery a few months after I was fully healed but had to cancel it halfway through because I wouldn't freeze properly and could feel the blood cauterizer burning through my skin, the scalpel, sewing through my eyelids and the 6 needles in each eye. It was absolutely terrifying."
Like so many illnesses that affect your appearance, Rayanne has been on the recieving end of some very cruel comments. "It started when my eyes started bulging out, leaving me bug-eyed looking. Perfect strangers would tell me to 'stop staring at them', ask me 'why I look so surprised' and use their fingers to widen their eyes to mimic the way I looked and I even got asked what drugs I was on to look that way."
One moment, in particular, sticks out in her mind. "I was out one evening and I told a girl I thought her hair was pretty. Her response was 'you can stop staring at me you $%&#@&% freak'. After they gave me my first surgery, and my eye lids were left looking wonky.. the comments got worse. Everywhere I went, people stared, and made mean comments they probably thought only their friend could hear. My eyes were suddenly "F--ked up", I looked like a freak show, the list goes on. I even caught a former co-worker telling another one that I had 'bug eye disease.'"
The harassment took a toll on Rayanne's self esteem. "I think when people imitated how I looked, it hurt the worse because there was nothing I could do about it. I was honestly just thankful I wasn't blind but still struggled with public acceptance. I started hiding in my room a lot however. Every night, weekends included, I sat at home alone in my dark room and kept to my self for about a year. I missed birthdays, dinners out, and a lot of really fun things because I was so scared of what people said about me." She wears contacts to make her eyes look more average, but they're highly uncomfortable. To me, it's hard to understand why Rayanne gets made fun of. She's a very beautiful woman with very striking features.
In fact, I asked Rayanne about her makeup routine and was told she gets requests from all over the world for makeup tutorials on a regular basis. She plans to create a video soon. Aside from her contact lenses, she wears false eyelashes every day. As you all know, I Feel Delicious isn't just about looking fantastic, though. It's about feeling fantastic. Despite looking amazing, Graves Disease has taken a toll on Rayanne's health. "Sadly, there is no 'keeping healthy' or a 'normal' anymore. I deal with constant chest pain, I'm weak, tired, shaky and still attend numerous hospital and specialist appointments each month. My heart rate still skyrockets (it shouldn't with the thyroid removal) but it does so I see a cardiologist. Since diagnoses, I have had to get blood taken around 300+ times."
Rayanne's next words hit me, like it will hit many others: "Dealing with an invisible illness is tough because I don't want to look like the 'sick girl' and I hide it well but that means everyone around you assumes your fine. I have been called a 'faker', an exaggerator and even told that i "deserved this" from an ex-friend more times that i can count. I'm blessed to now work at a place that understand my illness but I still feel guilty letting them know that I need to go home early to rest and I have a hard time asking for help. It's scary because you want to plan your life and a future and you cant because this illness controls you." Whether it's depression, polycystic ovarian syndrome, diabetes or anything else, it's hard for people to understand unless they've "been there," a fate you really wouldn't wish on most people.
Is it possible you could be at risk? Rayanne tells us that "Graves Disease is 9:1 females in their twenties. If you suspect you have it, its best to get to a doctor as soon as possible because the longer you wait, the worse it gets. A simple blood test will show if you have Graves and they can treat appropriately. Less than 1% of the world will be diagnosed with Graves Disease, and even less than that will ever develop the eye symptoms associated with the disease."
Even with less than 1% of the world getting a diagnosis, it's important to spread awareness, which is exactly why I interviewed Rayanne. "People don't go up to someone with an evident cancer diagnosis and 'ask why they're bald' because they know the implications of the illness," she tells us. It's true, too. So why is it acceptable to ask someone with an "invisible illness" as Rayanne puts it, why they're "so fat" or "so skinny" or "have bug eyes"?
"It has since become my mission to raise awareness so that no one else has to deal with what I have. All I ask of people is to realize that everyone has a story, and to be accepting of those of us who may look a little different. Every scar tells a story and we are more than happy to share it with you if you just ask nicely. We'd rather share what happened with you than have you judge us and make fun of us behind our backs." A message a heartily concur with.
"I never set out to be the 'Graves Disease girl'," says Rayanne, "but its a title I fully embrace because I know my blog and media appearances have brought awareness to this mystery illness. Some of the photos are shocking, most unflattering, but I keep them up because I have a hope that it's helping someone out there. I have since founded The Graves Disease Foundation of Edmonton and it will launch officially in early 2014. My foundation will raise awareness and money for those in my town battling the disease to help cover the costs associated with the illness...I was born to help others and it just took one hell of a medical journey to discover that. I always knew I had two choices, to get bitter or get better and I will fight every day to beat this disease with a smile on my face."
True to the I Feel Delicious motto, Rayanne tells us: "I never once felt 'sorry' for myself and I never will. Even though people tell me all the time that they think I had a rough go at it, I never felt that way because I had a great family by my side and I kept a positive attitude every day because I was just thankful to even be alive. I am a big believer to never,ever take a day for granted. "
When Rayanne told her story by starting her blog in late 2011, the response was overwhelming and overwhelmingly positive, despite some ridicule from former friends and acquaintances. "To date, I have received over 200+ e-mails from other sufferers world wide sharing their story with me and asking for advice. I cry almost every time I read their stories because you meet them at all different times throughout the diagnosis and you know it's going to get worse, but you don't want to tell them. Some even had worse symptoms than I did and shared their stories about being almost homeless, jobless, and 100% friendless because of how they looked. The emotional baggage they leave with me is so tough to handle sometimes but I feel so relieved that they feel comfortable enough to share it with me because they had likely not shared it with anyone else before."
"I want to show the world that its not about getting knocked down.. It's about getting back up and showing your strength. After all, life is exactly what you make of it." And Rayanne couldn't be more right. This fierce and fearsome chick is exemplifying this for all of us and showing the world just how strong she is, and educating us all one person at a time.
Caitlin Seida has been writing since 2006, with her work appearing on various websites including Livestrong.com, TypeF.com, Salon.com, Dogster.com and The Daily Puppy. A Jill-of-All-Trades, she splits her workday as a writer, humane society advocate and on-call vet tech. What little free time she has goes into pinup modeling, advocating for self-acceptance, knitting and trying to maintain her haunted house (really!). You can find her on Facebook, on Twitter, and of course here on I Feel Delicious!
