When I was 16, doctors told me I was sick.
Honestly, I felt relieved to receive a diagnosis. After years of poking and prodding, doctors diagnosed me with an autoimmune disorder called Sjögren’s. It took years to figure out because it’s most common for women in their 60s.
Today, I am 26 years old. And today – July 23, 2016 – is World Sjögren’s Day.
If you saw me, you probably wouldn’t know there’s anything wrong with me. I carry around a secret sickness.
So what does it mean to have Sjögren’s? It means a lot of different symptoms for different people. For me, my body aches like I’m 80 and sometimes I’m too tired to do normal activities. I lose circulation in my hands and my feet, and I catch most viruses that come my way. Since I was 16, I’ve taken a drug that’s used to treat malaria. They aren’t exactly sure why it works, but it’s the best option.
The hallmark of Sjögren’s is a lack of tears and saliva. I use special eye drops and have a whole routine with scrubbing my contacts. If you do know me, that’s probably what you notice the most.
I also take another medication three times a day that helps trigger my salivary glands. But after 10 years of taking this prescription, it still isn’t enough.
Most people don’t know that you need saliva to keep bacteria off your teeth and to keep a healthy smile.
Over the years, dentists have done their very best to fill cavities in almost all of my teeth. But the fillings fall out because you need saliva to keep them secure.
Asking for help is one of the hardest things in the world. This level of vulnerability ranks right up there with talking about pain. Brené Brown says it best:
“It’s seductive to think that not talking about our pain is the safest way to keep it from defining us, but ultimately the avoidance takes over our lives.”
I’ve known I’ve needed help for a while, but it’s a lot easier to ignore talking about my pain. I thought I could figure it out on my own, but the truth is, I can’t. I need help.
It will cost $50,000 for me to get a new smile.
And this number scares me to death. I’m 26 years old and I just don’t have $50,000 sitting around. The only thing I do have is an overwhelming amount of college debt, just like every other millennial.
We will pursue coverage by insurance, but it’s not looking promising. Everything I’ve heard so far from several professionals is that your teeth are not considered part of your body. Celebrities are paying out of pocket for flashy new smiles, so the work is seen as a cosmetic treatment despite the medical necessity.
This year, I met an amazing woman who became a great friend and also happens to be a pediatric dentist. She connected me with a specialist who she calls “an artist.” He is willing to restore my teeth with crowns.
When I went to visit him for a consultation, he said, “You probably won’t even know what to do with a new smile.”
And there’s the truth about the pain: I’m not sure what I would do with a new smile. But I would love the chance to try.
If you would like to pledge to join my support team to help fund my new smile, please leave a comment below with your email address and we will send you all the information when it’s time to donate.
Thank you from the bottom of my heart.
with a full heart,
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