I Was Sick For Years Before Doctors Could Figure Out Why, And I Want To Know Who Else This Happened To
If you’ve been watching the news lately, then you know healthcare in America is hard to handle. And if you’ve been watching the general population’s reaction to recent events, then you’ve seen the harm trying to navigate the system can cause. And it’s unfortunate actually, almost devastating, but many of us have to learn the hard way.
People often go to the doctor when they’re sick: with a fever, cough, sore throat, tummy ache, the list goes on. But then there are those —like me— that go (and have continuously gone) to the doctor for perpetual pain and unfathomable symptoms that corporate America’s standard five-sick-days-per-year policy won’t cover. Then, after several doctor visits, you have a rude awakening and learn that all doctors are not the same. It’s a continual cycle that goes on, but over time it teaches you that whatever’s wrong with you is rare. And If you’re lucky, you’ll eventually find and gain access to a medical team that’s willing to take on the challenge. The journey to that point, however, is brutal. Trust me, I know.
On Friday, September 19, 2014 —yes, I remember the exact date— I went to my office (at the time) like any other day, but like anyone else on a Friday, I was over it by lunchtime. So, I grabbed lunch, sat at my desk to eat, hoping to count down the hours, but then, suddenly, something didn’t feel right. I was hot. I was nauseous. I was unable to move without projecting some substance from my body. And I was almost too weak to call for help.
I pushed through volatile sweat spells and relentless upchuck reflexes just to make it to the bathroom. Then, I passed out. Things were so bad that the president of my then-employer was on the bathroom floor with me, waiting for the ambulance to show up.
Once I made it to the hospital, the attending ER doctor told me I had the flu. That sounded impossible based on what I had just gone through, but I’m not a doctor, so I took my discharge papers and went home.
One month later, it all happened again, but this time I was at home. The ambulance was called, the doctors kept me for a few hours, but ultimately, sent me home. But then, it happened again! I was nearly 40 pounds lighter because I was barely eating, and I had unbearable stomach pain constantly. Enough was enough. I took time off work to meet with multiple doctors at multiple hospitals across the country, spent thousands of dollars in testing (even with insurance), and after several procedures, including two major surgeries, one hospital told me they thought they found the answer – but I needed to take a specific medicine to confirm their theory. Thankfully, the medicine worked, which meant I finally had an answer and a diagnosis, but that was all truly just the beginning. Why? Because my diagnosis is so rare that only six doctors in the city of New York were trained and equipped to take me on as a patient (that number may or may not still stand).
For those curious, my condition is called Sphincter of Oddi Dysfunction, and only 1.5% of the world’s general population have it.
I’ve been living with my symptoms for just over 10 years, and I’ve undergone 15 procedures, including three painstaking surgeries – one of which kept me in the hospital for two weeks. And now, I’m currently preparing for procedure number 16.
There are approximately 30 million people with rare disorders worldwide, and I think we can all agree this shit is rough. So, I want to hear from you! It took me a long time to realize I wasn’t alone, and you’re not either. Share your journey to being diagnosed with a rare disorder and learning how to manage your day-to-day life in the comments or anonymously on this Google form here. Your comment may appear in a future BuzzFeed article!
