Being Your Own Best Advocate, Even When it's Hard.
If you've ever watched an episode of House, you probably think medical diagnoses happen over the course of a dramatic long weekend in which one doctor administers a series of tests and works as a detective until the mystery of your illness is solved.
I love House, but in my experience, their depiction of diagnosis is so far from real life it might as well be categorized in the "fantasy" genre. In real life, diagnosis of a serious illness sometimes takes years from the first sign of symptoms. Patients can spend hundreds of hours traveling to different specialists, and thousands of dollars paying for those different tests that they often have to push to get. Often, patients don't get a diagnosis until some dramatic crisis lands them in the hospital. There's no one doctor on your side, keeping active notes and staying up late into the night to ponder your symptoms. There's just you, and if you're lucky, a parent or spouse, driving around from appointment to appointment with a folder of papers, hoping this next doctor will be the one to give you an answer.
Don't get me wrong –– I'm not blaming doctors (#NotAllDoctors?). They're doing their best. But when you have to see one doctor for your GI symptoms and another for your pulmonary symptoms and another for your neurological symptoms and so on, it takes time and money, and sometimes rare diseases slip through the cracks. Our system is imperfect, and there's no quick and easy way for all of your specialists to get in a room and chat over margs and tapas about what could be causing your pain.
And in addition to the time and money, there's something else. Something that has always been the biggest factor for me when it comes to seeking medical help. Self-doubt. Patients are so often told "it's all in your head!" that it's hard, at some point, not to believe that yourself. It's hard to say "I know this pain is real," when there's a little voice that sounds like your doctor or your aunt or your co-worker in the back of your head saying it's all psychosomatic. You're just depressed, or you're just anxious, or you're just stressed from work. I'd just like to take a moment to say: I struggle with depression, I have anxiety, AND I have a diagnosed autoimmune disease. Struggling with mental health does not necessarily mean your physical symptoms aren't real.
So with all these road blocks, it becomes that much harder –– but that much more important –– to be your own best advocate. When I was younger, I trusted that my doctors always knew best. And while doctors know a hell of a lot, they aren't the ones living in your body. It's okay (and necessary!) to speak up, and ask questions, and want to know more about why they've come to a certain conclusion. It's something I'm still not always very good at (because I'm a people pleaser), but that I'm working on. Because especially as you get older, no one is going to be that advocate for you. You have to be one for yourself. You have to take notes, and keep track of your meds, and understand what tests you're getting and why.
When I first started exhibiting Crohn's symptoms, I didn't have the vocabulary for all of this. I was in high school, and even though I felt sick every single day and was losing weight quicker than Jake Gyllenhaal preparing for a role, I trusted the other people in my life when they said it wasn't anything to worry about. And you know what? If I could go back now, I'd tell my teenage self to speak up louder, and to not stop asking for help and answers until someone gave them to me.