Be Your Own Advocate

One thing I have learned from seeing multiple doctors over the years was to be my own advocate. At my age, it is really easy for doctors to discount what I tell them and just shove medication down my throat. On my first trip to the GI doctor, I was worried they wouldn’t believe me when I told them about my symptoms. I had never been to a GI doctor before and I felt like the youngest one in the waiting room. I did not belong and that only worsened my fears at the time. All I ever wanted was to feel heard and not looked at as an unknowledgeable child (which still happens to this day).

I cannot stress enough how important it is to find a good doctor who will listen to you, encourage you, and provide you with the best possible treatment while keeping in mind your financial situation. Medical bills get expensive and having insurance doesn’t always mean you get to pay nothing out-of-pocket. Don’t be embarrassed to leave a doctor if you do not feel entirely satisfied. As the patient, you are in control of the care you get.

I technically got stuck with my current GI doctor because he was the only doctor with an opening for a colonoscopy procedure at the time I got diagnosed. I was told he normally sees cancer patients and patients with severe disease, so I just assumed that he would do my colonoscopy and switch me to another doctor. But, he decided to keep me and I am so glad he did. He has always listened to me when I explain my symptoms, but more importantly he has always pushed me to be and do better. He saw more potential in me than I did in myself when I was diagnosed. I thought the world was ending and my life was over. He didn’t.

My regular GI doctor is not only my doctor, but I would consider him a friend/therapist/supporter on my team. I still prefer to have one or both of my parents accompany me to doctor appointments in case they have questions that I may miss. I have always felt more comfortable that way, but I do my best to speak up for myself instead of my parents doing it for me. By voicing my opinions and concerns, my doctor knows to speak directly to me and not just to my parents.

I was lucky enough to also see a GI specialist at University of Utah Health in January 2020. My appointment with him was almost two hours long!! He patiently sat with my parents and I and answered all of our questions without even flinching. It was the most fulfilling appointment I have ever had. I still see him twice a year to update him on my progress and he has made it known to me that I can contact him anytime I need to. This is the kind of doctor everyone needs and deserves!

Recently, I came across this database that allows you to look up a doctor’s name and see how much money they receive from pharmaceutical and medical device companies. Each time a doctor writes a prescription, they are getting some sort of payment from the pharmaceutical company. This is a great way to see if your doctors really are there to listen to you or just to dish out medications. The purpose of the database is to create a more accountable and transparent health care system. It is a really cool resource!

The two GI doctors I see are truly incredible. I got lucky. But doctors are not the only players in the game of chronic disease. You have to deal with insurance companies, medication, and pharmacies, some of which are not super nice. After my medication was denied multiple times, I had to stand up for myself and say that this was not okay. How can you deny a possible life-saving medication to someone who is seriously ill?! I have never fought for something so hard in my life. I know I am not the only one who has experienced this and there truly are many flaws in the health care system that need to be addressed and fixed.

Don’t forget to be your own advocate and speak up for yourself at your next doctor appointment! Remember that the care you get is up to you.