Advocating for Yourself

Learning quickly how to advocate for myself was something I learned early on with my liver health. Please note that I am not a doctor, and the information I share is based on my own personal experience.

Back when I was first diagnosed with end-stage liver disease, I had an experience that was not good. It was my then family physician, let me share that I am not a negative person by nature. I tend to be very easy-going and accepting. What I am about to share is to teach you that this behavior from a medical professional is NOT to be tolerated.

The appointment that fueled my fire

The story begins when I had a scheduled appointment to review lab work, which I had done the week prior. I originally went to the doctor thinking I was overworking myself, running 3 companies, doing mom things, etc. So, I was hoping he would give me some sort of vitamin to help with the fatigue and brain fog-like symptoms.

That was far from what happened. Sitting in the exam room, he came in abruptly. I remember this to this day, because it seemed as though he was angry at something. His body language was off, and he never greeted me or said hello. He sat on his round stool facing the wall (opposite of my direction). The awkward silence began to make me feel really uncomfortable.

It was about only a minute later (felt like eternity), he spoke up and said, as he was handing me a pink piece of paper, "You have hepatitis C. I am referring you to an infectious disease doctor.” Then he literally walked out of the room. NOTHING else said.

I left feeling dismissed

I don't believe that at that moment I heard anything about what he said. Confused, I took this pink paper up to the front desk, thinking I had to hand it to the ladies at the front. Awkwardly, they took the paper, looked at it immediately, handed it back, and with what felt like disgust in their voices said, "This is yours." I stood there waiting to see if I was to reschedule for another appointment, and these two women glared back at me and said, "Nothing more, you can leave."

Walking to my car, I got in and then read the pink piece of paper. It was a referral to an infectious disease doctor with the words in bold print, HEPATITIS C. I sat and cried. I could not believe this was the first time in all my years of going regularly with my mom to her doctor appointments for her kidney that I had experienced such rejection, dismay, disgust, or stigmatization over a health condition.

My self-advocating journey

It was then that I got angry. Thinking to myself, how rude he and his staff were. It took me a good month before I reached out to the recommended doctor. I feared this rejection and labeling would now become a part of my health story.

It took me 3 doctors until I found the one with whom I connected and felt accepted. This doctor was a hepatologist at the University of Colorado Hospital. From the moment I arrived at that clinic, I was welcomed, and the atmosphere was warm and inviting. This doctor took the time to explain my situation clearly and without judgment. He took time to answer all my questions and was actually the one who cured me of hepatitis C.

This experience with this type of "care" prompted me to start a foundation to help those fighting liver disease. I wanted to help them get much-needed information about the liver and help guide patients on what to expect during an office visit, etc.

A full circle moment

5 years after I was cured of my hepatitis C, I went back to the doctor's office that originally gave me this silly pink slip. I walked in with my head high, and I handed the front desk a dozen flyers on hepatitis C and NASH (fatty liver) brochures. These flyers had my face on them, and inside, it was filled with information about the liver, about hepatitis C, fatty liver disease, and liver cancer.

I also handed them (the same ladies up front who were working there the first time) a hepatic encephalopathy brochure. They gazed at it, and I looked at them in their faces. I spoke with confidence in my voice, "I am giving your office and the doctor this information so you will be able to fully equip your future patients who are diagnosed with these conditions, with proper education about these conditions. After I left your office that day 7 years ago, I told myself that one day I would return to meet you again face to face and share with you that I am cured of my hepatitis C. I do not want another patient to receive the disregard that your office gave to me upon sharing only a pink slip with me”.

Stunned and speechless, those women took my brochures, and the last thing I said was, "Please let doctor so and so know I am alive and well.”

You are your best advocate

This experience, I am sure, is more than I ever pray anyone has to go through. However, I am here to share that if you ever feel uneasy or unheard by any doctor, you should consider finding a new team that will support your health in a positive way. You are a team with your medical provider. They are to be encouraging, informative, and supportive. Do not allow any office to dismiss your concerns, questions, or diagnosis.

I would also suggest that if you have a caregiver, ensure they are present during your visits to communicate any information you may have forgotten to mention, and also to write down instructions provided by your physician. To be your advocate if you are struggling with brain fog or serious fatigue.

Remember you are your BEST ADVOCATE. Hire and fire accordingly. Your health deserves the best from the whole team to ensure the best outcome.