One Bad Apple
I would like to share an experience I had with a medical provider I had the misfortune of meeting. He was one of a handful of bad apples I have come across, however, I feel he impacted me emotionally more than any doctor ever has or could since then.
I was originally diagnosed in Washington state and had wonderful doctors. They were patient with me and worked hard to get me on the right medication combination.
I was nervous to change doctors
As narcoleptics, we are all different, and yet the same in many ways. Trying to get the correct medication, dosage, and the right schedule takes an average of 3 to 5 years, in my experience and others I have met. As you can imagine, I was extremely nervous to move and change doctors.
I arrived in Sacramento, California, and proceeded to find a new primary physician. I was new to Medicare and how it worked so I was careful to find someone off of their website and just picked the nearest doctor about 2 blocks away. I thought I had lucked out!
A disastrous encounter
My first and only appointment with him went south real fast. His office was very small and the only exam room he had was next to the lobby and everything we talked about could be heard by patients and employees.
When I explained what medications I needed and how I would like to continue to take them, he looked at me and literally said, “I am in a wheelchair and I manage to work, what is your excuse? I will not prescribe those medications because there is nothing wrong with you.”
Shocked, upset, and angry
I was FLOORED. I had been on the same medication for a few years and knew I needed them and had worked hard to figure out what was best. This doctor would not even reach out to my specialists to see I was not someone looking for stimulants and refusing to work.
Tears started flowing down my face and I felt like he was calling me a liar! How dare he! He had not even requested records and he made me out to be a fraud. I had a few choice words for him, and I walked out and filed a complaint with the medical board. Once I did some investigating, I found he had numerous complaints against him.
The challenge of an invisible illness
It was at this point I realized I would be faced with people who will not believe me no matter what testing or evidence I have. Narcolepsy is an invisible disease. Nobody can see what is going on in our head and they cannot see the struggles we experience! I now know that going to a specialist is the best way to manage my symptoms. It is such a rare condition that a primary physician cannot fully manage us.
We deserve validation and support
Since this fiasco, I have done a little more research before making appointments and have never met anyone else like him. His denial of my diagnosis made me feel horrible about myself. I look back and wonder why I felt so damaged when he said those things and realized my diagnosis was so new and I was in a fragile state and needed support from him. I thought he was going to make me feel better when I walked through his door and he did the opposite!
Do not ever allow a doctor to tell you that your symptoms are not real. If you do not feel listened to, then find a doctor that will listen to you and take you seriously.
Have you ever felt that your doctor isn't listening to you? Tell us more in the comments below.
Do any of your family and/or friends also have narcolepsy?