A doctor and patient having a conversation

The Change I Did Not Expect

Last updated: September 2022

I did not see it coming in any way shape or form. I was truly blindsided by not just the event, but the fact that I probably should have anticipated it. My neurologist is leaving her post and I am feeling bereft. I think 'devastated' was the first word that came to mind, but I wanted to pull myself back some and not over-exaggerate. Yet, it is how I felt.

Blindsided with change

When I learned that she was leaving I think I stopped breathing for a moment. In fact, I know I did. It was the sound of my selfishness made silent. I was getting into my own MS groove. I was fortunate to have access to healthcare that allowed me to generate a good team of healthcare providers. These were people who were on my side as I advocated for myself. That delicate balance stopped existing before I knew it had happened. Changing providers is never fun. It is even less fun when it is not your choice.

A promising start with a new neurologist

My first inclination was to write that I had been spoiled by my former neurologist. I chose to see her only when her colleague decided it was more important to discuss gastric bypass than multiple sclerosis. It was at that point that I kicked him to the curb and never went back. In his replacement, I found a true champion. As someone who advocates strongly for herself, I was not sure how this new relationship would work. Over time, it became one of the most consequential relationships I have had inside and outside of medicine.

Characteristics of a good neurologist

Ana (not her real name) was always well-informed about my case. She never glanced over my file while we sat in awkward silence. She knew what we needed to go over before she set foot in the room. She remembered me and things about me. She never made decisions. I made decisions with her input and our shared discussion. I used to think I was spoiled.

I was not spoiled

The experience I had with Ana was a privileged one. At least that is what I have been told. I was listened to and respected. I was not sent for tests without knowing exactly what they were and why she thought they might provide important information. It was a relationship based on mutual trust and a belief that we were pulling in the same direction. I was considered to be spoiled. And therein lies the problem. I was not spoiled. I was simply treated the way that every person living with multiple sclerosis (PLwMS) should be treated.

Thinking about quality health care

While the definition of quality of life is different for every PLwMS, the definition of quality care should not be. We can all agree that being respected and listened to is a very basic ask. We are people, not our chronic illness and to treat the disease and not the person, is a disservice to us all. Beyond that, there are things like the humbleness to admit that the lived experience of the person living with MS is greater than their assumptions of what it is like to live our lives. I choose not to think of myself as spoiled, because if I do that then that means I believe other people living with MS do not deserve to have what I do. I do not and they do.

Starting again as usual

As I have written previously, I am a Pollyanna. I find myself looking for the best in situations where I have no choices available. Lemons. Lemonade. The old sayings kind of stuff. I know I will take this same attitude with me when I meet my new neurologist. It does me no good to hold a grudge. Who am I going to hold it against? I can only trust that I will advocate for myself in the same manner as before with the same positive results. After all, once you have been spoiled it is hard to go backward. Ana set a platinum standard to which all others will be held.

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