Can Someone Really Predict Life Expectancy?

I was about 4 years old when my parents became concerned about my physical well-being. My younger brother was becoming stronger than me, and this alerted my parents that something could be wrong. Months of testing and doctor appointments eliminated lots of severe diagnoses. Still, it would be years from now before my parents and I heard the words spinal muscular atrophy.

The doctor said my life expectancy wasn't impacted

Over the course of those doctor appointments, my Dad would always ask if my life expectancy would be shortened. The answer was always no. That relief gave us as a family the freedom to focus on the other obstacles that came with my diagnosis.

Not everyone has heard that

How can anyone, including a doctor, really know the answer to that question?  Obviously being told that my life expectancy would not be affected benefited my mental health. Sadly, that wasn’t the case for a lot of people that I have met who have spinal muscular atrophy.

The SMA community is a relatively small group.  I have had the opportunity and pleasure to meet many other members of our community throughout my life. There are many of us who are middle aged and older. When speaking about our experiences I have often heard that they were told that their life would be shortened. That can be a heavy burden to live with.

Throughout my life I have tried to put myself in other people’s shoes. When I listen to my friends who were told from a young age that their life would be shortened because of their spinal muscular atrophy diagnosis, I get angry on their behalf. Dealing with this disease is hard enough but thinking about a shortened lifespan can be a mental health nightmare. The fact of the matter is no one really knows how long any of us are going to live.

Talk of prognosis impacts mental health

Through the years I have had more than my share of doctors. One in particular gave me the most important advice I have ever received from a doctor. His direct quote “Doctors are not gods, we all make mistakes.”  Those words have stuck with me throughout my life. It has helped me navigate through the difficult conversations I have had with doctors over the years.

What a doctor says has great impact

One doctor who stands out was from my late teens. She was a physiatrist. For those who have never heard of a physiatrist, I’ll save you the Google lookup. They are a medical doctor who has completed training in the specialty of physical medicine and rehabilitation. 

This doctor had some of the worst bedside manners that I have ever experienced. They basically told me to stop trying because I would end up in a wheelchair before I knew it. At this age I was still very much self sufficient. I had just started using a scooter while at college.

That doctor could have helped me with some positive thoughts. Instead they tried to rob me of my positive outlook on life. I didn’t let that happen. I have worked hard in my life to fight through the physical challenges that SMA has caused. It’s not always easy but we have to keep trying. So remember that doctors don’t always have all the answers.  Don’t let them negatively influence your mental health. I’m a big believer in positive thinking.  Don’t ever give up!