I am Gwen Petersen
living with ALS
I was listening to my body, but no one was listening to me.
You know you are getting old when…
You age out of a <35 group. And a group that so many others simply don’t know exists: that is, people under 35 living with ALS. How many of you have heard, “But you’re too young to have ALS?” And that’s how my own diagnostic journey began—with a strong sense of doubt and unreality hanging over my experiences.
I was diagnosed with ALS at 32 years old, but the prior 1.5 years of misdiagnosis has been the hardest part of the ride. I spent that time bouncing between doctors’ appointments and consistently not being heard. I was listening to my body, but no one was listening to me. It was easier for doctors to call my experiences “anxiety” and prescribe medications. They weren’t recognizing and acknowledging the truth of how my early symptoms were manifesting. I was frustrated, to say the least.
At one point during this period, my psychiatrist let me know that he was preparing to leave his practice. He referred me to a colleague he thought “would be a good fit,” but he also cautioned me that this colleague might not be accepting new patients. I was thinking, “Am I going back to square one?” Fortunately, the referred doctor did accept me as a new patient and so I came under her care.
Our first meeting started out with a bang (pun intended) … with me being wheeled into her office. I had just fallen while getting in the elevator. With my compromised balance, when something shakes, it’s game over. Teary-eyed and completely embarrassed, I explained that falls like this were becoming second nature, in fact, I was experiencing so many of them that I’d begun keeping a log. My new doctor said, “Let’s go into the hallway. I’d like to watch you walk.” She followed close behind me, at one point taking my arm, as I demonstrated my shaky stride.
I sat down in one of her armchairs. She looked me in the eye, and the first thing she said was, “You don’t fall from anxiety.” Right then, I knew I was in the right place. Later in our conversation, she said she was going to refer me to a neurologist, and this put me on the path, finally, to getting real answers.
What I learned from this experience is that you have to persistently advocate for the truth of what your body is telling you, and keep telling that story. If the answers you get don’t seem right, they’re probably not right. It took 1.5 years for my condition to be accurately diagnosed, and if I had not persevered, I might still have been one of the undiagnosed “You’re too young to have ALS” cohort. As it is, I am living with ALS, it is real, and I am 35 years old and fighting strong.
And what does that fight look like now? I still have to advocate as hard as I can—both to try and get the critical therapies that I need, but also to advocate on behalf of the larger ALS community. Building awareness and understanding of ALS has become a passion of mine and I volunteer in many ways so young(ish) people like myself won’t have to explain that, yes, young people can get ALS too.