In 2018 at the age of 35, Marti Hines was diagnosed with multiple sclerosis (MS). MS is a chronic illness that occurs when the immune system attacks myelin, the protective coating that covers nerve fibers in the brain and spinal cord, causing inflammation and damage. This damage presents as lesions and causes symptoms throughout the body including muscle weakness and numbness, loss of motor control, vision changes, mood changes, tremors, fatigue, and more, depending on where the damage occurs.
Hines says her diagnosis came out of nowhere. Instead of feeling unwell for some time and eventually landing on a diagnosis, she felt completely healthy—until one morning, she didn’t. Unsurprisingly, she describes the diagnosis as traumatic.
In early 2020, Hines was also diagnosed with trigeminal neuralgia, which is an extremely intense pain in the trigeminal nerve on the side of the face. It’s a common side effect of MS, according to the National Institute of Neurological Disorders and Stroke. She had to have brain surgery in February 2020. After her recovery, the world was a very different place, with lockdowns in full force. She then was faced with navigating her chronic illness in a world that felt extremely unsafe for immunocompromised people. Staying safe added another layer of isolation and emotional distress.
Despite all of this, Hines does her best to maintain a positive attitude and give herself grace on the days that she can’t. But she didn’t get to this place overnight. We asked Hines to share where she’s found emotional support to help navigate this life-long condition. This is her story, as told to health reporter Amy Marturana Winderl.
What’s unique about my diagnosis story, at least from what I’ve read and heard, is that for a lot of folks that wind up having MS, it’s kind of a long road getting there. They’re not feeling well, they’re not being believed, they’re being gaslighted by doctors or family, they’re taking tons of tests. When they do finally get their diagnosis with MS, there is a small amount of relief there because they’re feeling validated. But for me, it really came out of nowhere.
I had never been in the hospital before, had never been sick, and did not have any symptoms. I was just on vacation with my family and one day, I woke up paralyzed on the left side of my body. It was very traumatic. At first, doctors thought I had a stroke, but cognitively, I was fine, so that didn’t make sense. I wound up getting medevaced to a hospital in Boston where I had an MRI. It revealed 19 lesions on my brain and three on my spinal cord and was conclusive for MS
It was very shocking. I went through a lot of denial. My brain just rejected this information, because in my mind, I was fine. It was definitely about six months before I even decided to get on treatment because that’s how angry and in denial I was over my diagnosis. But as I started to get sicker and symptoms started appearing, my neurologist finally said that I needed to get on treatment or I was no longer going to have her as my doctor. That’s really what got me to click over into this place where I began my journey towards acceptance.