Terri Roark’s Journey with Myasthenia Gravis: Embracing Help and Community
Terri Roark’s MG journey may sound familiar to many with its sudden onset of unpredictability that changed her life forever. It began on a Sunday much like any other, filled with routine activities: attending church, enjoying time with friends, and relaxing at home. However, that afternoon, while watching TV, her vision suddenly became blurry.
Terri was no stranger to living with disease—she had been diagnosed with Fibromyalgia at 30, which had accustomed her to the need for extra rest throughout the day. Though these new symptoms were unfamiliar, she took time to rest her eyes, believing rest would help, but her vision issues persisted. She quickly confirmed an appointment with an optometrist but for many months her symptoms and a diagnosis remained out of focus.
Getting a diagnosis can take time. MG symptoms may lead medical experts down various diagnosis dead-end roads. When Terri’s MG was confirmed, eight months had passed and with all of the testing doctors discovered she also had Dandy Walker Malformation Variant.
“I actually think I was living with MG for some time before my diagnosis,” Terri reflects. This realization is common among those with rare diseases, where subtle symptoms can be mistaken for minor issues until they become unignorable.
With the diagnosis, Terri felt a sense of relief knowing treatment was available. However, she did not anticipate the MG crisis that landed her in the hospital. “I have extreme reactions to medications, so even while going down the path of finding the right combination of therapy, the medications were a shock to my system. I was simply overwhelmed by this diagnosis on top of my other conditions,” she shares. In the ER, IVIG treatment significantly improved her vision, but a subsequent crisis a few months later proved more challenging.
Terri’s second crisis was more intense and particularly traumatic, leaving her feeling vulnerable and scared. “I expected to feel better right away, and it terrified me to not feel well for months,” she recalls. Yet, amid the fear, Terri found solace in her support network. Friends took her on a rejuvenating vacation, and their ongoing support has been invaluable. “I have a good support network where I live—friends who look out for me and point out when I need help. These are people who know me so well and truly see me.”
Terri also has a strong community at her church, where friends offer rides, lunch outings, and companionship. Accepting help was humbling for Terri, especially after her diagnosis, when friends gifted her a larger TV to accommodate her vision issues. “It’s hard to accept generosity, but it makes a world of difference,” she admits.
Terri’s advice to others is to be proactive and informed. “Read up on your conditions. Understanding what’s happening in your body makes you a better self-advocate. Don’t wait to be told—seek knowledge.”
