In January 2017, Ashley Brooks began noticing her eyelids were droopy and she was unusually tired. A few months later, she had trouble swallowing and problems with her voice. At the time, Brooks was a junior at Georgia State University in Atlanta, studying to become a respiratory therapist. In February of that year, she had studied a disease called myasthenia gravis and thought many of her symptoms were similar. A visit to a neurologist and a blood test confirmed the diagnosis. The irony of studying one of the major symptoms of myasthenia gravis—trouble breathing—was not lost on Brooks. “I have this rare disease that I learned about in college three months before I was diagnosed,” she says.
Over the years, Brooks has undergone several treatments, including plasmapheresis (a procedure that removes, treats, and returns blood plasma to the body] and a thymectomy, [open-chest surgery to remove the thymus gland) and been hospitalized several times. She currently has infusions of rituximab (Rituxan) every four months and ravulizumab (Ultomiris) every eight weeks. A daily dose of azathioprine (Imuran) helps minimize symptoms and reduce flare-ups that have routinely sent her to the hospital. Even with treatment, Brooks has days when she feels weak and struggles to lift her arms and keep her head up at night. “I don't consider myself to be in remission because I still have daily symptoms, but I haven't been admitted to the hospital since 2019.”
After graduating from college, Brooks worked as a registered respiratory therapist until the COVID-19 pandemic. She was immunocompromised and needed assurances that her workplace was safe. When that didn't happen, she left the profession and started a web-based business, which provides more flexibility for doctors' appointments, infusion treatments, and the unpredictability of her symptoms.
Before her diagnosis, Brooks shared makeup reviews and natural hair tutorials on social media. In 2019, she began blogging about living with MG on her website, AshleysAnatomy.com. “I have an invisible disease, which is one of the reasons I started my blog. I want everyone to know that you can't tell if people are sick based on their appearance. I also wanted to represent a group (young, disabled Black women) that is usually overlooked.”
Since starting her blog, Brooks has connected with people around the world. “I have a pen pal in Romania who found my website after she was diagnosed. We're in touch all the time now to support each other because we understand what we're each going through despite living thousands of miles apart.” On her website, Brooks also sells soy wax candles and journals on chronic illness to help keep track of symptoms and medication side effects.
Brooks says her followers appreciate her unvarnished descriptions of daily life with a chronic illness. She's open about her symptoms (fatigue, muscle weakness, and double and blurry vision), treatments, and mental health and how she deals with them. “Managing the fatigue is hard because I want to do so much every day, but I know I have to pace myself and plan things out like when I go food shopping.”
Vocal fatigue due to muscle weakness is another problem. When Brooks talks for long periods or chews food her mouth and jaw muscles quickly weaken. “The repetitive movements of opening and closing my mouth to form words tire out my face muscles and I begin to slur. When I'm exhausted my voice will become softer, almost like a whisper, and it's hard for people to understand me.” Her hands get tired easily from typing and texting, so she frequently uses the talk-to-text feature on her smartphone.
Brooks hopes to show that people with chronic illness can lead fulfilling lives. She does that through her blog, writing for publications, and public speaking appearances. She believes that sharing her story increases awareness of a disease that affects 36,000 to 60,000 people in the United States. If more people understood MG, Brooks says, they might have more sympathy for those experiencing invisible symptoms such as fatigue and muscle weakness. In the days following her diagnosis, Brooks was fortunate to meet someone in her sorority who also had MG. “She became a mentor and even visited me in the hospital when I had surgery.”
Brooks had her own identity crisis after she quit being a respiratory therapist because of her diagnosis. “Who am I without this job?” she thought. In the intervening years, she has learned to accept her new self—where she is, who she is, and her limitations. Brooks recognizes that she may not be able to keep a steady job or be productive every day, but she no longer measures her worth by those standards. “I have reclaimed my identity, and I love the person I am today. Chronically ill and all.”
