An incredible true story of strength, honesty, and heartbreak that will hopefully bring awareness to an underfunded and ignored disease, Myalgic Encephalomyelitis (M.E.)
I’ve been sick for a lot of my life. I suffer from lots of different ailments that overlap each other like chronic headaches and migraines, fibromyalgia, poly cystic ovarian syndrome (PCOS), depression, and anxiety—just to name a few. Things got worse my senior year of high school, but really ramped up about six years ago. I was forced to be unemployed since 2016, but was approved for disability last year. I deal with constant widespread pain, cognitive issues, and problems with my mental health. I look like a regular 29-year-old woman on the outside, while I’m a complete mess on the inside. The horrors of having an invisible illness.
One thing that I also struggle with is chronic fatigue syndrome, more scientifically known as Myalgic Encephalomyelitis. CFS can also fall under the fibromyalgia umbrella and is basically extreme exhaustion lasting longer than six months. I could sleep a steady schedule of eight hours a night, every night, and I will still be absolutely wiped. It also causes me to have extreme insomnia, where I’m past the point of tired that I can’t fall sleep. It’s not just a feeling of being sleepy, it messes with your inflammatory system, neurological system, and your immune system. So why am I telling you this?
I came across A Girl in One Room on Netgalley, not knowing it was actually a continuation from Jessica Taylor-Bearman debut, A Girl Behind Dark Glasses. I’m always looking for more memoirs having to do with chronic illness similar to mine, and the fact that her illness started at 14, I knew I had to go back and read her first book. Across two days, I finished both books back-to-back and Jessica’s story was all I could think about. It all hit so close to home—we’re the same age, dealing with illnesses in the same realm. Though my chronic pain is nowhere near as severe as the what she goes through, I felt such a kinship with her in how she felt on the inside.
After getting sick with an infection, Jessica could not seem to get any better—no energy, falling asleep in class, and body in constant pain. Next thing she knows, she is spending the next four years in the hospital. Her limbs have completely seized, she can’t talk, move, open her eyes, or even eat—tubes are keeping her alive. Jessica is stuck inside a body that is failing her, screaming her way out. After developing a way to communicate with her family, she is able to document her thoughts into a journal she calls ‘Bug’—a raw, first-person account of someone with such an extreme case as doctors try to understand and learn more about M.E. She doesn’t hold back when recounting her frustrations with doctors, their treatment plans, or even her anger to her own body.
I swear, Jessica must have been a cat in another life because this girl has at least nine lives. Everything that could go wrong, does go wrong. From healthcare workers not believing her and her symptoms, to doctors supposedly well-versed not understanding the complexities of M.E. Her optimism and fight are astounding, She takes every hurdle in stride. Just when she would hit a major milestone, like sitting on the side of her bed, she’d faint and be out of commission for a day or two—two steps forward, one step back. Any little thing can send her back to the hospital for a few days or even a few months.
While her first book talked about the struggle of coming to terms with her illness and how severe it was especially in the beginning, A Girl in One Room talks about her desire to be a regular young woman. A friend convinces her to sign up for online dating where she meets Samuel. The two quickly fall in love and he becomes a support system separate from her incredible family that has been by her side from the beginning.
Jessica’s authentic voice really shines through her writing. I felt like I was reading about, talking to, a friend. I really hope she continues to write and bring awareness to M.E.
Thank you to the publishers for providing me with an advanced copy via Netgalley