Frank, Funny & Poignant Memoir of Living with Chronic Disease

The Diagnosis Diaries by Susan Kelley

“I always thought I was a survivor — actually more of a thriver. Life has thrown me a few curveballs, but I always rebounded and turned it around; lemons to lemonade — or often, Limoncello.”

This was the attitude of Susan Kelley — an active and healthy 75-year-old former model, successful author and veteran of the talk show circuit — before her life took a drastic turn. What began with a nasty fall and head bump off a train in Italy led to a series of bad falls and degenerating leg strength, culminating in a years-long search for answers. After two years, she found her answer: Inclusion Body Myositis (IBM), a chronic autoimmune disease with no treatment or cure.

Suffice it to say, the prospect of eventually being wheelchair-bound was life-changing for someone who loved to walk the beach or the city streets of Florence, Italy. Kelley had to adapt to a new way of life, an all-too-familiar situation for many people living with chronic disease. In hopes of reaching and inspiring people facing similar diagnoses — and to manage her own feelings — Kelley began documenting her experience. The result is The Diagnosis Diaries, a courageous, honest and witty account of the challenges she faced and the lessons she learned.

Maintaining Hope and Postitivity in the Face of Diagnosis

Being forced to rely on her husband to tackle a single step or get up from the toilet made Kelley feel like an albatross — hardly able to stand on her own two feet without stumbling. But this once hyper and independent woman would not go down without a fight. Her determination is inspiring, balancing the unknown and frightening with a positive and hopeful message.

Kelley sought the help of dozens of doctors and specialists across the country, including a “quack” Pilates guru who “smelled old, unbathed and seedy.” She endured rounds of ineffective physical therapy, inhaled exorbitant amounts of vitamins and supplements, and even tried a (short-lived) keto diet. She never found the miracle cure she desperately sought.

But she learned to manage her symptoms by building a solid treatment team, including an acupuncturist, physical therapist, Pilates instructor, and her husband as “head coach.” Her husband of over 30 years was the most positive person she knew — even after the horrible accident that left a third of his body covered in 3rd-degree burns.

Even with the care and support of loved ones, Kelley’s anxiety grew as her hopes for a miracle cure dwindled. But she still refused to give up.

“You must grieve the loss of who you were before you can accept the reality of who you have become.”

She learned the importance of setting boundaries and maintaining only healthy relationships in her life. She started seeing a therapist who helped with her growing anxiety — including healing from the stressful relationship with her late mother. She started using creative visualization and other self-help tactics to keep her mind focused and her spirits high.

Even the coronavirus isolation provided an unexpected gift — time to reflect and understand herself, her illness and where she’s going.

Adapting to the “New You”

A lot of personal research is incorporated into the book, including self-help books and expert opinions on IBM, revealing the hours of hard work and dedication Kelley put into treating herself and finding her own answers. She adds extra layers of depth and humor by incorporating many nods to pop culture, quoting iconic figures from Thomas Edison and Aristotle to Betty White and the Joker.

All in all, The Diagnosis Diaries contains an abundance of valuable lessons for readers to take with them. One particular tidbit I’ll be taking away is this: “Never put off till retirement what you can do today — or you may never get to it.” Kelley reflects on how she was fortunate enough to travel throughout her life, especially since that doesn’t seem possible anymore.

Though the book discusses such a serious topic, Kelley handles it in a frank, honest and lighthearted manner. While readers sense her frustration — and at times, complete despair — it’s obvious Kelley doesn’t let her diagnosis weigh her down as she maintains a humorous outlook on life.

I recommend this book to anyone facing a life-changing diagnosis because Susan Kelley demonstrates how to handle it with levity, positivity, grace and determination. While Kelley continues to mourn the loss of high heels, she not only adapted to her new life but learned gratitude as well. There’s surely a bright horizon in her future — even if it’s not the future she was expecting.