Unfortunately, the answer to the question “What’s life really like with Lupus?” isn’t easy to answer. The disease is just so personal. No two Lupus cases are alike due to the wide spectrum of possible symptoms, conditions, and outcomes affecting many systems of the body. And, that makes it difficult to understand this incurable, unpredictable autoimmune disease itself, let alone its impact on everyone involved.
I began my Lupus Diary blog in 2012, just after my diagnosis. Mainly as a way to share how the disease affects me, just one of the millions of people diagnosed around the world, and those who will be diagnosed in the future (after years of wondering).
After all the research to learn about Lupus, I have still been deeply frustrated with the lack of answers and my inability to articulate how the disease was truly affecting me. Without that information:
- My doctors and practitioners who treat me for Lupus would never have the full picture of what it’s like to live with the disease.
- My family and friends who want to help would never really understand how.
- I, myself, would never be able to know and understand my own unique brand of Lupus.
Then One Day…
…I realized that instead of looking for medical literature and articles to explain how Lupus was affecting me, I had to recognize that it is my responsibility to document the specifics about how Lupus was affecting my body—the symptoms between doctor appointments, how I reacted to medications and foods; how Lupus was affecting my mind—the emotional effects of pain and uncertainty; and how Lupus was affecting my spirit—the connection to myself that goes beyond the body and mind.
I needed to gain a better awareness of the effect of Lupus on every dimension of my life.
A Different Way to Write About My Life with Lupus
So, in 2015, I decided to begin writing in a new format for my personal diary using a shorter body-mind-spirit format, like you see here.
It began as a way to help me quickly capture what I needed to say each day using prompts that helped guide my thoughts, even on my foggiest days.
As I had hoped, my personal Lupus diary now serves two purposes:
- Not only to share a more complete picture with about my ups and downs of life with Lupus; but also
- To empower me to communicate better with my doctors, my family, and myself.
First, A Personal Diary … and Now, A Book
Unexpectedly, writing in the new diary format for myself and learning so much about the importance of health diaries led me to realize that we all need a way to let the world know what life with Lupus is really like.
So, I decided to share what I’ve learned to help other Lupus patients track their lives, too.
That’s the purpose of my new book, Lupus Diary: Track Your Life with Lupus—Body, Mind, and Spirit. Just published, it’s a companion to my first book, Live a Beautiful Life with Lupus: Habits and Rituals for Thriving with an Autoimmune Disease—Body, Mind, and Spirit. Both books are reflections of my determination to live well and abundantly with this awful disease.
Sharing My Life with Lupus….
I invite you to read my blog posts, under the heading “Olivia’s Lupus Diary Entries,” to get a glimpse into how I’m living my life with Lupus. Because I use the same format as the pages of the Lupus Diary book, it’ll also give you examples of how I write my entries and give you inspiration in knowing that you’re not alone in this battle.
To Learn More….
To learn more about what I’m learning about Lupus, please also visit my other blog, Live a Beautiful Life with Lupus, where I share more tips about thriving with this autoimmune disease from a body, mind, and spirit perspective. From “Learn About Lupus: Did You Know?” snippets and “You and Your Doctor” tips to beautiful life mantras and quotes, I write the site is my labor of love for all of us. <3
If you have any questions or thoughts about this site or my books, please contact me here.