I am so excited to present my blogging friend Sara as our final Guest Blogger for MLWT’s ” Our Voices For Lupus Awareness ” event this May. I have been reading her blog for more than a year now and she shares a perspective towards living well that is what MLWT represents…stepping towards a life that consists of many things, with lupus being only one of them.
Sara Gorman, author of Despite Lupus: How to Live Well with a Chronic Illness, talks about her new book and her experiences with systemic lupus:
What is the book about?
Despite Lupus outlines the steps I’ve taken to regain the health and wellness I lost due to years of struggling to overcome lupus. After my diagnosis at the age of 26, I refused to admit that my busy lifestyle and indomitable attitude were exacerbating my illness. It took four years before I realized that my strategy of pushing through the pain wasn’t working. In fact, it was ruining my chances for a long, productive life. Thus, I decided to stop fighting life, and start living it. I made it my top priority to start living well with my illness, doing everything I could to proactively make my life better. The book describes the steps I took to reach that goal.
Why did I decide to write the book?
Once I started seeing the physical and emotional benefits of the changes I was making – cutting back my hours at the office, postponing my plans for pregnancy to start a more aggressive drug therapy, and cutting off my hair (or what I had left of it), for example – I realized that I had a story to tell.
My life with lupus was improving and I was the one making it happen. It took a lot of patience, effort, and keen self-awareness, but it was worth it. I was suddenly enjoying life, not dreading it.
Since my diagnosis years earlier, I had been searching for a proven, proactive approach to dealing with lupus, but could never find anything. I was frustrated by the conflict of emotions I experienced – the feelings of vulnerability and desperation. I wanted to know, not only why I was experiencing these emotions, but what I could do to prevent them. Once I started to figure it out on my own, I wanted to enable others to do the same by documenting the steps I was taking to make that happen.
What is the key to living well with a chronic illness?
There are several essential steps to living well, but the most critical thing is to admit that you’re worth the effort. You owe it to yourself to live well – in fact, you deserve it. For all too long, I was doing myself, my family and friends a disservice by ignoring my symptoms and pretending like lupus wasn’t affecting me. My body was literally falling apart, but I tried to act as if it wasn’t. Not only was I hurting myself, I was affecting those around me by not valuing myself enough to stay well.
Do I still struggle to make good decisions to live well with lupus?
You bet! Every day at 3:59pm, when I head up to my bedroom to take my 4:00pm nap, I think, “Why do I have to take a mid-day nap in order to make it through the rest of the day? No one else has to do this.” But, before I get too upset about it, I realize how wonderful it is that I’ve figured out a way to manage my fatigue. I used to lose my entire evenings to sheer exhaustion, but not anymore. By taking a measly hour and a half out of my day to rest, I can function like a normal human being for the remainder of the day. I get my evenings back and the chance to feel normal again – which is priceless.
Feel free to stop by my website, www.despitelupus.com to read an excerpt of the book, check out a few reviews, and catch up on my blog. Hopefully, you’ll like what you see! The book is $19.95 plus shipping. Feel free to email me at firstname.lastname@example.org with questions. I look forward to hearing from you!