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When I was diagnosed with lupus 16 years ago, I had no idea how the disease would impact each area of my life. Though I could have used a survival manual or magic genie at the time to answer all my questions, I was given good old life experience instead. Today, I see lupus as the catalyst that shaped me into a stronger, more compassionate woman, who now appreciates the small joys in life. It has also taught me a thing or two — or a hundred — about how to live better when dealing with a chronic illness. While it’s not always easy, sometimes it just takes a little creativity and thinking outside of the box to find what works for you.
Here are seven life hacks that help me thrive with lupus.
Years ago, my husband repeatedly suggested I journal my daily life. I resisted at first. It was difficult enough to live with lupus, let alone write about it. To appease him, I took up the practice. Twelve years later, I’ve never looked back.
The compiled data has been eye-opening. I have years of information on medication use, symptoms, stressors, alternative therapies I’ve tried, and seasons of remission.
Because of these notes, I know what triggers my flares and what symptoms I typically have before a flare occurs. A highlight of journaling has been seeing the progress I’ve made since the diagnosis. This progress can seem elusive when you’re in the thick of a flare, but a journal brings it to the forefront.
My parents labeled me a “mover and shaker” at a young age. I had big dreams and worked hard to achieve them. Then lupus changed my life’s course and the course of many of my goals. If this wasn’t frustrating enough, I added fuel to my inner critic’s fire by comparing myself to healthy peers. Ten minutes spent scrolling through Instagram would leave me suddenly feeling defeated.
After years of tormenting myself to measure up to people who did not have a chronic disease, I became more intentional in focusing on what I could do. Today, I keep a “can do” list — which I continuously update — that highlights my accomplishments. I focus on my unique purpose and try not to compare my journey to others. Have I conquered the comparison war? Not entirely. But focusing on my abilities has greatly improved my self-worth.
In living with lupus for 16 years, I’ve studied extensively the importance of having a positive support circle. The topic interests me because I’ve experienced the aftermath of having little support from close family members.
Over the years, my support circle grew. Today, it includes friends, select family members, and my church family. I often call my network my “orchestra,” because each of us has distinct attributes and we fully support one another. Through our love, encouragement, and support, I believe we make beautiful music together that supersedes anything negative life can throw our way.
I remember being especially hard on myself after the lupus diagnosis. Through self-criticism, I’d guilt myself into keeping my former pre-diagnosis pace, in which I burned the candles at both ends. Physically, this would result in exhaustion and, psychologically, in feelings of shame.
Through prayer — and basically every Brene Brown book on the market — I discovered a level of physical and psychological healing through loving myself. Today, though it takes effort, I focus on “speaking life.” Whether it’s “You did a great job today” or “You look beautiful,” speaking positive affirmations has definitely shifted how I view myself.
Chronic illness has a reputation for putting a wrench in many plans. After dozens of missed opportunities and rescheduled life events, I started slowly to shed my habit of trying to control everything. When my body couldn’t handle the demands of a 50-hour workweek as a reporter, I switched to freelance journalism. When I lost most of my hair to chemo, I played around with wigs and extensions (and loved it!). And as I turn the corner on 40 without a baby of my own, I have begun traveling down the road to adoption.
Adjustments help us make the most out of our life, instead of feeling frustrated and trapped by the things that are not going according to plan.
Cooking has been a large part of my life since I was a child (what can I say, I’m Italian), yet I didn’t make the food/body connection at first. After struggling with intense symptoms, I began the journey into researching alternative therapies that could work alongside my medications. I feel like I’ve tried it all: juicing, yoga, acupuncture, functional medicine, IV hydration, etc. Some therapies had little effect, while others — like dietary changes and functional medicine — had beneficial effects on specific symptoms.
Because I’ve dealt with overactive, allergic responses to food, chemicals, etc. for most of my life, I underwent allergy and food sensitivity testing from an allergist. With this information, I worked with a nutritionist and revamped my diet. Eight years later, I still believe clean, nutrient-rich food gives my body the daily boost it needs when dealing with lupus. Have dietary changes healed me? No, but they’ve greatly improved my quality of life. My new relationship with food has changed my body for the better.
There have been seasons over the past 16 years where lupus was on my mind all day long. It was consuming me, and the more I concentrated on it — specifically the “what ifs” — the worse I felt. After a while, I had enough. I’ve always enjoyed serving others, but the trick was learning how. I was bedbound in the hospital at the time.
My love to help others blossomed through a blog I started eight years ago called LupusChick. Today, it supports and encourages over 600,000 people per month with lupus and overlap diseases. Sometimes I share personal stories; other times, support is provided by listening to someone who feels alone or telling someone they are loved.I don’t know what special gift you possess that can help others, but I do believe sharing it will greatly affect both the recipient and yourself. There is no greater joy than knowing you’ve positively impacted someone’s life through an act of service.
I’ve discovered these life hacks by traveling a long, winding road filled with many unforgettable high points and some dark, lonely valleys. I continue to learn more each day about myself, what is important to me, and what legacy I want to leave behind. Though I’m always searching for ways to overcome the daily struggles with lupus, implementing the above practices has shifted my viewpoint, and in some ways, made life easier.
Today, I no longer feel like lupus is in the driver’s seat and I am a powerless passenger. Instead, I have both hands on the wheel and there is a great, big world out there I plan on exploring! What life hacks work to help you thrive with lupus? Please share them with me in the comments below!
Marisa Zeppieri is a health and food journalist, chef, author, and founder of LupusChick.com and LupusChick 501c3. She resides in New York with her husband and rescued rat terrier. Find her on Facebook and follow her on Instagram (@LupusChickOfficial).