For those of us with a chronic illness, I think it is safe to say that, initially, we had no idea how a diagnosis would impact our lives. At the age of 23, I was told lupus was the cause of my ailments – a diagnosis that had been 15 years in the making. Naïve in all things chronic-illness, I didn’t give a second thought to the fact that one illness could seep into my career, family, finances, children, and activities of daily living. The 20-minute dance with my physician at diagnosis only chipped away at the iceberg of questions that rattled through my mind.
When I first heard the word lupus, I knew no one with the disease. If only genie lamps were a reality – I could have used a helpful companion to guide me. But with no genie in sight, I was faced with one option: good ol’ life experience.
While years ago I saw lupus as this powerful entity that cost me many opportunities, today I see it as a catalyst that molded me into a more compassionate, resilient woman with a “never-give-up” attitude. I hear similar recollections from others I meet who have lupus. It seems we all have learned a lot about ourselves on this journey.
In these past 16 years, I’ve picked up dozens of tips to living as well as I can with Lupus. In my role as the founder of LupusChick, a New York-based nonprofit, and my career as a journalist, I love to share these insights. I hope my experiences, successes and occasional failures, can help others navigate the choppy waters that make up chronic illness.
Two favorite tips I implement daily
Journaling – Early on in our courtship, my husband encouraged me to journal everything that was happening. I resisted; my body was changing, and I didn’t have a good grasp on this disease. After a day’s work, the last thing I wanted to do was write more on a topic that was negatively impacting my life.
Eventually, I gave in. (He’s cute and persistent).
I never looked back. If only you could see the stacks of notebooks around my house. To others, they seem like dust collectors. But to me, they hold years of crucial information. There is no way my memory could have held onto all of this data, and I am grateful to have them to review.
Journaling for me started with simple entries – symptoms, medicine, and fatigue level. Slowly, I added hours of sleep and activities. Eventually, food, stressors and vitamins I was taking made it into the list. You guessed it – I upgraded to the largest calendar that fit in my purse.
Over the years, I have been able to determine stressors that brought on a flare, discover food sensitivities, recognize sunlight as a trigger, and track how symptoms ramped up before my cycle. I know now what symptoms may signal a flare.
While the idea of journaling may seem exhausting, I encourage you to start slowly. If a day calendar doesn’t work, try a phone app. The process may not seem helpful at first, but I promise you will come to appreciate the wealth of information on your hands.
Focus on the wins – In some small way, it is natural for us to compare ourselves to our peers, but chronic illness can twist the comparison game into utter heartbreak. There was a period after diagnosis of intense comparison to those around me who were healthy. Focusing on all of the things in life they were able to do was hurting me psychologically.
Thankfully, it was a short-lived season; I was sick of feeling defeated. There wasn’t much I wouldn’t try before I got sick, and I was still the same person – I just had an uninvited traveling companion along for the ride.
So, I made a commitment to focus on the wins. In fact, any win – big or small – went into my journal. Because, let’s be honest, when brain fog hits, who can remember all of this stuff? A win doesn’t have to be something major. Sometimes, it’s getting through the day without a nap, or being able to cook a meal without feeling exhausted. Other days, it’s traveling or getting through the day without a fever.
I’ve come to realize and accept there is a unique purpose for my life, and by comparing myself to someone who isn’t living my reality is taking me one step further from living out my purpose.
And who has time for that?
I encourage you to focus on all of the things you can do – big and small. Look through your “wins” and relish in the things you have accomplished.
What tips do you have for others? Share them in the comments.
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to lupus.