Lupus Awareness Month: My Life with Lupus

This month is Lupus Awareness month which, as the Lupus foundation of America puts it, is meant to “increase public understanding of this cruel and mysterious disease that ravages different part of the body.”  It’s a noble cause, but it will always come up short when trying to explain what it means to live with the disease.  Even those of us with a Lupus diagnosis can’t have a complete grasp of what the disease means for someone else because it’s as individual as it is cruel. However different our experiences with the disease are, I imagine we all share that invisible line –the line that separates our lives before the diagnosis and our new life after we discover what has been wreaking havoc. For me, that line was formed after what felt like

For me, that line was formed after what felt like millionth visit to a specialist when I was told that it was Lupus. This was the reason my body was attacking itself. This was the reason I was sick all the time. This was the reason I slept for hours on the weekend and felt like I was walking through a fog. My world quickly became about finding the right drugs, many prescriptions of prednisone, supplements that caused flairs, and a general disdain for all “magic bullets” that everyone felt so compelled to share with me. Plaquinel caused unbelievable itching, but low-dose naltrexone worked despite the month or two of super weird dreams. Things were manageable.

But I knew I needed to do more. Having just worked with my health coach on thyroid disease, I had learned that food was medicine, that health was far more than just food and exercise, and that a solution was out there. I just had to honor my intuition and find it.

Today I’m in remission, but I would be lying if I said that Lupus didn’t still play a major role in my life. It is, in many ways, my main motivator. It keeps me listening to my body and eating and living in a way that supports my health.  It’s also the reason I do what I do — why I gave up a career I worked so hard for to become a practitioner in the little know field of health coaching.

While I shy away from completely calling this diagnosis a blessing, I do know that it has molded my life into something I would have never imagined. And for that, I’m pretty grateful.

I would love to hear your story. Let me know what that line was like for you in the comments below.