Back in November, the Lupus Foundation of America, D.C./Maryland/Virginia Chapter asked me and my sister to say a few words at their annual Gala. They thought it was important for those attending to hear about lupus, not only from the perspective of a patient, but also from that of a caregiver. We were thrilled to join them!
A few weeks before, they'd seen my sister and I working side by side at an LFA DMV all-day event where I was speaking on a panel. They were struck by what a close, supportive relationship we had. In fact, they referred to my sister as my "watchdog" - ushering me off for my mid-day nap, assuring my co-presenters that I would be back in time for our presentation, and sharing her experience of what a lupus journey looked like from her perspective.
My sister and I were excited to share the gala stage together, and I joked at the beginning of our speech that evening that as along as we didn't spontaneously break out into show tunes from our childhood, I thought we'd be okay.
Here is a copy of what I said that evening. I can't stress how important it is to have supportive, loving family members in your corner when battling a chronic illness. I was and am surrounded with a husband, children, parents, in-laws, and friends who continue to offer emotional and physical support. But I am forever grateful for the love and care my sister gave me during my darkest days with lupus. I'm thrilled that we've had sunnier days to share since then, too!
When I was diagnosed with systemic lupus I was 26 years old. I was young, fiery, and independent - none of which were compatible with a chronic illness that inflicted debilitating fatigue and immobilizing pain on its victims.
When I was diagnosed, I was also a newlywed. I had been married just six weeks when my husband and I found out I had lupus. You can imagine how difficult it was to work a chronic illness into the life of newlyweds. Overnight, my husband became my caretaker, and we both struggled to learn how to handle our new roles.
At the time of my diagnosis, I was, and still am, a little sister. As a little sister, I'd spent most of my life trying to keep up. I was always trying to show that I was tough enough, fast enough, and smart enough to hang with the big kids. So that's the way I approached life with lupus. I thought that if I was tough enough, fast enough, and smart enough, I could outrun and outlast lupus. Of course, that's not the way a chronic illness works. In fact, as I was employing my strategy, I was literally running my body into the ground. And there, to pick up the pieces time and again, was my sister.
She made midnight runs with me to the ER, and nursed me back to health on many occasions. She cooked for me, cleaned my house, and weeded my garden. She drove me to doctor's appointments, and fought with my insurance company. If she found out I was working late, she'd call and gently harass me until she knew I was on my way home from the office. If we were all going out for the evening, she would always come separately, so that she could drive me home early when, inevitably, I'd practically collapse from fatigue, pain or both.
Eventually, I learned how to make better decisions on my own, and was able to take steps to live well with my illness. But I'll tell you this: the support I received from my sister, the kind you don't even have to ask for, is one of the main reasons I'm able to stand up here and be with you tonight.