When someone expresses their sympathy about my life with lupus, a typical response just rolls off my tongue. “It could be worse.” It’s true. Life with lupus could be many magnitudes worse than it is for me right now. Crippling arthritis, unbearable chronic pain, migraines, brain fog, and recurring mental…
Half the time, when I tell someone that I have lupus, I’m not sure that they believe me. And when I say that I work 40 to 50 hours a week and study part-time, I can understand how my health status sounds even less credible. But living with lupus is…
I’m wary of taking advice from anyone, because people rarely understand what lupus is or how it affects my body. They merely know of someone who has the disease. Most people don’t appreciate that it’s a diverse illness with no simple solutions or easy fixes. What works for one person…
“You’re an inspiration to many.” I get it all the time. Do you want to know a secret? I never wanted to be an inspiration — not like this. The cost of being “inspirational” is going to bed every night knowing that no matter how many or how few hours…
Whenever I write about lupus, I refer to it as a separate entity. In my mind, my journey with lupus is a battle; it’s always been a “me versus the enemy” situation. However, the significance of mentally detaching myself from the disease didn’t occur to me until recently. I…
Many things about my relationship with my partner, Jordan, are unique. As two 20-somethings, each living with our own chronic illness, our experiences are a world away from those of our peers. In most “normal” relationships that involve chronic illness, there is a caregiver and a care receiver. In…
Living with lupus makes me feel a little precarious. I can’t fully enjoy the little victories in my health due to the fear that they’ll immediately be followed by a downhill slide. Last year was a doozy: For most of the year, I seemed to move endlessly from one…
Being an adult isn’t anything like I imagined it. I also never imagined being diagnosed with a chronic illness at the start of my 20s. When I was younger, the idea of being an adult was exciting. Freedom, responsibility, and control seem to be things we want until they are…
Everyone is entitled to a bad day. But for me, “bad” can’t seem to contain itself to just 24 hours. It usually comes in waves that last weeks or months. The defiant optimist in me likes to think that, in a way, I need bad days because they help…
In a previous column, I discussed how there are two polar personalities within my body. There’s the energetic, “anything is possible, never back down, and go-go-go” Kristi. Then there’s the lethargic, down-in-the-dumps version who can’t find the motivation to make herself lunch. I’m usually one or the…