I remember myself as more cohesive before diagnosis. It was easy to connect the dots when it came to my personality. While unbearable stubbornness has been a fundamental part of me since I was born, there weren’t nearly as many polar opposite sides of me as there are now.
When I first started exhibiting symptoms of lupus, I was so worn out that I stayed in my apartment for months. I’d moved to a new town and had no connections there, so I would sit on my balcony with my cellphone and talk to people on social media. What…
Before my lupus diagnosis, I don’t think I knew what it felt like to be powerful. I also never knew what it felt like to feel almost powerless. And that’s the funny thing about my life: To know how it feels to experience one extreme, I need to have…
When I was a kid, a popular party game was pin the tail on the donkey. I don’t know if children still play it, but here’s how it works: A picture of a donkey is hung on a tree or another vertical surface. Players take turns to wear a blindfold.
What would you do if you knew you couldn’t fail? I love this question because when I ask it, the face of my conversational partner lights up with excitement and confidence. And why wouldn’t it? I’ve given them the ultimate scenario, the prospect of theoretically being able to do anything.
A lupus diagnosis affects more than just the patient. Spouses, children, close friends, and even co-workers are changed when a life-altering diagnosis is delivered. While the person with the disease has physical issues, their diagnosis has consequences for those around them. For example, a parent with small children won’t be…
You’d be surprised how many times I tell the story of my tumultuous diagnosis, only to have someone ask, “Then what happened?” It’s like they think I went to bed and accepted lupus as a death sentence. Don’t misunderstand me: Lupus is a killer. If left undiagnosed, it can be…
For years, I have been chasing remission. In my mind, it was the pinnacle. I could envision low to no pain, newfound energy, and no more medications. It was like lupus utopia in my head. Someday, I would be told my bloodwork looked normal, reflecting “remission numbers.” Utopia, however,…
If asked about the one thing that’s necessary when living with lupus, I’d answer “resilience” without skipping a beat. Strength, good doctors, a brave face, and a solid support system would be in the running for second. But in a life with chronic illness, resilience makes or breaks you.
On a recent morning, I was lying in bed checking my emails. There was one from the hospital with test results from my last visit. A few days earlier, I had tried a new medication and landed in the emergency room. It turned out to be a bad reaction to…