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.
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…
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.
When I’m in the depths of struggle, only the people closest to me know about it. I need to go through the hardship and come out on the other side before I’m comfortable writing about it or sharing it on social media. I need to prove to myself I can…
I’m an all-or-nothing kind of person. If you asked me to describe my life in one phrase, it’d be, “Go big or go home.” My dad instilled the idea in my sisters and me from a young age that if something is worth doing, then it’s not merely worth…
Love is a complicated subject when you’re chronically ill. When I was first diagnosed, I had a sense of shame and guilt. I felt I no longer qualified as a whole person, and I didn’t deserve love like everybody else. If you’re chronically ill…
If you had the chance to sit down with yourself just after your diagnosis, what would you want to say? If you only had an hour, what wisdom would you impart? Would you warn of the grief and hardship ahead? Would you right the mistakes in your journey? Would…
I don’t trust doctors easily. The team of specialists at my nephrology unit who have overseen my treatment for the past three years are the only medical professionals I have absolute faith in. I have confidence in them because when I attend an appointment to discuss my illness, test…
It doesn’t matter how little I work or how much I might sleep, there is no way for my body to catch up with my fatigue. Sleeping for three hours or 14 hours makes no difference. I still wake up feeling as if I’m starting the day on the back foot.
I love my body. It’s far from perfect — in fact, it’s imperfect in more ways than I can bring myself to count. But it’s beautiful and it’s mine. It has taken me a long time to get where I am today. There have been plenty of times since my…