Guest Voice: My creativity was a lifeline before I had a diagnosis
Thinking strategically about my various projects brought me joy
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Although I live with a chronic illness, I’ve always tried to shape my life with as much freedom and independence as possible. This was true long before anyone put a name to my condition: IgG4‑RD.
The ability to make my own choices and decide for myself how a day should unfold has always felt essential to me. When exhaustion makes me dependent on others in ways I never wanted, autonomy becomes something fierce and precious. My family understands that, especially my husband. He has no choice, really; I am stubborn to the bone, determined in ways that are both a blessing and a challenge.
I’ve always had countless interests and hobbies, which weren’t just pastimes before I received my diagnosis. They were a survival strategy that I would recommend to anyone. They were the reason I could still get up in the morning.
When you’ve lived for years in pain and with bone‑deep fatigue like I have, waking up can feel less like pushing off a blanket and more like crawling out from under several concrete slabs. Someone once told me it’s like “being hit by a train in your sleep every night.” It’s a grim comparison, but painfully accurate.
Yet, if I allowed myself a moment to think about one of my creative projects — how I might approach it, which materials I’d use — something inside me would begin to stir again. A faint bubbling of life, a reminder that I was still here.
At that moment, the last thing I needed was someone telling me to slow down, to “think of your body, your fatigue, your pain.” My husband quickly learned that this kind of well‑meant caution only drained me further. So he let me be. He let me live.
Strangers, however, were another story. The unsolicited advice I received could fill a book: alternative healers offering energetic scans, ancestral cleansings, conversations with foremothers — always for a generous fee, of course. Sometimes they even asked permission before advising me. And when I politely declined, they gave the advice anyway. I still don’t understand how that logic works.
My hobbies, on the other hand, never demanded anything from me. Instead, they offered joy even when my body couldn’t participate. On days when I could only lie in bed or on the couch, I watched online tutorials by kind, generous people sharing their knowledge for free on creating art.
Now that treatment has allowed me to work again, my gratitude is enormous. To those YouTubers, I owe you more than you will ever know. You were my lifelines.
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Note: IgG4-RD News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to IgG4-RD.
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