Finding "Spoonie" Support with Colitis & Inflammatory Bowel Disease (IBD)
Season 20 of my life was scary... until a 'spoonie' made a guest appearance.
What is a "Spoonie?"
A term used by individuals living with chronic illness, from chronic illness blogger Christine Miserandino, who explained her lack of energy with an analogy using spoons.
“The Spoon Theory” describes perfectly the idea of limited energy, using spoons as units of energy.
It has been accepted worldwide as a tool for describing what life with illness is really like.
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Support from Spoonies while Living with Colitis and IBD
THE WAITING ROOM.
A gaunt 20-something sits with legs crossed, knee bobbing as she circles her foot. Her head darts up from a list of questions.
She pauses, pen at her lips, eyes on the clock, and continues scribbling. The clock ticks. A cuticle dangles from her finger.
A Saturday full of E.R. tests revealed an extensive infection. That night, Angelica's colorectal surgeon removed an abscess that put a look of horror on her face.
This was a scary development in her 20 years living with IBD. Now it took center stage, looming over every other aspect with a cloud of uncertainty.
THE EXAMINATION ROOM.
Angelica's gastroenterologist could not answer all of her medical questions. Instead, he had a personal one for to ask:
“Do you want to meet a patient with a similar story – a complicated one?”
I’d read horror stories from patients before– but there I was, sitting before my G.I., with no answers or way out of this horror show. 'Sure,' I said.
(that same night)
IN HER BEDROOM.
That night, Angelica called the G.I.’s patient with shaky hands. To say their conversation left Angelica stunned would be an understatement.
Amid stories of her surgery and fistulizing Crohn’s disease, were delightful anecdotes about her twins and compelling career.
After one phone call, I was back to feeling like I could be the heroine of my life again.
And even though we remained mostly strangers, there was now this unspoken bond of understanding between spoonies.
PRESENT DAY– RETURN TO DRAMEDY.
Season 20 of Angelica's chronic illness was a horror, but in five years she says it has returned to a dramedy.
Since that time, there has been a medical leave, a cross-country move, and a new medical team in N.Y. that helped her to achieve her longest personal remission.
It’s the most positive social media app I have and it makes a huge difference in my life.
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