
Scene 1: In the waiting room of the doctorâs office, early morning, winter 2015
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 the pen at her lips, eyes the clock on the wall, and continues scribbling. The clock ticks. A cuticle dangles from her finger.
Thatâs me, the neurotic character starring in a dramedy. Except lately I was in a psychological thriller. (Think: The Twilight Zone meets ERâor Black Mirror meets Greyâs Anatomy.)
Most of 2015, doctors dismissed my pain as just another flare-up. It took a Saturday full of ER tests to reveal an extensive infection. By night, the colorectal surgeon removed an abscess that put a look of horror on her face during her subsequent apology. This was a scary development in my 20 years with inflammatory bowel disease (IBD). It had always been merely a side character. Now IBD took center stage, looming over every other aspect of my life with a cloud of uncertainty.
Now I was a few weeks into recovery, jotting down questions at the doctorâs office:
Can the abscess come back? Will I develop more complications, like a fistula (hole/channel type thing)? Does this mean I have Crohnâs, not colitis?
I kept the personal questions to myself: How will I keep working, socializing, dating? I was always the strong leading lady of my lifeâexcelling at my duties while maintaining meaningful relationships. This emergency snapped me out of this âthriving 20-somethingâ role. I had been playing the part too well.Â
Scene 2: In the examining room of the doctorâs office, later that morning, winter 2015
My gastroenterologist (GI) couldnât answer all my medical questions. Instead, he had a personal one for me:
âDo you want to meet a patient with a similar storyâa complicated one?â
I tightened my lips. Iâd read horror stories from patients before and always ended up shutting my laptop, choosing to talk with a doctor instead.
But there I was, sitting before my GI, with no answers or way out of this horror show. âSure,â I said.
Scene 3: Back home in my bedroom, at night, winter 2015
That night, I dialed up my GIâs patient with shaky hands. She answered the phone briskly, like she just awoke from a great nightâs rest. She was driving to a night class she teaches on the side.
To say our conversation stunned me would be an understatement. Amid stories of her surgery and fistulizing Crohnâs disease, were delightful anecdotes about her twins and compelling career.
The most gentle wave of relief washed over me. My hands stopped shaking, my eyes pooled with tears. As horrifying as parts of her story had gotten, IBD hadnât held her back from a fulfilling life. She had gained great wisdom, warmth and humor. After one phone call, I was back to feeling like I could be the heroine of my life again.
Later on Facebook, Iâd be reaffirmed by photos of her sweet children and work TV appearances. While Iâm the first to know a smile can mask pain, it was apparent she had found joy personally and professionally, despite IBD. Sheâd occasionally share a selfie at an infusion, or a hospital stay. Theyâd be accompanied by âGet well soon!â wishes from well-intending commenters who didnât âgetâ chronic illness. I did. And even though we remained mostly strangers, there was now this unspoken bond of understanding between spoonies.
Writing a list of questions for my GI helps meâhow about you?
***
Present-day, online and everywhereÂ
Season 20 of my chronic illness was a horror, but in five years it returned to a dramedy. Thereâs been a medical leave, a cross-country move, and a new medical team in NY thatâs helped me achieve my longest personal remission.
As Director of Social Impact at The Mighty, I work with media and nonprofit partners to get patient stories to people who can learn from them, or simply relateâfeeling less alone and more supported. I work with amazing organizations like Girls With Guts who provide resources to their communities. Every patient needs a full supporting cast of characters. With The Mightyâs launch of our iOS and Android app, people could now post directly to our community. Seeing people get support in realtime has been a highlight of my story.
There is an unparalleled connection when someone shares a raw glimpse of their illness alongside beautiful moments. The spoonie I talked to that night nearly five years ago, coupled with the community members of The Mighty, helped me see how IBD has brought both my lifeâs greatest sorrows and joys. Itâs in this delicate grasp of the good, the bad, and the ugly, that Iâve received true validation in my health journey.Â
The Mighty community âgets it.â If you have IBD, the new Crohnâs & Ulcerative Colitis Support Group especially will. Your posts wonât be met with âGet well soon,â as if IBD is a head cold. Thereâs a collective understanding of the unique IBD experience. We will celebrate your bright spots. And whatever spot youâre at in your narrative, weâll meet you there.Â
This is the support group I wish I had years ago. Itâs never too lateâIâm excited for my fellow Mighties to join me here now.
If youâve reached the end of this story, congratulationsâyouâve already turned a page into a bright new chapter of your own.Â
source https://www.programage.com/news/Season_20_of_My_Life_Was_Scary__Until_a_Spoonie_Made_a_Guest_Appearance_1598986814089033.html
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