My Spoonie Origin Story

When I talk about my disabilities, people pick up on my underlying stress, trauma, and grief about the subject right away. If they’ve never been chronically ill themselves, they often assume the illness was borne from these emotions.

In other words, they believe that my illness is to some degree psychosomatic, something I could overcome if I only changed my thought patterns. I get where they’re coming from, the mind is a powerful place. Of course it can affect the rest of the body. And believing that most chronic illnesses are at their core psychosomatic gives healthy people a sense of security, knowing this could never happen to me – I’m not a hypochondriac like her.

But what many healthy people refuse to accept about my chronic illness is that it began right at the end of one of the happiest years of my life. And I tried ignoring it and just getting on with my life. I tried not worrying about it. But that didn’t work. That’s the thing about having a disabling chronic illness – it’s impossible to ignore.

When it all began, I had been happily dating Aaron (who is now my spouse) for just a few months, I was living with two of my best friends, I had just run an ultramarathon, and I was wrapping up my first semester of senior year of college. Sure, there had been subtle hints of something brewing in my body for awhile. For one thing, I had suffered from chronic headache and monthly migraines since I was 9. But up to this point, it hadn’t interfered much with my life, and I was incandescent with optimism and joy during this time.

Then, quite suddenly, my life turned upside down. I developed my chronic migraine disorder on December 4th, 2015, just two days after my 22nd birthday. I started having disabling migraines as often as twenty days out of every month, with intractable headache in between. Dozens of other unexplained symptoms snowballed rapidly in the years that followed.

I tried to ignore my disabilities for the first half of 2016. I told myself the pain was just a sinus infection because I believed what so many healthy people proclaim: That the best way to stay healthy is to think positive. I survived with nothing but a couple rounds of antibiotics and a whole lot of Ibuprofen and Excedrin. I had none of the medications or aids that I depend on now to live a normal-ish life. No ice hat, no migraine glasses, no Sumatriptan, no muscle relaxants, no dietary modifications. Nothing.

To this day, the memory of the pain during those months still haunts me. I have flashbacks to days of being curled up in the fetal position, sobbing into Aaron’s chest in pure agony.

I remember the way I would duck out of events to kneel over the toilet, fighting the nausea and shaking head to toe from the pain. It happened over and over and over again: Hide in the bathroom, shake, and sob… Then pull myself together and wipe mascara off my face. Then return to the rest of the world, try to pretend everything was fine, and repeat. Ignoring my illness for so long lead to a case of complex-PTSD I’m still grappling with today.

This is why I decided to create a chronic illness blog and Instagram. I want to speak out against the misconception that anyone with unexplained, disabling symptoms is obviously a hypochondriac. I want to push back against the dangerous idea that telling patients to just stop paying so much attention to their symptoms is helpful in any way. I want to raise awareness of invisible illness and medical trauma.

If you want to join me in my call for change, please follow my blog and my Instagram. If you want to share your own story, please DM me or send me a message on the Write a Guest Post page.

– Abbey

2 thoughts on “My Spoonie Origin Story

  1. Marissa

    Thank you so much for creating this page. I’ve been chronically ill with no diagnosis for over 5 years now (that I recognize anyways). My first trip to the ER having to do with my illness I was told by the doctor that my symptoms were psychosomatic. I left the ER in a wheelchair and having difficulty talking. If it wasn’t for the nurse telling me there is definitely something wrong and it’s going to take a long time to figure it out, but I needed to figure it out I would have cancelled my neurologist appointment that was scheduled prior to going to the ER, but wasn’t until after the ER visit. After over a year of every specialist imaginable and several tests showing I was healthy or that came back positive but were “inconclusive” I gave up and just dealt with my symptoms. October 2019 I got too bad to continue to ignore and found a neurologist in Dallas. That doctor thinks it’s Multiple Sclerosis. I had an MRI of my brain and spine a couple days ago and have a follow up with my neurologist towards the end of this month. I am so scared to go down this road again, but hopeful I might end up with a diagnosis this time. In the meantime, I will follow your Instagram page and possibly start my own to feel the support and be reminded I’m not alone in this.

    Liked by 1 person

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