More About Sara
Welcome, I am so glad that you’re here! I’m Sara, a disabled spoonie* warrior, biboliophile, and professional napper aspiring to find happiness with chronic pain/illness. My primary diagnosis is Hypermobile Ehlers-Danlos Syndrome (hEDS). I also live with Post Orthostatic Tachycardia Syndrome (POTS), Autonomic Dysfunction, Mast Cell Activation Disorder, Dysphagia, Esophagitis (likely Eosonophilic), Intractable Migraine with Persistent Aura (it never goes away), Occipital Neuralgia, Cervicogenic Headache, Bilateral Hip Dysplasia, Asthma, GERD, IBS, chronic fatigue, anxiety, depression and more. This means that I am almost always hurting somewhere, nauseous, seeing stars, dizzy/wobbly and exhausted. Every zebra has different stripes, and these are just some of mine. Please realize that I am just one person with EDS and cannot possibly represent everyone with the condition. Many have it worse, but pain is not a competition. Mine is just as valid as anyone’s.
Like many people with EDS, my diagnosis was and is a journey. Along the way there have been many people (professionals and otherwise) who did not believe I was in pain, or had difficulty understanding the extent of my illness. I hope that sharing my experience here will give purpose to my pain, and possibly even make the road a little less bumpy for other zebras out there still searching for answers. I hope that I can become an advocate for others living with chronic illness and various forms of disability.
Whether you are a fellow EDSer or migraineur, someone living with another form of chronic pain/illness, a loved one of someone with an invisible illness, a professional searching to expand your education beyond the text, or just someone who stumbled upon my corner of the internet, I hope that you find something here that resonates with you. Above all I hope you know that YOU ARE ENOUGH. I am not my illness, and you are not defined by your challenges, whatever they may be.
*A spoonie is a person with a disability who identifies with Christine Miserandino’s brilliant explanation of what it is like to live with chronic illness/pain/fatigue, The Spoon Theory. You can find the original post here: The Spoon Theory Written by Christine Miserandino
A/N: Brain fog, or difficulty processing, is an unfortunate part of my illness. I apologize in advance for any typos or grammatical errors. Please bear with me, I think the message will be worth it.
Why I Write
I grew up in a family that tends to believe in keeping personal matters private. Illness and pain are intensely personal topics. So why then, you might ask, am I sharing all of this on the internet where everyone and their brother can see it?
The answer is complicated my friend. The tldr version is this: Throughout my journey I have found immense comfort in the writing of those on a similar path.
Other blogs made me feel normal, and generally reassured me that it could be done. I think I owe it to those other spoonies* out there, frantically searching the Internet for reassurance at 3 AM (if you’re anything like me), to share my story.
Also, In my day to day life, I hide a lot behind a smile. Because of a combination of brain fog and my general approach to life, I find it really hard to talk about my struggle face to face. I even find myself being overly positive about how I feel with my doctors. Positivity is important, but we can’t expect the general public to begin to understand what it’s like to live with chronic illness, or be supportive, if we don’t start sharing our reality. That can take a lot of forms, but for me it’s easiest to write it. I don’t promise that I will share everything here, but I do promise that what I share will be honest.