I’ve suffered from mysterious injuries, pain, fainting, and digestive distress all my life. After years of complaining and getting no help or advice in return, I learned to remain silent. I was determined to live my life detached from the complaints of my body. I believed the root cause of these problems was somewhere deep inside my mind. In my teens I took a keen interest in neuroscience and psychology. I was hoping to find the origin to my dysfunction and distress.
I hid my pain behind books and was admitted to an accelerated medical school right out of high school. Year by year, I was becoming better at ignoring the burden of the body. Unable to alleviate my own suffering, I found peace in the idea that I could at least help prevent others from feeling this way. Thankfully, I always had a glimpse of hope that one day I would eventually stumble upon some answers through my studies.
I didn’t last long in school before the physical stress of long study hours combined with a lifetime of untreated injuries and illness brought about a dangerous culmination of problems. I was diagnosed with Ehlers-Danlos syndrome (EDS) rather quickly in relation to the downfall thanks to my own medical background and a brilliant dermatologist who had spotted my connective tissue differences back in elementary school.
The last several years have been a battle to physically survive. My ability to walk, to eat, to use my hands, and to independently care for myself have been continuously threatened by EDS. Various doctors assigned me at least a dozen disorders to manage and overall grim physical diagnoses, but at the same time a great wound has been healed.
I have ownership over my true nature and sanity. I trust my intuition. I’m learning to live with the body and mind in sync. I no longer second guess myself, for everything I ever questioned has been answered. I am whole again. I am one.The differences I tried to hide away are now free to come out with pride. I’m no longer ashamed to be slow or clumsy. I don’t have to pretend to be normal. I no longer have to live in fear that there is something wrong with me. I now understand this is exactly the way I’m meant to be.
Once the origin to my problem was defined as EDS, I excessively analyzed all aspects of how to address the situation.I read the medical journal articles, saw the nation’s top specialists, and experimented with every form of therapy available in my area. What I found was at first too hard to accept; there isn’t any medical help available within this current system. Furthermore, from both a genetics and biochemical standpoint, the idea of actually curing EDS is essentially impossible within our current framework of understanding.
Thankfully, I like thinking outside the box. Without a treatment plan from the medical system, I began to search for help in other areas. I’m on a mission to find and define a treatment guide for EDS. This treatment guide is based on ways to manage and cope with the effects of EDS in daily life. The treatments I’m exploring focus on changing one’s lifestyle and environment to match the needs of EDS. As opposed to changing or fighting the EDS itself, I’ve learned to accept it, acknowledge it, and work with it.
My goal is to prevent future problems and learn to live within the context of my current symptoms. I’m working on summarizing my findings in a book and taking a deeper look at the psychological wounds of EDS. In the meantime, I’ve come across many products, practices, and lifestyle modifications that are vital to my day to day survival. I want to share this information with the EDS community as soon as possible so I created this blog. This is in an attempt to curate all useful information regarding how to feel better and how to function better with Ehlers-Danlos Syndrome.
lifestyle tips, products reviews, innovation, ergonomics
I hope this information helps you find at least one more way to have a better day today!
Jasmine Raskas [April 2017]