First blog post about living with EDS an invisible illness.

Hi my name is Emme Hill. I am 19-year-old who tries to live as ordinary of a life as anyone else except that never seems to really work with having Ehler-Danlos and all. What is Ehler-Danlos you ask?

“Ehlers-Danlos Syndrome, often referred to as “EDS” is a collection of heritable connective tissue disorders. Either directly or indirectly, Ehlers-Danlos Syndrome is known or thought to alter the biology of collagen in the body (the most abundant protein), which can lead to multi-systemic symptoms. Each type has certain physical traits and with notable exception to the most common form, the hypermobile type of Ehlers-Danlos Syndrome, most types have a known disease-causing gene.

There are physical characteristics that are common to all types of Ehlers-Danlos Syndrome, including hypermobile joints (joints that move in greater amounts than expected) and skin involvement, such as any of the following: soft, stretchy, saggy, too thin, easy bruising, easy wounding, poor wound healing and/or atrophic scaring.

Each type is a distinct entity and may have very specific and unique features. It is highly improbable to have more than one type of Ehlers-Danlos syndrome, but as they have features and ‘biology’ in common, each type may appear to have variable features of other types.”(http://ehlers-danlos.com/what-is-eds/)

For me personally Ehlers-Danlos or EDS means six surgeries to keep my body from falling apart and or dislocating or falling apart. It means being tired all the time being in constant fear of doing something because you might injure yourself. Or you might do nothing and still injure yourself. It means having chronic migraines because you’re constantly aware of every movement and every pain and worrying if it’s a new pain when in reality you’ve had two surgeries on that knee (Emme calm down you’re good).  It means having IBS-D on top of everything because you don’t have enough to worry about let alone having to concern yourself about what foods your body can eat. If I’m even hungry because usually if I’m in pain I force myself to eat because I need to take pain medicine. But it also means becoming bff with your body. I know my body better than even my mom does. I can pretty much diagnose myself with something before seeing the doctor and when the doctor confirms I’m like ‘damn I’m good’. It also means sitting in super comfortable positions that should be illegal for EDSers because it usually hurts us in the long run. My personal favorite is the W position but due to my right hip surgery it’s more like V because only my left can. My other favorite is the sitting on the leg although recently I’ve had to quit that because my knee would fall asleep and I’d go to get up and almost fall. (sorry mom :/) It meant taking the elevator from 6th grade to 12th grade because of constantly being in crutches and really it was just easier to not play how many flights of stairs can i do before my knees buckle. It meant having teachers/staff/peers comment that they didn’t see anything wrong with me and I didn’t need an elevator pass even though I had six surgeries. Proceeding with me going home hating myself because why the hell wasn’t I normal. It also meant people trying to relate to my six surgeries with the ‘oh once i broke my toe in high school’ and I’d just say okay because well you probably healed whereas I don’t. It means smiling and saying I’m doing good because the moment you say you’re tired it becomes a contest even though I didn’t sleep because my foot was hurting me all night and i’m weaning myself off of pain medicines. It means I’d say my back is hurting and someone else saying don’t even complain to me about back pain because they have back problems. It means learning to pretend to because it’s just easier.

I wanted to create a blog to help me cope but also to help others cope. But also created this to help bring awareness to something that has long been a battle of mine not just physically but mentally.

 

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One thought on “First blog post about living with EDS an invisible illness.

  1. nursesnotions says:

    Great post, welcome to the world of blogging! I don’t have EDS, but have heard of it because I have a rare syndrome called Nutcracker syndrome and my fellow “nutcrackers” as I call them have it EDS as well. I can truly relate to the part in your post where you mention really knowing your body. My parents often roll their eyes at me when I tell them there’s something wrong or I talk about a symptom that I have. They sometimes think I’m a hypochondriac, but I know my body really well. I knew I had Nutcracker Syndrome before any of my specialists did. When you have chronic health issues, you just really get to know when something isn’t right with your body. It makes things a lot easier.

    Liked by 1 person

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