What Having Osteogenesis Imperfecta Is Like
Long post and somewhat of a vent rant towards the end but here's the read more. TW for general medical stuffs ig.
So unlike it's more commonly known cousin Osteoporosis, Osteogenesis Imperfecta has a different cause, but results in basically the same thing. However, I'm going to list a few side effects that are unique to OI in particular and how my body is the most normally looking corpse on earth. Because it barely functions. At all.
OI is sorta like Anemia (something I also have), but on top of not making enough iron, my body doesn't make enough collagen. And collagen is the most prevalent and important protein in your body. EVERYTHING needs collagen to function. Your skin, your hair, your bones. All of it. And my body simply skipped out on that shit and does the absolute bare minimum to keep me alive.
Symptoms include (from my experience with OI type 1 aka the only survivable one cause the other types literally kill you):
Lower bone density (like osteoporosis). I often call this "bird bones" since it makes my bones more hollow on the inside, like a birds. This of course means I break bones easily and have broken at least 8 in my lifetime, and needed surgery for 3. Most of those, including the surgeries, were from falling on the floor.
A lot harder to drown and naturally more buoyant due to the combination of lower bone density and my small stature.
I am small. Everything about me is small. I am 22 as of writing this and yet I look 17. 5ft tall, 93lbs. I am TINY. Dwarfism is common for those with OI. I am travel sized, portable, pocket edition.
Really bad skin. Like, REALLY bad skin. Constant (literally) random bruises everywhere, acne all over the body (and I mean that) that's really hard to control, you cut easy and bleed easy and get infected easy. I sunburn easy too but that might just be because I'm white and not necessarily the OI.
COLD. ALL THE TIME. COLD. This is a combination of the OI and the Anemia, as well as my lack of body fat in general. I do not retain warmth for SHIT. If I could have it my way, it would be 80°F at all times. Indoors, outdoors, at night, during the day, forever. Perfect temp. And if it's any lower than that I'm putting on layers like sweaters and blankets and turning on my space heater because I AM COLD.
Pain. Forever. The pain is forever and you cannot stop it. There is never a point in my life where I am pain free. There will always be the dull ache of my bones, my joints, my muscles, simply struggling with the burden of living. I don't even notice it anymore because I've lived with it my whole life, and yet it's always there. That dull, constant, aching pain of a body too weak to endure itself. And yet I endure.
I don't have white sclera. Like, at all. There is no part of my eyes that are white. Instead, my sclera are more translucent, allowing you to see the blood vessels beneath, giving my sclera a blue-ish gray tint. The whites of my eyes are a muted blue instead. This does not effect my vision at all and my eyesight is very sharp.
Double jointed in my fingers. Something my mother and grandmother also have (as my disease is genetic and while the disease is not gender-specific, for whatever bad luck reasons all of the girls in my bloodline inherited it, including my afab ass).
Bad joints. Popping and sore knees, back pain, you feel old and need to stretch and crack stuff a lot to stay limber. Oddly enough though I am fairly flexible.
No one takes you seriously. Ever. Want to be threatening? Forget it. You will always be viewed as weak and easily overpowerable by others. Being small doesn't help. You will never be regarded as something powerful or dangerous. No matter how hard you try. The jokes of bubble wrap and beating you first in a fight/throwing you are never going away. You are a prey animal to everyone around you and not in the alpha chad podcast sort of way, but in a more literal sense of Everything Is Bigger and Stronger Than You sort of way.
Pretty much anything and everything you can think of that low collagen levels can do to you. Because that's my body at all times. Just sad and pathetic collagen levels forever.
There is no cure and minimal treatments. You must improvise, adapt, overcome, or perish. This is a war of attrition, a battle of endurance, a test of will. You must consciously make effort to keep yourself alive or this body will happily give up on you. It does not want to live, so you must drag it with you to the finish line. It will not help you. This meatsack is deadweight. One must imagine Sisyphus happy.
I have made it this far not because I was weak and played it safe, but because I am a warrior who never stopped fighting for the right to live, and this husk I call a body isn't going to stop me, and one day I'll have the last laugh and watch it burn.
TL;DR I hate this fucking disease and I hate this body that isn't mine. But it won't stop me from living or being happy with those I care about. This burden does not define me, and I will not let it consume me. A dragon bows to no master, and no cage can hold me down.
