the phrase "say her name" is to used honor and bring attention to the murders of black women by the police or the state.

this language exists for a reason, whether you realize that or not. whether you care or not.

my family knows most of it, and my diagnoses, but i don’t tell them how hard it is day to day usually so it feels like they don’t understand a big part of how hard things are for me.

this is especially hard if you got worse after moving out (which is how most chronic conditions work by the way, they get worse in your 20s usually). most of my family will understand i need accommodations but not the extent of it. and it’s embarrassing, i don’t want them to know.

i think so many more people know someone with a disability than they think, even if they’re very close to them. my family likely doesn’t think of me as disabled because disabled is a bad word to them.

for every cripple who has to sit through countless doctors appointments and somehow continues to carry on.

for every cripple who is dealing with an unsupportive, ableist, and/or abusive living situation and keeps on existing.

for every cripple who deals with a hateful society that doesn’t even consider them (as a person, friend, consumer, or partner) and wakes up in it every day.

This morning my co-worker was talking about how she can feel the pain in her joints during rainy, humid days. Another coworker said that she doesn't, and her response was "it's because you're too young," and I had to hold myself back from interrupting their conversation. That coworker is only two years younger than me.

I was diagnosed with EDS when I was a baby. I was very lucky, and was able to receive treatment (whether good or bad) quicker than others. However, EDS caused my hip dysplasia, it caused the condition that affected my mobility to the point where I needed three corrective hip surgeries; it was the cause of my bone not forming, I needed a bone donor to aid in correction. I have three long scars on my bikini line where Dr Caroll (from Shriner’s in Utah) cut into me in order to give me a better chance of having less limited mobility.

EDS isn’t just me being able to play bendy straw with my hands, it isn’t just me having to deal with “fake dislocations, it’s subluxations so it’s not that bad”. It caused my scoliosis, it caused my arthritis from my joints going out of place so often. I was diagnosed with osteoarthritis as a child, but as I got older, my arthritis spread to more places. I have burning nerve pain that makes me want to die, I have partial paralysis whenever my body decides to attack me spontaneously, I have dystonia, I have hearing loss, allergic reactions, and pain in every joint in my entire body. From head to toe, all of my joints, all of my muscles.

EDS is something that has severely impacted and negatively effected my entire body. It took everything from me, it took my already limited mobility, it took my peace, it took my mental health, it took my most beloved hobby ever— riding horses. I cannot sit to play piano, use my hands for my guitar, sit in a chair for more than 30 minutes without my back muscles screaming.

Thank you helping me see my mom and my kids. You will never understand how appreciative I am.

I now need help getting back home in time for welcome day at my college so I can get my ID, books and tour the campus