Tyleno1

lesbian couple on their wedding day after 72 years together, photographed by Thomas Greyer

I don’t think healthy people every really get chronic illness.

I have a friend I know from when we were both 6. She is the only person living nearby and so she saw me go from walking through limping to wheelchair on a daily basis. I keep her updated on my health even tho we rarely hang out anymore. She was gonna come over yesterday and I had to cancel. She asked if I can’t hang out later that day. When I said i won’t feel better later, that if I feel that bad in the morning later will only get worse she got annoyed and “joked” that I’m just finding excuses. And I was surprised, she knows all about me being disabled after all? So, a bit taken aback, I told her it’s a normal thing for me.

“But you got the diagnosis now, aren’t you better?? I thought you’ll get better now”

She was honestly surprised and it made me realize a thing. They don’t get it. They don’t get that getting diagnosed only equals benefits like welfare or parking spot for us, and sometimes better pain meds but that is just like pushing luck. That it’s a forever thing. That that one day we felt good a week ago was just a bright spot and doesn’t mean we won’t need our aids anymore, cause chronic illness is not linear and will make a great comeback in next four hours, and the next good day is planned on when we’re 70. Cause when abled people are sick, they get better. And our illness is just an excuse for them. And when we say we will never get better they think we’re being dramatic and pessimistic. And I don’t think they’ll ever get it, cause to get it you need to live it. And I want my friends to stay healthy and not go through hell.

me waking up with a new chronic illness symptom that i haven’t experienced before:

i was referred to as an epileptic by a doctor for the first time yesterday. even after having the tonic-clonic seizure in february and my eeg showing epileptiform discharges, the most my neurologist will say is that i *may* have a “tendency towards epileptic seizures”. he won’t say i have epilepsy. he had been blowing me off for a year, saying my focal seizures were probably “near syncope”, or a “weird migraine”. it’s finally gotten to the point where he can’t dispute my epilepsy anymore, but he still finds a way to phrase in such a way where he doesn’t have to admit he was negligent. i told my new rheumatologist about my history with seizures, and she looked over my eeg. she said i should be medicated for epilepsy. but my neurologist will not put me on medication until i have another tonic-clonic seizure, and unfortunately it’s not really her decision. i told her that my neurologist said that eeg’s can show epileptiform discharges in 1% of the non epileptic population. she laughed and said “you’re epileptic, sweetheart”. it was such a throw away statement for her, but it meant so much to me. this is one of the first times my seizures have been taken seriously. i think things r finally looking up

wandering the hospital at 3am

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people are saying everything is a love language nowadays. and they right. love is in everything u fucking geniuses