♿ Welcome To The Disability Masterpost ♾️
Some of my conditions/diagnoses include:
- hEDS/POTS/MCAS trifecta
- Structural spinal issues such as arthritis, stenosis, spinal cord involvement due to multiple bulged discs, scoliosis, and bone spurs
- MECFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
- Autoimmune issues (potentially systemic lupus), definitely Reactivated Epstein Barr Virus
- (C)PTSD
- Bipolar II
- Autism & ADHD
I use a cane on either side of my body depending on which side needs more support that day, or a rollator if I'm going further than I can walk comfortably with my cane or know I'll need to sit down at all. I experience widespread chronic pain ranging from moderate on a good day to low end of severe on the regular nowadays. Additionally, as I mention briefly below, I have been largely neglected and deliberately mishandled by the great majority of my "care team", and therefore am widely untreated/self managing all of my conditions. Multiple medical specialists, primary care doctors, emergency room doctors, even my disability case manager and housing social workers are piss-poor at their jobs and I don't always have the energy or resources to hound every individual whose job they're getting paid to do involves the basic task of keeping me alive, which they can't seem to execute and still get paid for. I have been left to buy electrolytes on my food stamps, beg for money from my friends and on the Internet for disability aids, and live in a body akin to a Saw trap until I just give up fighting for myself and die.
I very heavily identify with the cripplepunk movement and community, I have no interest whatsoever in being an "inspirational handicapped person" or any shit like that. I'm a poster patient for medical neglect and malpractice, and very strongly believe that formal diagnosis and especially proper treatment is absolutely a privilege in my world when it shouldn't be. As a very heavily researched and informed individual I'm incredibly pro-self-diagnosis broadly speaking, of course every fruit cake has its nuts, but in almost every single case a person's own insight to their symptoms and conditions and abilities really informs the diagnosis.
The entire disabled community needs to get their heads around the fact that there is always going to be someone with a more severe degree of symptoms or supports needs than yourself. This is literally just a fact of reality and can co-exist with the fact that you still need whatever level of support for the degree of symptoms that YOU have, too. This does not give you license to speak over or for people who may even share your exact diagnoses but are in a more severe situation than you are, you can and should only speak towards your own experiences and feelings.
Me & this blog are also incredibly watchful and listening of intellectually disabled folks, as that is one demographic I do not fit in, and I enjoy connecting with folks who have IDs on here and anywhere really in order to better understand firsthand what individuals with intellectual disabilities have to say regarding their communities and how I can be a better ally to y'all.
If you have any questions about disability, chronic illness, mental health, mobility aids, medical self-advocacy, or literally anything, I'm not a doctor but I can certainly share my experiences. Feel free to inbox me!
