Rai-key (rai_key) wrote,
Rai-key
rai_key

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Invisible understanding

How people sound like to me:

Sometimes people are very supportive and understanding, thankfully most of the time people are that understanding. Every so often someone says something so ignorant it's like someone saying, "Those stalls are for handicapped people." to a person in a wheel chair. Or "Have you tried the stairs?" to someone in a wheelchair in an area without a ramp, "I mean your arms look strong enough, just get out of that fake chair and pull yourself on up." Who would put up with that? Or going up to an elderly woman clearly hobbling in pain getting out of a car in a disabled space with a disabled placard saying, "Those spaces are for actually disabled people, try a little harder to fit into society." Some people really say such ignorant things, if not to me they say it to someone I know. Nobody wants to accept invisible disabilities are really disabling and at least once a week, no matter how much energy I put into recovery, I get shamed for needing a little understanding.

It's not like I'm alone, plenty of people have special needs. Plenty of people go through unspeakable things, which most (wiser) people than myself never talk about their illnesses on a place as public as the internet. It's been compared to physical illnesses dozens of times, because it's easy to understand when it's right there to observe easily. When it's a little more difficult to see, some people have a harder time understanding it. We're all here to learn something and some of us find empathy or feelings difficult, just like I find logic or rationality difficult at times. Another issue is getting judges, doctors, and lawyers to understand what is going on once an invisible disability becomes unmanageable or interferes with working. Since it's not visible, people act as though the disabling effects are also invisible.

Disability is actually very hard to get with an invisible disability, usually the people who win it have a physical disability too. If you describe your worst days, they say you are lying or exaggerating. If you try to work, they say it's substantial gainful activity no matter how bad it went (oh so you were late, that seems believable, ha!). If you don't work they tell you to try working. If you fail at one job they say to try an easier job, which makes you feel stupid as hell. If you go get a job and tell them you have a disability, they treat you like an idiot and don't want to trust you with any responsibility. If you are dishonest or hide it, they get mad at you once you finally have to disclose and wanted to know what to expect. If you don't take meds, they say you need meds. If you take meds they say your recovery is progressing well and you must not be disabled. Yet a little tiny physical injury that rarely bothers me people are like, "omg are you okay, Can I help? Do you need a lawyer?" Now I'm going into more personal details & experiences.

No, help me at 4am when I can't sleep checking every single noise, because I'm paranoid and about to fall over due to how much meds I'm on; yet I'm still paranoid. Tell me how easy it is to take a logic quiz while having vocal hallucinations (this really happened to me and somehow I got a B). Tell me how I'm supposed to brain storm art ideas for Thanksgiving when I still remember losses from 2001 and can't be happy around that time. Tell me how to stay focused when I'm trying to decide if a delusion is real or not during class, then I totally missed half the lecture and the rest of the class thinks I'm an idiot and my boss doesn't understand why I can't do a simple job I'm trained for, when I missed the training due to a real illness people can't see. Then I'm reminded everyday I'm not that sick by ignorant people who don't understand what mental illness is. Other times the only thing they have learned from tv is that mentally ill people "must be dangerous & violent" and they "need to be afraid", because every newscaster is part of the divide and conquer plot. Finally all of the paranoia ends, then I feel depressed and can't leave bed. That's life with schizoaffective disorder for me and I still won't ever be approved for disability, yet politicians have no problem raiding the disability trust fund for themselves. Yet despite the fact I live with all this, people get jealous of me and make me suffer more for my obscure badly writtten venting. Yet I know I can't change them, thier ignorance, lack of compassion, misunderstandings, or jealousy. Well yeah sure I'm lucky in many ways, I know this Yeah, my life is fine and I'm lucky in many ways & ungrateful sometimes, having an invisible illness has really affected my life in dramatic ways. I've lost my independence, there are numerous jobs I just can't do anymore, and I have to settle like most disabled people need to do. But at least I still can maintain a blog. Many people find writing challenging, because the voices and everything make organizing thoughts challenging. It's hard to learn almost anything, because the illness takes energy to cope with. However, these days I feel normal 90% of the day or more. I don't hear voices anymore. I'm not fighting off delusions or weird thoughts every few hours. About all I feel is paranoia regularly, but I don't think of it as paranoia. It feels like it's really happening and it's hard to believe otherwise.
Tags: delusions, hallucinations, invisible disability, invisible understanding, paranoia, real schizoaffective, schizoaffective, schizophrenia
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