as small as a world and as large as alone, lichgem: otterlymagic: youneedacat: ...

3:46pm July 22, 2014

otterlymagic:

youneedacat:

lichgem:

I’m beyond exhausted with the attitude that the only reason I could possibly exist publicly as a mentally ill person is because I’m trying to get attention or something

Instead of maybe I just want to BE and not have to hide a huge aspect of my life out of terror

Everyone who makes judgments about who’s ‘real’ or not is inevitably forcing lots of mentally ill people to go stealth and I don’t think that’s unintentional. Their vitriol is directed at US, make no mistake. Not just ‘fakers,’ since people will decide we’re ‘fake’ for any old reason.

Totally agreed. And their logic about who is a faker makes no sense at all anyway. Like, “You’re a faker if you put it in your URL and don’t talk about it.” Why would a faker do that? A faker would be talking about it. Not that it fucking matters, because it’s better for there to be some fakers out there, than it is for there to be people calling people fake who aren’t. But seriously, the logic makes no sense.

I feel this way about other disabilities too, not just mental illness. Anything that can be hidden or disguised as something non-disability related (I have significant visual and motor control problems, just to name a couple things, but with various coping mechanisms I can generally pass as non-disabled in both those areas).

Especially because, with the number of “issues” I have, I’ve had many people assume that I’m making up some of them because “no one could have that many things wrong with them”.

And it’s tiring to face that, especially online where I can’t prove them wrong no matter what I do. So I end up censoring myself, often, to spare myself the stress of self-defense. The stress of passing and censorship isn’t much less…but it’s enough to give me a few more spoons to deal with unavoidable issues.

I agree with OP, I think there are plenty of abled people who are happy to hear less about all that, whether I’m faking or not.

Reblogging for your commentary.

I have heard “nobody can have that many things wrong with them” ever since I was hospitalized for a bowel and bladder blockage that coincided with liver enlargement and high liver readings and severe delirium and seizures. Even though all of those things frigging go together. So I was in the hospital in a life-threatening situation and my friend posted to my blog so that people knew what was happening, and asshats on the Internet were saying “Sie can’t have that many things wrong with hir, so sie’s a faker.”

Thing is… according to several of my doctors, it’s more common for people to have multiple disabilities or health problems than one single disability or health problem. People who have one thing wrong with them are the exception, not the rule. This is backed up by the roommates I’ve had in the hospital – like the woman who had Lesch-Nyhan syndrome and myasthenia gravis and dementia and some other stuff. And the one who had this whole collection of digestive issues including short bowel syndrome and a colostomy. And the list goes on. I rarely have hospital roommates with a single condition. (But the fewer conditions they have, and the fewer cognitive or mental illness they have or are assumed to have, the better they are treated, I have noticed.)

What my doctors have told me is that basically… there’s a lot of genetic conditions where one gene being tweaked the wrong way will cause problems throughout your entire body. And there’s also a lot of conditions where one condition will lead to another condition which will lead to another. Or where the treatment for one condition will lead to another – for instance many people on atypical neuroleptics for psychosis develop diabetes and an assortment of movement disorders, some temporary some permanent (tardive dyskinesia is only the most well-known permanent one, there’s also tardive dystonia, tardive akathisia, etc.).

Here’s the list of conditions on my health record right now:

Autistic disorder, GERD, asthma, status post cholecystectomy, PTSD, migraine, convulsions, neuropathic pain syndrome, hyperlipidemia, abnormal gait, trigeminal neuralgia syndrome, circadian rhythm sleep disorder, neck pain, anismus, thyroid nodule, incomplete bladder emptying, tendinitis, seronegative spondyloarthropathy, central sleep apnea, obstructive sleep apnea, intestinal obstruction, chronic neck pain, atypical facial pain, arthropathy of cervical facet joint, cervical spondylosis without myelopathy, asteatosis cutis, keratosis pilaris, gastrojejunostomy feeding, neuromuscular weakness, adrenal insufficiency, temporal mandibular joint disorder, bronchiectasis, eczema, past history of cold urticaria, environmental allergies, gastroparesis, anxiety, COPD, joint hypermobility syndrome.

And that vague neuromuscular diagnosis is probably soon going to be changed to myasthenia gravis or some other neuromuscular junction disorder.

And yes. Every single one of these things that can be tested for, has been tested for, and the test has come back positive. Even things like the myasthenia where we did every single normal test and it came back negative, we just did a single-fiber EMG and it came back abnormal, so now we’re looking into myasthenia again. And a lot of the above conditions are connected to each other. They’re not just random conditions that happen to all occur together, they’re things that go together because one overarching condition causes several of the others. So it looks like 43 conditions but it may be closer to 5 conditions. Especially since they’ve found that a really large number of autistic people actually have genetic conditions that affect the entire body but happen to go with autism – sort of like Down syndrome, which actually has a high correlation with autism – but this goes undiagnosed most of the time unless they’re looking for it. But when they take a random sample of autistic people and start looking for that kind of genetic condition, about half of autistic people have them. I think. (There was a study. But I am remembering from like… 2003, so my memory is fuzzy.)

I’ve gotten to the point where when a doctor pulls up my list of conditions they often say something like “So what’s the underlying genetic condition you have?” They just assume it’s there, even if we haven’t found it, because I have too many things going on. Plus too many of these things run in my family, for there not to be something genetic going on. My mother has a list of conditions to rival my own, and she’s been seen at the Mayo Clinic so we know they’re for real. In fact her doctors and my doctors have been communicating to figure out WTF is going on with the two of us. I just had her entire medical file sent to my neurologist, which is how he knew to do the single fiber EMG test that just turned up abnormal.

But my point is – it's extremely normal for a person to have multiple disabilities. In fact, it’s more normal for a person to have multiple disabilities than a single disability. People like things simple, so on television and in the movies you see people with a single disability. But in real life you meet people who have bodies falling apart in every conceivable way. And I blame those media images for people who assume that people with multiple disabilities are either hypochondriacs or fakers. Because we’re the norm, not the exception, in the actual real world.

And the thing is… I’ve posted my medical records online, in the past, thinking it would convince people I was for real. It didn’t. They just used those to invade my privacy further. So I’m now pretty careful what I post online – I’ll post some test results and things like that, but still, more carefully than I did when I posted reams and reams of files showing my repeated autism diagnoses over the years (with detailed descriptions of my behavior). Don’t ever let anyone bully you into “proving yourself” in that manner. It’s not worth it and they are probably actually trying to bully you into giving them access to private information about you, that they can then use against you. So be careful.

I wish people understood really basic information about disability.

Like:

Most people who say we are disabled, are disabled.
Fakers cause much fewer problems, than people who go on witch hunts looking for fakers. (And yes, I’ve been burned by some fakers who were in it for more than just feeling disabled… it’s still not as bad as being falsely accused of being one.)
Most disabled people have more than one disability.
Many disabilities cluster, causing “one disability” to turn into fifteen different diagnoses very easily.
Most disabled people have variable functioning day to day.
Many disabled people only need their assistive technology part-time. It is not “cheating” when someone stands up from a wheelchair, or uses a white cane and then reads a book, or speaks sometimes and types other times. That is all pretty normal.
Looking for fakers does not do “real” disabled people any favors. You are not helping us. You are probably hurting us. The search for fakers routinely results in the death of disabled people – just look at what’s happening in the UK. Not to mention an increase in hate crimes.
You can’t tell by looking at someone whether they’re disabled or not. You can’t tell by scrutinizing them really hard. You can’t tell by the scuff marks on their shoes. Stop watching detective shows and thinking you know all about us. Stop thinking you know all about us. Stop scrutinizing us. Just stop.

And… uh… that’s it for now. Blech. From one multiply disabled person to another… I get it, boy do I get it.