Non-visible health issues/disabilities

As a person with disabilities that are often missed by others (mild to moderate cerebral palsy that impacts limb control and mobility, loss of vision in one eye, degenerating bones and joints, chronic nerve-based pain similar to fibro myalgia, etc.) who rely on sight alone, I find it frustrating to snidely be told, "I don't see any challenges." I am sure that this happens to many others who have challenges that aren't immediately visible.

What are your thoughts on non-visible issues? If you have them, how do you deal with them? Or if you don't have them, do you think that people use them as an excuse to whine or simply that they don't like to talk about them? Or, of course, somewhere in between?

I myself deal with above remarks with sarcasm and self-deprecating snark. But that's me, I do that to everyone who assumes I'm "just fine," and ignores me when I try to explain. I've also gotten used to having to dumb things down, and to have to explain multiple times to the same people what my issues are.

As such, I do not worry about other people's disabilities, it's none of my business. I am not employed to ticket people for using handicapped spaces. And I know people who have had knee and heart surgery with handicapped placards. Unless you can see through their clothes, chances are you won't notice their condition, but it's still disabling enough to justify their use of the spaces.

edited 19th Apr '11 12:47:50 PM by blueharp

I'm high-functioning autistic and have PTSD.

I'm actually glad I'm autistic, because I think it gives me a lot of joy (obsessive interests and stimming) and some useful abilities. And because if I weren't autistic, I wouldn't be me.

The PTSD, obviously I'm not glad I have it, but I sort of feel it's a badge of pride that I survived all the abuse I suffered. And sometimes I feel I'd rather not recover from PTSD, because that would be like betraying the suffering child I used to be.

Regarding the invisibility of those issues, that really bugs me. I hate when people assume I'm a neurotypical person, and expect things from me that I'm not actually capable of. Or misinterpret my actions that would make perfect sense if they knew I was autistic. Often I wish that autism was more like Down Syndrome - readily recognizable in facial appearance.

It seems to me that even people who know I'm autistic have a tendency to forget or to think I could overcome it with effort, whereas I haven't seen people do that with visible disabilities (my best friends both have CP). Though I'm not sure how much of that is my disability being invisible, and how much of it is that most of my limitations are more 'this is much harder for me' than 'I absolutely can't do this'. One of my friends with CP uses a scooter and can walk short distances, the other one can't walk (apparently she can use a walker short distances, but only does this in therapy). The one with the scooter has sometimes gotten people claiming that if she can walk sometimes, she should be able to walk all the time, so that makes me think it might be that.

What would be a good name for that distinction? Absolute vs relative impairment?

If I'm asking for advice on a story idea, don't tell me it can't be done.

I have both Dandy Walker Syndrome and Asperger's, both of which are not visibly apparent. Interestingly enough, it's only over the Internet that I have ever had people not believe it when I mention my conditions, mainly the Asperger's one (and I strongly suspect the two times it's happened that it's the same person, who I never got along with). Perhaps people are more likely to be suspicious of what someone says in a more anonymous format, or perhaps people who don't believe things like Asperger's are real are more likely to speak their minds on the Internet versus in real life (probably a combination of the two).

However, I have heard about people not believing it, especially about Asperger's (the Dandy Walker thing is probably too rare to get many stories about people being told "you're just making that up") and those stories scare me because then I get afraid I've just been too lucky so far. Sometimes I also get worried that Asperger's isn't real or something because of those things on the Internet, even though I was diagnosed by a real psychologist and a lot of the traits would explain some of my behaviors that puzzled people before I was diagnosed (such as the fact that I tend to assume people mean what they say unless they make it obvious that they're kidding, among others).

In doing research on the 'net, I have found that there seems to be some links between cerebellum disorders (like Dandy Walker) and autism, and thus I suspect that the Dandy Walker caused me to have Asperger's in the first place. Here are some links:

http://en.wikipedia.org/wiki/Dandy-Walker_syndrome

https://sfari.org/news/-/asset_publisher/6Tog/content/autism-shares-features-with-cerebellar-syndromes?redirect=%2Fnews

Since Dandy Walker can have various manifestations, in case anyone is wondering, the main way it has affected me is that I have hydrocephalus and that's what the shunt is meant to control (it's why I have a Forehead of Doom in my baby pictures). It also made for motor skill delays and may be connected to Asperger's (as mentioned above).

The distinction between relative vs. absolute impairment is a good one to make, although even with relative impairments there's still a point at which one must make the choice of "is it really worth it to try this hard?" It's probably just me, but I'd probably more support the "able" people doing more to understand those with disabilities in general rather than people with disabilities trying to force themselves to be "normal" and "get over it." Some of this might just be the "pull yourself up by your own bootstraps and if you try hard enough you can do ANYTHING!" mentality in the USA culture, I'm not sure how things are in other countries. And that's a more general topic that would be appropriate for a separate thread, possibly. (I may start a separate thread on this so it doesn't clutter up this topic.)

edited 19th Apr '11 1:56:57 PM by Rainbow

"although even with relative impairments there's still a point at which one must make the choice of "is it really worth it to try this hard?""

That's the point. I suspect many people don't understand that, and think you should exert Determinator-style effort to be normal if it has any chance of working. When they hear a person functioning normally by working ten times as hard, they seem to think 'ooh, so inspirational' instead of thinking 'that person needs better accomodation so they don't have to work as hard'.

If I'm asking for advice on a story idea, don't tell me it can't be done.

I'm blind in one eye, hasn't really limited me any besides not being able to stand 3D movies and that I had to get a waiver to serve in the military initially.

Apart from that it's all gravy. Movement issues are something else though, I have a slight loss of mobility in my legs from having two pins in each leg.

@Ettina: I don't really like the whole "inspirational" thing either because there's the flip side idea of "that person with your disability did those amazing things, you should be able to do it too!" I kind of doubt it's people with disabilities who consider themselves to be inspirational and "so brave" just for trying to live their lives. There's a difference between giving pitying charity and giving someone accommodations (ex. giving a blind person a handout rather than giving them accommodations at a job so they can make their own money).

[[blockquote]]I suspect many people don't understand that, and think you should exert Determinator-style effort to be normal if it has any chance of working. When they hear a person functioning normally by working ten times as har*d, they seem to think 'ooh, so inspirational' instead of thinking 'that person needs better accomodation so they don't have to work as hard'.[[/blockquote]]

Exactly. To list all of my conditions would be an awful exercise for everyone involved, since even I don't remember them all, but here are the ones that both really get to me, and that people don't see:

• Spastic diplegia CP (in my legs, but also has a frustrating effect on my hands)
• No functional vision in my left eye (also no depth perception, and monocular vision)
• Severe ADHD (that is treated)
• The "one of the most extreme manifestations of her type we have ever seen" of Hypermobile type Ehlers Danlos syndrome (this was very helpful when we first realized I had it - it's rather rare, and it's genetic) -> http://en.wikipedia.org/wiki/Ehlers-Danlos_syndrome
• Chronic nerve- and joint-based pain caused by the EDS, CP, and other conditions - this pain is extreme and is never abated. The lowest I ever am on the 1-10 pain scale is a 2 or a 3, and the highest I've been is a 9. It's exacerbated by the fatigue.
• Degenerating joints and bones - according to my last spine-head MRI, in spite of taking care of myself, my bones and joints look like those of a heptogenarian. I'm turning 18 next month.
• Sensory Integration Dysfunction - a condition often associated with those who are autistic, it essentially means that my brain and nerves literally process sensory input differently. Trying to explain to people that I Hates Being Touched (remove that s), and why, is a nightmare. Here, this is good enough: http://children.webmd.com/tc/sensory-integration-dysfunction-topic-overview
• Postural Ortheostatic Tachycardia Syndrome (POTS or Postural Hypotension) - causes dizziness, swelling in my feet and legs if I sit for too long, and a high risk of fainting (for me, anyway, it's high). The sudden drops in blood pressure are dangerous, and disruptive, as I have to stand still for at least a solid minute before I'm sure I'm not gonna go crashing to the floor. Another link to explain: http://en.wikipedia.org/wiki/Postural_orthostatic_tachycardia_syndrome (I do have dysautonomia, by the way, and it's also a companion condition to EDS sometimes.)

Because I work very hard in school to excel and do my best, people don't recognize that I need help to be able to do that. Or if they do, they expect me to be Inspirationally Disabled, which...isn't what I'm after. I like helping others with disabilities, yes, but...it's not what I'm in school to do. Or they expect me to be able to, if I "try harder," do things that I physically just can't - like sit up straight, write essays by hand (I do all of my work except math on a computer, because I can type much faster than I can write), or hunt people down in my free period (as if that's all I ever do with the time) to tell them that some accomadation is not being met and I need it fixed.

I personally find the typical American attitude of "if you try hard enough, you can do ANYTHING" - well, no, I still can't run the mile without passing out, no matter how many damn times I do it - to be almost destructive to people who have limitations.

I don't have much in the way of disabilities per se, but I do have a fair amount of physical and mental health concerns.

I have Hashimoto's Thyroiditis combined with polycystic ovary syndrome. Hashimoto's caused the joint weakness that resulted in me dislocating my knee, and some other mild joint problems. All together, it means that I'm generally unhealthy and that I put on weight really easily (as in, if you watched what I ate in a regular day, you'd swear I had an eating disorder), so I tend to get shit for being fat all the time. I also have mild brain damage (about a quarter sized spot of necrotic tissue in my thalamus) from where a jackass took a book to my head in highschool and knocked me unconscious, but I'm not sure if it's produced any symptoms or not.

Mentally, I have mild PTSD and a generalized anxiety disorder that stems from physical and sexual abuse as a child.

The mental problems are starting to go away since I moved away from my family, but I still occasionally have panic attacks and try to claw my skin off. I'm not very outgoing, I have trouble in social situations or crowds, and I tend to worry about everything and work myself into hysterics if things aren't going very well.

"I don't know how I do it. I'm like the Mr. Bean of sex." -Drunkscriblerian

I have dyspraxia and some considerable anxiety issues which may or may not be ocd and general/social anxiety.

For dyspraxia, which makes me highly clumsy and disorganised, I didn't think people would believe my excuses, so I tended to deny that I even had a problem, and felt ashamed to ask for help - still do.

People are sometimes dimissive of anxiety as a problem, and when I have had to push myself to admit that I've had issues for years without realising, it makes me just start doubting everything again. I used to think it was normal for me to be this anxious and paranoid, and no-one ever noticed a dramatic change in my personality and behaviour.

edited 19th Apr '11 7:10:07 PM by Shichibukai

Requiem ~ September 2010 - October 2011 [Banned 4 Life]

I don't normally think of my Crohn's Disease as a disability, but it's classified as one by my school. I certainly encounter difficulties explaining it, since if I actually say what the primary symptom is (bloody diarrhea), I get told that I shouldn't have said that. And it does tend to come up, since it's the reason I have to avoid a lot of foods that are popular with the people around me. I can't just say I'm allergic, either, because then I have to explain later that actually, I can have one or two strawberries, I just can't pig out on them, but if I have the strawberries I shouldn't have any orange juice to go with them, blah blah blah . . .

That's Feo . . . He's a disgusting, mysoginistic, paedophilic asshat who moonlights as a shitty writer—Something Awful

^ What if you said 'I have a medical condition that requires that I don't overdo certain foods'? Vague enough not to gross people out, but not technically incorrect like the allergies thing.

If I'm asking for advice on a story idea, don't tell me it can't be done.

Ettina's choice may be wise for you, feo.

Or you can just carry a massive sign around, listing the problem and providing a graphic image.

edited 21st Apr '11 10:50:23 AM by AllanAssiduity

I'm starting to think a sign with a massive Wall of Text might be a good idea for me. Then I wouldn't talk 'til I was blue in the face (rather literally, I'm afraid).

So your proposed solution to an invisible problem is to make it visible? Ouch.

I came into this thread feeling ready to mope, but having actually read it, I realize how pathetic my own complaints about my health might sound in practice compared to what some of you guys have to deal with >_< I'll still indulge my graphomania, though, if you don't mind.

My physical health has two major (and heaps of minor) concerns - eyes and joints.

Hereditary colorblindness is a fun thing to listen to stories about, not to experience. Reportedly, by the end of his life, my paternal grandfather saw the world entirely as black and white, though I don't really know how much of this is hearsay - my father only confuses shades of orange with shades of green, while I... well, it's in early stages, as I understand. I can barely tell green from red apart with my peripheral vision to the point where I can only get my head straight about it by staring straight at it. But that's not really the problem, this was a minor factoid discovered while I was undergoing tests to determine why my left eye's eyesight decided to suddenly take a nosedive. I'm still undiagnosed, with a standing hypothesis of "optical-effect migraine", which is basically when my migraines are so strong, they knock my eyes for a loop and that actually damages the nerve endings of my left eye - those were the only thing that was determined to be damaged through 4 MR Is, a couple of EE Gs and a lot of ultrasounds. Basically, every time I have a migraine, my left eye whites out leaving me with photosensitivity (and the accompanying burning pain from seeing anything brighter than twilight), colorblindness and an inability to refocus in it for up to an hour at a time, and every time it returns to normal, it doesn't return all the way, the left eye keeps getting farther and farther away from the right one in its focusing alignment (I believe the term is astigmatism) which causes discomfort, headaches and yes, some more migraines. This is aggravated by one or more of the following:

• bright lights (snowblindness especially)
• straining to see something in dim lights
• sleep deprivation (I tend to suffer from anxiety-based insomnia from time to time)
• mental strain (yeah, I'm still working on getting that Ph.D.)

So while it's not something crippling in any convenient sense, it imposes a lot of fun reasons for me to suddenly curl over in pain that engulfs the left half of my skull.

The joints... well, I have conflicting symptoms. Yes, they hurt all over my body (literally - every place that has a joint is affected, it's a bitch for the jaw and the spine), but there is no real logic to how they come and go in waves, they act up in cold and dampness, go away with warmth and rest, they act up on sudden atmospheric pressure changes (which usually also cause migraines and - voila, eye pains!) and that the pains are dulled, but not killed off, by various arthritis-related medicine. Also undiagnosed, the only definite things here being that I had inflammation in both my shoulder joints (since cured, but pain was not gone) and that some of my joints are hypermobile. Yes, my knees do bend sideways a bit, and it hurts like hell when you can dislocate a wrist just from throwing a ball for your dog =|
But my pain threshold and I aren't on speaking terms, so it doesn't significantly impact my day-to-day life, at least not until I have to run somewhere for whatever reason.

None of my psychological problems were ever even brought to a doctor, as I self-manage pretty decently methinks, but, as I said, I have a lot of anxiety issues, bouts of paranoia (though I managed to turn it towards being Properly Paranoid by accounting for every reason that may cause me anxiety with a backup plan), a sliding sense of self-worth, splotchy memory and acting like an overachiever whilst being an underachiever... or vice versa, because it's a YMMV moment. It all comes down to upbringing - from my parents forcibly retraining my left-handedness into right-handedness and then systematically crushing what was left of my self-worth over the fact that I have dismal handwriting and fine motor control skills (a fact they admitted only when I turned 17, this was not a fun birthday), never do as good as they expect me to do (yes, yes, graduating from school AND from university with honors clearly wasn't enough, and pretty much destroying my health over a Ph.D. doesn't seem to be doing much for that either) and generally being an unplanned child (learned that just after turning 21 - that was a fun birthday, too) that is the only thing that's holding their marriage together for the last 20 or so years.

The biggest offender is the memory though. I have perfect recall of every video game I have ever played from how to get past That One Level to how amazing the graphics felt at the time, but I'm having trouble remembering the names and faces of my classmates. I can hold a decent argument about the Bible with quote support but I can't remember the faces of some of the girls I've dated - an activity I started indulging in less than four years ago and am not that good at. I am generally good with faces but dismal with names and dates and geography is an impenetrable mystery to me most of the time to the point where I can find my way around a place I've been to before with my eyes closed (literally! I tried!) but will get lost in a place I'm visiting for the first time regardless of how detailed the map is. GPS programs for my iPhone helped that a lot, though. It's like my brain decides at random which things to keep and which not to, and then keeps what it keeps in as much detail as humanly possible, at the expense of everything else. That made exams a nightmare every single time, yeah.

Which brings us to the second biggest problem. Self-worth. A lot of people complain that I 'pretend' to be worthy of respect for achieving things that are common for 'normal people' and that it is irritating. Perhaps it is, I cannot deny them that. Nonetheless, when I'm glad I managed to do something that someone else finds mundane, I am earnest - it means I did manage something that gave me significant trouble before. Ah, cooking, how did I ever not learn you before?

edited 21st Apr '11 12:23:25 PM by Noelemahc

Videogames do not make you a worse person... Than you already are.

Epilepsy tends to be non-visible unless you have (a) grand mal seizures (b) in public. My own is petit mal and under control with medication. I can't claim it massively affected my life, although for years until it was controlled it meant I couldn't even learn to drive (I still haven't; that's just incompetence/anxiety). It does get tiresome having to explain things like that to others. However, as it's a well-known condition at least you don't get people who think you make up having weird health problems for attention whoring purposes, which is a reaction some face.

"Well, it's a lifestyle"