The Invisibly Ill

Chronic illness is something of a Catch 22 and a dangerous one at that.

You are expected to take care of yourself, to eat well, to behave according to your local societal norms – be that by stringing seashells through your labia or scrotal sack as in the case of some Pacific Island cultures or wearing a three piece suit and tie and going to the “office” in order to sit in a big carpeted cardboard box and move around imaginary units that control real ones as in most Western cultures.

You are expected to be nice, to be co-operative, to be productive. To work and play and raise your kids and care for your pets.

And then there is the real you. The you who must do things your co-workers and friends never even imagine. Pills, diet, exercise, therapy, rituals, etc.

I mean, how about me…(if not interested in my personal gunk, scroll down and read the really important bit. It starts at the number.)

My diagnosis is Asperger’s/High Functioning Autism with co-morbid depression and anxiety. And MS. And severe allergies. And severe short term memory loss.

I have to get up every morning without the aid of ANY stimulant. No coffee, no caffeine, no tea, no soda, no eggs and bacon. I have to get dressed and take a shower without any soap or shampoo. My clothes have to made of cotton. I have to check my calendar for doctor’s appointments, my bank account for money to cover those appointments, check my memory book for uncompleted tasks.

I have to plan my whole day around rituals and routines that allow me to function outside of an institution.

When I get up my slippers are at the foot of the bed, my epipens are slotted into the right hand one, my day book, calendar, cell phone are lined up on my desk so I’ll see them when I check my mail, my clothes for the day are neatly laid out beside them, and the belt pack I wear (think a hipper fanny pack) contains all I’ll need for that day – wallet, money, camera (to take pictures and to make photo shopping lists), medication, emergency information, emergency whistle, multitool.

If I have a special task or appointment that day – my tool list, paper work, motes for the task, and any extras – cooler of food/water – will be in my desk chair so I’ll have to move it before going on with the day.

If I am going out a packed bag will be leaning against the front door where I’ll trip over it.

It’s inevitable that I’ll forget something – if I am lucky it won’t be a stove burner, or that the cat is outside on her custom made harness and run. At best it might be a photo ID or the paper the doctor needed me to fill out.

It’s inevitable that my roommates will leave something that could kill me – meat juice or cologne or something lying just where my hands will fall on it as I reach for something else.

It’s inevitable that I’ll need to go to a different store for the only food I’m not allergic to, or to find a public bathroom that was not fogged with Febreeze.

It’s inevitable that I’ll embarrass myself and a cashier by having to leave her line because he used hand sanitizer moments before and that I’ll have to move to another line. (“No I am not racist, no I don’t care if you are gay, no, I’m allergic to those goddamn gels that are goddamn everywhere, even the doctor’s offices.)

But I am supposed to smile and be nice and work my shift and do my chores and not drag you down when my mood – again inevitably – turns dark.

I am not supposed to get angry or frustrated or depressed. I am supposed to “man up” and deal…

..and let’s be frank here. There are people with much worse problems than I have, lots of them, in fact. So if my days are hellish, then theirs are what precisely???

Okay then. Now, that you get the idea, how’s this for a thought. It’s not just me…

133,000,000, that’s 133 million people in the US suffer from a serious chronic illness. That’s 45% of the population. 11.4 million of those are like me, uninsured and paying for their illness out of pocket ( http://www.nytimes.com/2008/08/05/business/05health.html) and given the invisible diseases like Lyme disease and Multiple Chemical Sensitivity disorder that number may be far far higher.

But there is another problem – most of these are invisible diseases. MS, Lyme, the milder forms of autism, anxiety disorder, depression, PTSD, ABI and TBI, and many other diseases – diseases that can kill you – either directly or through suicide – are also INVISIBLE.

No wheelchairs, no blood, or pee bags, or immediately scary behaviors, or missing limbs, no immediately visible outer symptoms or otherwise obvious ones.

And people who have these diseases are quite likely to be discriminated against and are frequently held to impossible standards. Asking a dyslexic to write out dozens of business forms or a person with dyscalculia to manage numbers, including their check books, is like asking the guy with no legs to run a marathon.

None of them can do and all three experience pain when asked.

I will never pass a math class and large crowds scare the fuck out of me. I’ve had people tell me I am not autistic because I behave “normally” in situations where I know people but that does not mean that you could plonk me down in Times Square. I’d panic and be hurt in minutes.

You can’t ask the guy with Lyme to work a full day; the fatigue would kill him.

You can’t ask the Chronic Pain Sufferer to just stop whining, it’s been years already.

You can’t ask the deaf guy to critique the symphony or the blind guy to drive your car.

These are just purely rational and undiluted facts…

but it does not stop people.

  • A woman in Maine was arrested for drunkenness when she had never tasted alcohol in her life but she had a brain disease that destroyed her proprioception and motor control.
  • A teenage boy in the early stages of MS had his cane confiscated as a weapon in California
  • and another teen boy had his epipens taken away and locked in an office safe for the same reasons. He nearly died when it took teachers almost eleven minutes to get those back out of the safe and to the cafeteria when the kid touched a tray that had a peanut butter smear on it and then his own face.

People with invisible illnesses have trouble with the police and TSA – autism related injuries being a common example, with security in public places – people with severe chemical allergies who wear masks and gloves in public often have real issues in stores, and even in schools and churches. My godson who is dyslexic and dysgraphic will never ever pass an essay test but his college eligibility relies on his ability to do so. (And no, IEPs do not cover testing situations for reasons that are basically batshit in themselves. You don’t take the wheelchair away when the guy plays B-ball.)

Abuse and rudenesses also abound.

And not just for us but also for our caregivers and families.

A local kid’s mom found a nasty note on her car after parking in a handicapped space and letting her blind teenager enter the store without her while she locked up.

Nor was this an isolated incidence, this had happened to him and her several times.

What the hell is wrong with us?

According to the CDC, of all sources, 52% of our population will be handicapped by a chronic illness by 2030 and quite a few of these people will actually be children aged 11-18.

If adults like me are getting bullied by other adults what are those children in for?

They will be raised in a hypocritical society where the MINORITY of people will be healthy and where those healthy people will say “man up”, “push thru”, “you illnesses don’t count”, “what’s wrong, retard”, and worse. Bullied by their parents and other adults, bullied by their peers, and bullied by society, how will they survive?

What makes this horse crap even worse in my not so humble flamingly angry opinion is that we live in a PC society that loves to slap labels on people including labels like “patient”, “invalid” and “handicapped” – labels with our “inferiority” built right in (invalid – in valid – not valid).

The thing the labeling PC types don’t seem to realize is that labels are not at all helpful.

In fact, labels merely serve to highlight faults or perceived faults. I can talk to someone all day and not notice that they have a clubbed foot until some one asks me what I thought of the “handicapped girl/guy”. After that I will always be fully conscious of this beings label and their foot and relations will get awkward. If it’s more obvious, I still have the kind of mind that equates “wheels” with “legs” as both are used to move around…other than that who cares? Apparently a scary number of people.

But I digress.

Even worse than that singling out process is that this form of labeling allows abuses.

I know an woman who uses her autistic children as excuses to get out of doing what she wants to do. I once went as an adult autist (with four diagnoses including a research college that studies people like me); and was heckled and abused by all the parents there who did not feel I was autistic enough and who also felt my relative independence – I was alone there but my guardian was a block away in a cafe – was a threat to them and to their need to be seen as the “unfortunate person with the autistic child”.

I’ve heard other stories about other rallies for other diseases since then and that blows my mind. I mean Munchhausen-by-Proxy used to be considered a disease in itself. Now it appears to be an accepted norm.

To make things more fun, it’s not just individuals who do this either. A certain large breast cancer charity has been know to manipulate people into giving them money to fight cancer and saying all the right things but somehow the money never seems to go to patients. A certain heart association was investigated for the same thing.

And I’ve seen studies that show that PC behavior in college classrooms have led to unfair advantages in fields like medicine where being able to actually operate on a heart might be more important than having darker colored skin. Or where the ability to actually fix the nuclear power plant might be more important than having lighter colored skin. If you save my life or Manhattan, I don’t care what color, gender, or whatever you are, but I do care if you can do the job.

Seriously, what kind of person attempts to create a level playing fields by bulldozing it and then planting landmines?

But let’s return to the invisibly ill here. Society’s perspective of us is just as skewed. We are not handicapped people, we are people with handicaps and it is only by seeking our common abilities that we are ever going to be able to progress sanely and rationally rather than in a culturally or politically or financially involved fashion.

Give everyone the same care at the same cost, have every one produce something for their society – let the Aspie engineer be an engineer and don’t sit him down in endless social meetings, let the social mavens handle the meetings. Let the guy who can build things build them and let the person who can paint things paint them. Let them paint what the engineers build, let the engineers design things for them to paint. Stop trying to fit people into some sort of plan and plan around the people.

And thus realize that even the sick can still contribute and are still people. I can’t add but I can write. My Lyme friend, K., can’t leave her home but she can quilt and sew and weave. My cancer ridden buddy, E. played the drums until he died, another friend with cancer helped run the law firm she had founded until she died.

Let people be people and let them contribute as they can, until they no longer can. Stop making them into things like medical chart numbers, or burdens, or the butt of jokes. Stop using them to manipulate others, and stop manipulating them.

And when the person can no longer contribute in a way that is meaningful, then give them a choice. We allow our pets euthanasia, why not our people?

Why not use their corpses for food or water with their consent – we already allow organ donation, after all. Why not go further?

The real question here is are we going to survive as a specific society or as a species?

And frankly, I’m worried we won’t last as either if we keep marginalizing, isolating, and killing our population…be it by bullying or by denying them health care.

So maybe it’s time to say good bye to the great American Empire?

If so then…

We’ll meet again (boom) don’t know where (beeeeeeeeeep), don’t know when…”

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