chronic illness

[Guest guest]

Hope everyone is having a comfortable weekend. I found this article

today & felt, although it is written in a comic vein and refers to a

different illness, it truly expresses some of the responses we

encounter when we tell family, friends, co-workers that we have

chronic pancreatitis. The author's name was not given.

The name of the website is MS Sucks (MS=multiple sclerosis)

http://www.multiplesclerosissucks.com/taxonomy.html.

The author is a 43 year old male Professor in the Computer Science

Department at an unnamed university in the USA. I think these

characterizations apply to the reactions of people after learning of

someone's development of ANY life-altering chronic disease.

I have edited for brevity and to make the article more generally

applicable.

Friends and Family (and Other Animals)

Have you read Gerald Durrell's excellent book My Family and Other

Animals? Well, this section is about some of my friends, my family,

and some others for whom the term " animal " might be appropriate. The

latter simply haven't learned to be fully functional human beings

yet. For some of them compassion and empathy are just words and they

ain't gonna have no truck with them, while others overcompensate.

The Huggers

When they hear about my problems, some of my friends try to hug me.

It's nice when they are female (more please), but I'll be perfectly

honest and say that I don't appreciate it when they are male. You may

think that I am homophobic and the obvious thing for me to say here

would be " I have many gay friends " which would be true but it would

be insensitive of me to say so. Let's just say that I have no problem

with gay people and really I don't have a strong opinion one way or

the other on their lifestyle since I am not gay so it really isn't

any of my business, except to say that I believe one's sexual

proclivities should not have any effect, positive or negative, on how

other people treat you in nonsexual situations. I have no interest in

being hugged by my male friends regardless of their sexual

orientation, much in the same way that I have no interest in becoming

an insurance salesman and possibly less interest than I had in

listening to my sixth grade teacher droning on about the snail-trails

left on the map by 16th and 17th Century European explorers on one-

way trips around and through Australia, invariably wracked by

sickness, starvation, thirst and/or the spears and blunt instruments

of the understandably resentful inhabitants.

A disconcerting number of my male hugger friends are bursting to tell

me that they want to bring Jesus into my life. They usually try to

delay what they clearly view as an epiphany as long as they can so as

not to offend me, and it obviously makes them very happy so I

overlook it as one of the unpleasant but harmless foibles that

friends are apt to have.

The Runners

Some of my friends run for the hills. They are obviously

uncomfortable with hearing about my illness and protect themselves by

changing the subject and then terminating the conversation abruptly.

I seldom hear from them again. My wife is of the opinion that my

illness reminds them of their own mortality, which is something that

they try very hard not to think about, so they try not to think about

me too. I like to console myself with the thought that perhaps the

Buddhists are right, and if so then these friends are roadkill before

the Great Wheel of Life and will probably be demoted to Tapeworm,

Third Class, and as so eloquently puts it, will in

their next life be found burrowing around in the lower intestines of

rats.

The Boxers

Those of you who have read Orwell's Animal Farm may remember

the drafthorse Boxer who responded to any problem in the animals'

proletariat paradise with the aphorism " I will work harder " , which he

did. The indomitable Boxer springs to my mind when certain of my

friends and family urge me to " struggle harder " , to " work my way

through my fatigue " , invariably observing that when they had trouble,

they worked twice as hard and their particular problem was overcome

after many years or decades of struggle and sacrifice.

That is exactly the wrong thing to do. The fatigue and other symptoms

are not in my mind, and working harder will only worsen them. In

Orwell's book, Boxer worked himself into a premature grave. The pigs,

who by then had elevated themselves to the leadership positions (the

socialist motto " All animals are equal " on the barn wall mysteriously

acquired overnight the addendum " But some are more equal than

others " ), promptly sold his body to the glue factory. This memory

brings a wicked smile to my face as I congratulate these Boxer

wannabes on their advocacy of the virtues of hard work. Fortunately,

these stolid citizens are typically blunt, no-nonsense people who

wouldn't recognize sarcasm if it stood up in front of them and bit

them in the face, so I am pretty safe there.

The Hero Worshippers

These people try to cheer me up by comparing me to other people with

<illness>. They say things like " I know this lady with <illness>,

and she's perfectly normal and leads an active, fulfilling life,

though she sometimes needs to take a few days off work, so you should

expect to be the same " . Wrong. <illness> is different for different

people depending on what portions of the anatomy are damaged and how

bad the damage is. I just can't say that enough. For every uplifting

story of an <illness> patient that you tell me, I can tell a horror

story. For every hero, I can find a mortal. Perhaps I should content

myself with saying " All <illness> patients are equal, but some are

more equal than others " (with apologies to Orwell).

The Alfred E. Neumans

Alfred E. Neuman is the mascot and emblem of Mad Magazine, the kid

with the gap-toothed grin and the " What Me Worry " caption. Some of my

friends and family remind me of him - relentlessly and moronically

optimistic. They tell me " Don't worry, be happy " as if I were A. A.

Milne's lovable but glum Eeyore, or ' manically

depressed robot Marvin the Paranoid Android. I don't think of myself

as an optimist or a pessimist - I am a realist. The reality is that I

have an incurable disease that requires adjustments to my lifestyle,

and any attempts to ignore that on my part will invariably lead to a

worsening of symptoms. A realist will try to see things as they

really are, and act accordingly:

When they see a half-filled glass of water:

· An optimist says " The glass is half full " .

· A pessimist says " The glass is half empty " .

· A realist drinks it and says " It's empty now " .

That reminds me of my favorite Engineer joke, which was told to me

recently by my neighbor:

· An optimist says the glass is half full.

· A pessimist says the class is half empty.

· An engineer says the glass is twice as big as it needs to be.

The Pig Me Toos

I read all three of my kids Scarry's story about Pig Will and

his brother Pig Won't. Pig Will was a compliant little piglet, while

Pig Won't always said " I Won't " when he was asked to do something.

The outcome of the story was that when Pig Won't realized everything

that he was missing out on by being uncooperative, he changed his

mind and became Pig Me Too.

The book ends there, but it should have continued. I'm sure that the

Pig Me Too thing must have gotten real old real fast for Pig Will and

his parents. When my oldest child wants to do something, my middle

child who is six always chimes in with " Me Too! " . This is intensely

annoying to my oldest child, who is at the age where she wants to

assert her individuality. I figure that my little Pig Me Too will

eventually grow out of this stage, but some people never do. These

are the ones who, when I say " I've been sick for a while " respond

with " Me too, I've had this sinus infection for over a week now! "

Every symptom that I have, they can match or go one better. They're

tired too. I can understand people saying this to let me know that

they understand what I'm going through and can sympathize with me,

but some of my acquaintances never get around to talking about

anything but their own experiences. Pigs, the lot of them.

The Billy Crystals

The comedian Billy Crystal once used the catch-phrase " You look

Marvellous, Darling " in a song. This is among the worst possible

things you can say to a person with a chronic illness. When you're

exhausted, in pain, and trying to put a good face on it and actually

succeeding, even the best of us (even those of us who are not Ozzy

Osbourne, not that I am in any way implying that Ozzy is not one

of " the best of us " , although the bat thing honestly gives me serious

doubts) are tempted to bite the heads off people who tell us we look

great. It's possible to look great and feel lousy. Believe me, I

should know.

The Chicken Littles

Chicken Little is the chick (the short yellow kind with feathers, not

the tall willowy kind with slender legs) from the children's story

who thinks the sky is falling. I'm sure you've met people like this

before, the kind of guy who sees the worst case in every scenario. I

hate it when people overreact when I tell them I've got this disease.

It comes over as a little false, frankly. There's probably no way you

can imagine what I'm going through unless you or somebody very close

to you have gone through it yourself. Besides, I did the overreacting

thing very shortly after I was diagnosed. So spare me. Been there,

done that.

The Dantes

I used to think that Dante should have reserved a special level of

hell for those who answer the innocent question " How are you? " with

the truth. If you are reading this from outside the US, you may not

be aware of the fact that Americans say " Hello, how are you? " as a

common greeting, expecting a boring stock answer like " Just fine! " .

They're really not interested in how you are, it's just a way of

passing the time and avoiding really getting to know people while

giving the impression that that's the opposite of what you're trying

to do. If you are reading this from inside the US, it's OK that

people outside the US think that you have weird habits. You may not

have ever given it much thought, but putting your public image in the

hands of TV and movie producers is not on the face of it a bright

idea. They mostly live in California after all, and therefore have

absolutely no sense of reality. The truth is that if the entire world

were a democracy and a referendum were to be held, the majority would

think that Americans are weird. Some of us even think your bad habits

are endearing. Don't be offended, we're used to you.

I realized that I was headed for the extra post-Dante level of hell

when a colleague stopped asking me " How are you? " . He'd say " Hello "

but not ask after my health. I took to greeting him with " Hello, how

are you, I'm fine thanks " right off the bat to confuse him. After a

while he forgot himself and greeted me with " Hello, how are you? "

before freezing with an " Oh my god, what have I said? " look in his

eyes. I let him off the hook with a " Fine thanks " . I don't think he's

ready for the truth.

The Pearls

A friend who read an earlier draft of this discussion (and didn't

immediately disown me) floored me by asking " I hope I don't fall into

one of those categories. But tell me, what should a real friend do? "

He really opened my eyes. Until then I had selfishly been locked into

what my wife calls " rant mode " . It has been terribly therapeutic to

mock some of the insensitive things that have been said to me in all

innocence, but he was right, or rather he was right about the unsaid

subtext of that question: have I really thought about it? And I

hadn't. And I had no good answer for him. So I did the honest thing,

and owned up to " I don't know, let me think about it and get back to

you " . Afterwards that grain of sand sat in the back of my brain and

irritated the heck out of me for months.

That reminds me, I often call my wife a " pearl " . The overt message

being that I think that she's a jewel. The covert message is that a

pearl is made up of layers of nacre secreted by an oyster to protect

its soft inner parts from irritation caused by a grain of sand for

example. So when I call my wife a pearl, I'm really telling her that

she's a jewel polished by exposure to me as a constant source of

irritation.

Many months later I ran into a professional friend whom I hadn't seen

in years. When I told her that I have this disease, her jaw dropped.

Now, you must understand that she's a very professional,

conservative, grandmotherly type. At first I was taken aback by her

reaction. She looked me right in the face and said " That sucks " . It

was a coincidence since I had already named this document MS Sucks

and a bit of a personal epiphany for me. Right then and there I

realized that that's how a real friend should react. I don't need

your pity (I have enough self-pity to last me a lifetime), or your

sympathy (very few people can carry it off with sincerity), and I

don't need to hear your wish that I'll get better or feel better (I

haven't and very probably won't). But honesty is never out of place,

and frankly, cameraderie rocks!