So How You Doing?

by Donna Reagan

I have chronic, late-stage Lyme disease….among other things. It is not pleasant. I am not pleasant.

Most of the time I feel like I woke up with a raging case of the flu; allowed the Texas Rangers Baseball team to use me as a target for batting practice; then I was run over several times by a Mac truck transporting a load of bricks.

Those are the good days.

Lyme disease – especially CHRONIC Lyme disease, has well over 350 possible symptoms (& counting), and it is possible to just wake up with a new symptom every day. Lyme disease is definitely not one of your more boring diseases – not that I can think of any disease that would be considered boring; yet that’s not to say that Lyme disease, or any disease for that matter, is exciting because exciting is that last word I would use, and at this point I feel like I have started to just ramble, hence the title of this column. But if you DO happen to have an exciting disease, please write me – I want to know what I’m missing!

Because of the chronic pain & fatigue, and all of the mystery symptoms available to me – I have really come to hate the question, “How are you?” In fact, I have spent a great deal of time ruminating on such a question and just what the *right* answer is for such an inquiry.

So far I have not found that perfect answer, but do realize that most of the time the answer should be dependent upon the nature of the relationship already established with the person posing the question.

For instance, I have slowly come to realize that describing my current condition with a slew of vulgarities (because sometimes vulgarities are the best way to really voice my true feelings) is NOT necessarily the most suitable response to someone who has posed that question, followed by the ‘Would you like this in paper of plastic?’ query. However, I am certain that I have inadvertently taught several 17 year old boys a few new vocabulary words, which always gives me a sense of accomplishment. I am a former English teacher, which I realize is probably a horrifying thought to some of you, but I still believe that a strong vocabulary gives one a real advantage in our culture.

On the other hand, if I do not answer my best friend – also chronically ill – with said vulgarities, she thinks something must certainly be wrong with me, as if I were too sick to curse. Too sick to curse? I would have to be slipping into unconsciousness. So very simply put – you must always ‘know your audience’. After awhile though, your ‘audience’ begins to know you and will adjust their behavior accordingly, such as pretend not to recognize you in public places, change their email address, lose your telephone number, or ALL.

Strangers and sack boys may continue to ask the trite ‘How are you?’ which come to find out, is really just a greeting! In case this too is news to you, please know the only acceptable answer is ‘I’m fine, thank you, & how are you?” These people, it turns out, do not give a rip how you are doing; just as, honestly, you do not give a rip about their ingrown toenail or their bad case of acid reflux. It’s a social nicety, regardless of whether either party truly feels nice.

Then there are the co-workers and acquaintances with whom you are friendly and thereby assume they are your friends. You expect that from time to time they will ask you: “So how you doing?’ But don’t be fooled! They really do not want to hear a discourse of your maladies either. They, too, want you to say you are ‘just fine’ so you will ask in return about them. They need support. They need to talk because THEY have that ingrown toenail, acid reflux, and constipation. Can you imagine their suffering? (Insert sarcastic tone here.)

If they happen to have a sincere intent, and are willing to listen to your woes, many will likely attempt to solve your little medial dilemmas. Many people think they know the answer and if you are smart, you will take their advice, such as to exercise more; eat their diet; improve your attitude; take less medicine; but take more supplements; blah blah blah. If you don’t – BEWARE for these friendly novices know best. They will hound you and somehow make you feel guilty for having a disease that is not easy to cure….if at all.

In our society, it seems compassion is reserved primarily for those that are dying from a terminal illness. While it is true that many have died from Lyme disease – it is fortunate those deaths are the exception, rather than the rule. Knowing this causes me to be quite grateful the angel of death is not hovering over me waiting for the big signal; however it does nothing to ease the daily physical suffering which is currently my lot. This knowledge & gratitude also does not provide me with the physical energy necessary to hurl my ever-expanding semi-bedridden frame up and into action, to perform life’s important tasks…such as bake healthy casserole dishes.

Let’s face it: healthy people are busy thriving. Sickos like me are busy surviving. What is harder to face is the realization that healthy people do not find my illness fascinating. Last week, I could have been mistaken for a Multiple Sclerosis patient. This week, thanks to my twitching and tremors, I would more likely be considered a Parkinson’s patient. And thanks to the spirochetal bacteria swimming through my brain tissue – EVERY week I could be considered an Alzheimer candidate. As disturbing as that is – it is at the very least….FASCINATING! Don’t you agree?

Most people do not have the time, desire, or patience to maintain a true friendship or just a friendly relationship with someone whom is chronically ill. For the ‘friend’ – it is boring, and they generally can not understand why someone who is not dying is still suffering – especially when the friend has already generously supplied them with their solution to the problem. Soon, the ‘friends’ stop calling, if they ever called at all. No one is at your door bringing you a tuna casserole.

For the chronically ill patient, there is a loneliness that usually sets in – a sense of isolation. For the chronically ill, the question, “So how you doing?” is the question that sets them apart from the norm. A truthful answer will alienate; a dishonest answer feels like a personal betrayal to self.

Although I have had this disease for 20 – 30 years, my symptoms did not become disabling until about 2 years ago. And for these 2 years I have struggled with just how to answer that dreaded question, and I have been rather frustrated with the fact there are no books or rules of etiquette (to my knowledge) on just ‘how to be sick’ successfully speaking.

It’s certainly not that I want to be sick – quite the contrary. However, it would be nice if there were some kind of reference material on just how to behave around others when you feel like you are being tortured by your very own body. What’s the rule of thumb for that? What kind of behavior is acceptable? Quite frankly, I want to scream & cry rather often, almost as much as the desire to spit out vulgarities while at the grocery story; however I am learning that most of the time those are not acceptable behaviors. So what IS?!!!

What ARE the rules for incessant suffering? Suffer in silence? Me? Don’t be ridiculous! Over these past couple of years I have experimented with various responses to “How you doing?”

For my acquaintances and my pseudo-friends who don’t make phone calls or bring casseroles, I try to keep it brief, while still supplying some kind of useful information; then I abruptly & skillfully turn the focus back to their important lives, such as:

“I’m doing great! I’ve only been to the E.R. about 3 times this month because of the excruciating pain. So what have you been up to? When do you leave for your cruise?”

“Well, I’ve got cramps & a migraine that would kill a lesser woman. How are you?”

“Oh not too bad, thanks. But my ribs and my pelvic bone seem like they are trying to fuse and I think my coccyx bone is trying to drill me out a new orifice. And how about you? Did you ever get your bowels to move?”

“I think my husband is beating the @#$% out of me in the middle of the night while I’m sleeping.

You’re always full of information -- do you know where I can buy a hidden camera with good night vision?’

For my more peppy pseudo-friends and religious acquaintances, I try to be more mindful of their attitudes and say something like:

“Oh, thank you for asking. I’m willing to be a lot better. How’s that new Mercedes driving?’

“Well keep me on your prayer list. And you -- how are those bunions?”

“Actually I’m craving a casserole right about now. How about you?’

For awhile, it was like a game with me – trying to think of something creative or witty as a response, and tailor it to the specific person. But after awhile, I noticed the questions stopped coming, except from the poor sack boys…and my husband.

I acknowledge that it must be rather difficult to be the spouse of a chronically ill person because quite frankly, we are a handful. We are high maintenance, and most of the time we are not a lot of fun to be around. Sure, I know many of you are reading this thinking you’d love to be my neighbor because I’m obviously so cool…but NO. Actually I would probably only interact with you when I needed something because, again, I’m high maintenance and not a lot of fun to be around because of all my melodramatic agony & stuff.

But my husband…..he deserves some kind of “Spouse of a Sicko” award. Sometimes….when I’m not taking out all of my misery on him….I think he’s a saint. And I’m not just saying that because I know he’ll read this column and feel all warm & fuzzy. I’m really not, because most of the time my husband never reads my long-winded written rantings; most likely because he gets to hear it all the time – why should he make the effort to read? I am honestly saying it because I am grateful that I married someone that truly knows what it means to be committed through sickness & health. Some people aren’t that fortunate. So I count him as one of my biggest blessings.

My husband, bless his heart, still asks me how I’m doing at least once a day. And for the most part I’m honest with him and my answers range from “Actually I’m feeling a bit better today” to “I think someone sedated me” to the very succinct: “I’ve put on my clean ambulance undies, the phone is in my hand and my finger is on the 9.”

There was a time period when I was so irritated by the question that I told him that if he really wanted to know, I would just give him a number and that would indicate where I was on the pain & misery scale. Then, of course, he’d know just how far away to stay from me.

The reason I went through that time period where all I was willing to do was utter a pain scale number is because I felt so depressed that I wasn’t pleasing all the people in my life by getting better. I think there’s this undercurrent of peer pressure, if you will, that you are expected to ‘snap out of it’ and get back to health in a timely fashion. Some friends and family initially show concern when the sickness first devastates you – but then their interest in your drama soon fades after they are reassured you are not going to drop dead -- because let’s face it – life marches on and your story is boring to them, no matter how fascinating you find it. Besides – they’ve given you their best advice, they’ve prayed for you, given you a self-help book to read; therefore, any remaining illness is no doubt evidence of some shortcoming on your part.

So you ask me how I’m doing? I’m apparently plum FULL of shortcomings.

How am I? I’m holding steady at a 7.5. Send casseroles.

So how YOU doing?