Category Archives: Chronic Illness

Morality and Medical Issues, Part 2

Tuesday’s post challenged the notion, debunked by gobs of science, that illness and disability somehow are the results of moral failing. After I posted, I went running–it’s my primary treatment for fibromyalgia and for guarding against a host of other ailments–but I couldn’t escape a nagging feeling about the post.

A few blocks into the run it hit me: I feel guilty about being sick.

Again.

Still.

Damn.

I really do believe the God of my understanding isn’t doling out diseases and disabilities as punishment. I absolutely can’t get behind a god who zaps a beautiful baby/child/youth/adult/mother/father/sister/brother/friend/foe with ___ (insert name of a disease or a disability) because he or she or his or her kin didn’t read the bible enough/didn’t attend church enough/wasn’t pure enough/wasn’t repentant enough/ committed some litany of sins. I’d like to think God has better things to do than play whack-a-sinner, although whack-an-a*hole has a certain dark appeal, at least in the abstract.

The problems with the illness and disability as moral failings theory are legion. First, there’s the scientific evidence, which I discussed in yesterday’s post.

Next, I don’t know about you, but I can’t keep track of what’s considered a sin and by whom. I think the biggies are pretty universal, like murder, and yet, there’s war and the death penalty so there’s even grey area with this one. That’s the problem with concepts like sin and morality: there are all these grey areas, all these rationalizations, justifications, conditions. Murder’s wrong, except when it’s state-sanctioned, some say. Others say murder’s wrong unless it’s in self-defense and then others say even that’s wrong.

Some folks think it’s a sin to eat meat on Fridays while others say the sin is eating meat at all. Some say alcohol is sinful while others insist on imbibing it as part of the sacrament of communion. Some folks think premarital kissing is sinful while others say kissing is fine but anything more could land you in spiritual hot water if you aren’t married.

Marriage. Now that’s a subject that can land you in a pickle, but the kind of pickle differs according to which piper’s playing the pickled pepper tune. Sinfulness lurks in every matrimonial corner, begging a host of questions. How many times can you marry or remarry and who can you marry and who can marry you? What has to happen during the ceremony to ensure you won’t end up on the no-spiritual gifts list? What about your intentions regarding offspring, especially if childbearing might not be in your–or the child’s–best interest? The questions go on and on and the answers are as plentiful and as diverse and as controversial as the questions themselves. One man’s happily every after could be another woman’s death everlasting.

Plus, when it comes to linking illness with immorality, what’s the degree of sin required to yield disability? Are the wages of sin paid on a sliding scale? Is every person with cancer a super sinner while those with recurring infections frequent delinquents? Can you do enough to atone for your sins and thus be cured or are some things etched in permanent marker?

It’s all so grey and plaid and cross-hatched and full of one side versus another. It gives me a headache . . . and a heartache. And it makes me disbelieve the folks who say people who are chronically ill are spiritually unfit.

And yet, here I find myself wondering if even a little bit of my health is linked to a less-than sinless past, and if so, which one of my sins is responsible for the celiac disease and which sin’s fruit is fibro? They have to have different sources, I’m thinking, given the diseases activated twenty-plus years apart. Or, maybe they really are because my grandfather ran rum for the Mafia during Prohibition in Jersey City or because he and his father beat up a priest. (They had good reason: the priest locked my grandfather’s little brother in the basement of the church for several hours as punishment for not knowing his Catechism. When my great-grandfather confronted the priest and demanded the little boy, who had missed dinner by this time, be freed, the priest refused so my grandfather and his father knocked sense into the cleric. The little boy finally was freed but my grandfather had to quit school before he finished the 4th grade. Who’s the sinner here?)

The current uproar about repealing and replacing the Affordable Care Act is taking a toll on me in ways I hadn’t recognized until now. It’s personal. Those elected officials and pundits bloviating about who really needs health care and what’s wrong with those of us who can’t seem to get it together enough to stay healthy are talking about me. I’m one of those people for whom the Affordable Care Act was a real game changer. It enabled me to get medical treatment I otherwise couldn’t afford. I still had to pay thousands of dollars out of pocket for said care, but thousands are more manageable than tens of thousands. When they talk about “those people,” judging “them” for their moral failings and laziness, they’re talking about me.

I’m not perfect. I have made mistakes, some pretty major ones, but I don’t think I’m so sinful I deserve to suffer for the rest of my life, and I don’t believe you deserve to suffer, either. We don’t deserve to be sneered at by suits who think they’re better than us because they clutch more cash in their claws and can spit specious soundbites deep into the shadows cast by a gold-plated dome.

I am doing my best to do as much good as I can with the gifts and talents God has given me–illnesses and disabilities included. I know you are, too. When it hurts too much or I’m too sick to work, which happens, when I’m splat out like a dark-furred cat on a hot July day, it’s not because I’m lazy or I’ve been struck by the devil. It’s because I’m sick and I hurt too much. My gut is twisted not because I’m immoral, but because I’ve been glutened–again–and my intestines are being attacked and damaged in an uncivil war scientists still don’t completely understand.

If morality and health are to be connected at all, let’s remember that we are each other’s keepers, and that whatsoever we do to the least of us, we do to ourselves and we do to the one who created us. Instead of questioning the morality of those of us who are sick, question the morality of turning your back on us. We are you.

 

Illness Is Not A Moral Failing

Screaming loudly from more than a corner of the quest to repeal and replace the Affordable Care Act is this notion that moral, upstanding people take care of themselves and do not get sick; therefore, they do not need guaranteed health insurance or subsidized premiums to make insurance affordable. This line of thinking suggests we who have chronic illness somehow bring the malaise upon ourselves. We don’t lead clean, healthy lives; instead, we make bad choices which lead to our illnesses. If we put our money on organic food instead of smartphones, I’ve heard said, we’d be healthier. If we pulled ourselves up by our bootstraps and worked to become wealthy like regular Americans, rather than laying around bemoaning our ailments, we’d stop being a drain on the economy . . . and we wouldn’t need to see the doctor so often.

The trouble is, science doesn’t support this kind of thinking. Having a chronic autoimmune disease like celiac disease as I do, or Sjogren’s as my sister does, or ankylosing spondylitis as my other sister does, is more a fuction of genetics plus environmental risk factors than of moralilty. Continue reading Illness Is Not A Moral Failing

Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

Continue reading Gut Instinct: In Search of an Answer

Miss Diagnosis

A blogger I follow and admire, A Southern Celiac, recently posted about the need to check your medical chart for stray misdiagnoses and other errors. It sparked my own memories of doctors who misdiagnosed me, suggested or provided improper/crazy treatments, put the wrong information in my chart, or otherwise blundered.

This is not to beat up on doctors. I’ve had the privilege of being treated by some of the best and most competent doctors, doctors who really improved my health and well being. I’ve also seen some really bad doctors.

Dr. P diagnosed me with endometriosis when I was twenty. I was in college and the severe pain and wacky bleeding were wreaking havoc. I missed classes, did poorly on exams because the pain was so bad. His recommendation? He said I should get pregnant. I said that was a ridiculous treatment recommendation for my age and condition. He shot back, “Who do you think you are, Miss Diagnosis?” Continue reading Miss Diagnosis

The Right to Reproduce

Confession: I love higher education. I love the drive for discovery and explanation, the push for more people to know more about the way more things work or don’t work. That may be why I worked for four universities. I earned degrees from three of them, although I didn’t mix work with education.

I have a Masters of Health Sciences in Rehabilitation Counseling from the University of Florida. Now, before you excoriate me for procuring parchment from your alma mater’s arch rival, know that I went for the education, not the sports. I own nothing with a Gator on it. I spent college football season cursing the early-arriving tailgaters for hogging so much pavement I couldn’t get out of the parking lot and go home on Friday afternoons. A classmate of mine who used a chair–and competed in the 1996 Paralympics in women’s basketball–once called campus police because an RV not only illegally sprawled across three handicapped parking spaces, it also usurped the striped space next to her car, which was legally parked in the fourth handicapped space, so she couldn’t get into her car. Continue reading The Right to Reproduce

Ten Lessons Sans Carols: #8 Gluten Free Food Is Good

When people find out I have celiac disease, they react either with horror or pity, and both stem from the mistaken belief that food free from wheat, barley, rye or oats can’t possibly taste good.

“Oh, you poor thing. That’s awful! I couldn’t eat like that,” they say, managing to sound both sympathetic and superior.

I like introducing them to good gluten free food.

The Friday before Christmas, to celebrate the start of the kids’ two-week holiday school break, we made cookies. We had to skip my mother’s time-honored and beloved cookie recipes because they call for copious quantities of white wheat flour and other glutinous ingredients. I won’t even try to handle white flour because that stuff has incredible hang time. Add the sifted flour to wet ingredients in an electric mixer and watch how it billows from the bowl, wafts through the air, and sticks like snow on every proximal surface, including the baker’s hair and clothes. There’s no way not to avoid contamination, unless one pops into a hazmat suit with filtered ventilator and then turns the fire hose on to clean up afterward. Continue reading Ten Lessons Sans Carols: #8 Gluten Free Food Is Good

A Shot In The Arm

Sometimes you really need a good shot in the arm. Especially this time of year, a good shot in the arm can save you from quite a headache. ‘Tis the season of big crowds, short tempers, long lines, and even longer lifespans for germs sneezed, coughed and otherwise spewed onto every surface you might touch.

Knowing this, I got one.

A flu shot, to be precise, is what I got and I got it in my left arm. Continue reading A Shot In The Arm

Putting Your Health Stats In Your Pocket

When I received the diagnoses of celiac disease and dermatitis herpetiformis, I already had a self-concept Jerry-rigged so the bent Person With Chronic Incurable Illness identity sprang from the conventional High Achiever boxed self  taped to the scaffolding of People-Pleasing-Worryer and criss-crossed with labels like  Short White Yankee Gone South. Here was yet another aspect of me that needed labeling, another imperative to redefine myself.

Anyone with celiac disease has a multitude of labels and identities to choose from. I could emphasize the food aspect and self-identify as GF or gluten free. I could focus on the autoimmune aspects of the disease and say I’m multiply autoimmune impaired in a nod to all the ways my body attacks itself: fibromyalgia, asthma, celiac disease, Raynaud’s, etc.. I simply could be a celiac but this one makes no sense to me. The disease is celiac disease. How can someone who has it be it? This one also irks me because it highlights how society likes to use a single label to define all the parts of you, as if having celiac disease explains everything about you, from heart to soul to bones to skin. Continue reading Putting Your Health Stats In Your Pocket