When you’re the one who’s sick . . .
Photo by Łukasz Rawa
You’re a burden.
Let’s be clear here. I’m talking about chronic illness or illnesses. My husband lives with and has to accommodate a chronically ill wife—except during those rare breaks when symptoms ebb and I appear energetically normal.
It’s not at all the way is seems in the old British mysteries I love to read, where the wife, delicately clad in a ruffled bed cap and a soft blue bed jacket, is a shadowy figure confined to her room. Often, she is made out to be “enjoying poor health.” Actually, we’re sorry we’ve brought our conditions on our partners and our friends and we are ashamed that we have to excuse ourselves to those who want us to join them for quiet cup of coffee in the newly opened café in our town or an interesting outdoor expedition in the countryside.
When you’re the one who’s sick . . . you’re expensive.
In one recent week alone, standing before the cashier’s windows at medical facilities, I dug into my purse to shell out copays of a hundred dollars each for two different CT scans on two different parts of my body. One scan viewed my dangerous aneurysms—little deadly balloons that have stretched areas in my arteries; the other was performed in preparation for my upcoming knee surgery. The mention of the upcoming knee surgery has made me remember to include all the costs associated with that. The nose swab, the six plastic bottles of special concentrated shower soap, and the exorbitant parking fees for all the specialists’ visits. We have surely spent at least $250 on parking alone so far.
I’ve got the routine copays for doc’s visits and prescriptions (gabapentin for my persistent hot flashes, a statin for an occasionally jumpy heartbeat and maybe for clogged old lady arteries, I’m not completely sure, and Tramadol for my chronic body pain. My friend Howard’s mother sums it up as, “it’s always pain or copays,” which is true) and a host of over-the-counter meds, and appurtenances (e.g., ibuprofen, acetaminophen, eye drops, wrist and knee braces, shoe orthotics—not the four hundred sixty-dollar custom ones for the shoes I wear most often). In the first three months of last year, my husband and I saved $300 at CVS alone, not including prescriptions.
When you’re the one who’s sick . . .you feel guilty.
And remorseful that you have brought these problems on those dear to you. My husband has to take time off from work to ferry me to doctors’ appointments now that I’ve had the knee replacement and haven’t yet been cleared to drive. Also, all my life I’ve been afraid to ride in elevators alone so he accompanies me to my PT appointments on the fourth floor when no friend can come with.
When you’re the one who’s sick . . . you’re seen as a failure.
As if you’ve done something to bring on these illnesses, although most probably it was something that was done to you. Growing up, I was a victim of unrelenting criticism for behaviors a young child couldn’t avoid. I was the child of parents who abused alcohol, my mild-mannered, depressed father to the point where he became a hopeless drunk, my mother, who could drink herself into a two-day stupor, but return to her part-time job on Monday without so much as a headache, denying that she had been anything but “tired” over the weekend.
Given my upbringing, research says I’m at risk for a number of medical conditions such as chronic pain. Although I don’t recall being in pain as an athletic young person, I do recall my mother referring to my “aches and pains.” Were they the portents of my pervasive body pain later in my life?
Anyway, our illnesses aren’t our fault, and some few people realize that. When I went to the Emergency Room on Thanksgiving Day, just before dinner, because of excruciating pain like a wire, vivid in its red-hot intensity, encircling my lower stomach, a CT scan revealed that I was suffering the pangs of diverticulitis.
A large ER doctor who looked like a kinder version of the genie in the old Thief of Bagdad movie smilingly asked, “Do you know why you got this?”
“No.”
“Bad luck,” he said. “That’s all.”
I was not being held responsible for causing my sick situation.
When you’re the one who’s sick . . .
your condition(s) fluster your friends and family members.
And you wonder about the social discomfort and pity faced by those who use wheelchairs. A man I know displayed wide-wide alarm when he witnessed my husband helping me up from a low antique chair at a low heirloom table at my sister-in-law’s home. My knees were terribly painful that day. When I was getting out of the chair after lunch, he looked on, horror stamped on is face, as if he was peering at the remnants of a grisly accident.
When you’re the one who’s sick . . .you do not use illness to elicit sympathy from others.
Quite the contrary. It’s like being the only one in the family of accomplished cooks that likes loud festive meals but who can’t cook to save her life. The assignments they give you get easier and easier so as not to tax your non-existent culinary skills, and you still overcook the eggs that were to grace the top of an elegant shrimp dish, and you spill hot water on the dog that was underfoot (but not seeming to get in the way of the other cooks at the stove), necessitating a trip to the vet before everyone could sit down to the gourmet meal (minus the overcooked eggs). Or, when you can barely hoist yourself up from a chair, your knees ache so badly, and everyone else, all of them over 65, is performing what to you are extraordinary physical feats: Kneeling on hardwood floors bare of carpeting without any covering or cushioning for their knees, walking a couple of miles a day on cement pavement (my bête noire) for fun, loading the trunk of a car for an outing when you can only carry your purse (not even your book-filled public television tote) to the car, where you sink down into the passenger seat with a groan you try desperately to muffle out of earshot of the others.
You long to be like everyone else who at least seemingly are hale and hearty, with no need for care from others.
I try not to complain. But I prefer to tell my husband how I am feeling so he will understand why I’m not doing certain things on a particular day, why I can’t walk very far on the hard tile floors inside Target without having to sit down on a conveniently empty shelf in the table linens section, why I long to get back to the car before we’ve covered the distance we planned to go on our nature walk, why I don’t even want to get out of the car in the first place, why it’s taking me even longer on a particular morning to go down the beautiful pine stairs in our two-story apartment by grasping the banister with two hands and taking the stairs as a toddler would. No need to discuss the timing of meals; he already knows that I have to eat little bits of food at frequent intervals to prevent my stomach from hurting the following day.
When you’re the one who’s sick . . .you’re not allowed to talk about your illnesses.
Or even refer to your limitations, except to fellow sufferers. (Even here in these pages I’m afraid readers’ eyes are cast upward, as if they’re appealing to heaven to spare them from this boring recital that is also in bad taste.) To others, you must always chirp that you’re fine, fine, fine. That’s difficult because when you’re chronically sick, that’s about the only thing you are. Sick. Much of the time you aren’t doing much else besides being sick and what’s now referred to as advocating for your health: managing your illness(es) and your doctors and their assistants and your medications and pharmacists, and making, canceling, and rescheduling doctors’ visits, tests and unpleasant procedures.
I have recently asked my HMO to assign me someone who can work with me on prescription management. That is, what scripts I need when, how to order refills in time to get them when I need them, so I’m not constantly running out, bearing in mind that the pharmacist doesn’t fill my pescription the moment they get it. I might have to wait two or three days to actually get the meds. The personnel at my HMO—both medical and non-medical—don’t seem aware of the pharmacologist shown on their website as on the HMO staff.
I have a close longtime friend who lives with a chronically sick husband. He has more conditions than I do and his are more serious than most of mine. He did know in advance that some of his current conditions would result after he had cancer radiation treatments early in his adulthood. My friend is burdened, not only caring for her husband, but by his complaints about his health.
The rehab room the author lived in after her knee surgery.
My friend’s husband is rightfully depressed and feels hopeless, so he’s resistant to new therapies or other activities like socializing more. He’s not convinced these lifestyle modifications will help him. I know the feeling, but I am always willing to try new remedies for my conditions, the latest being dry needling for the severe pains in my upper hamstrings and the sides of my calves. (They worked.) My friend’s husband doesn’t want to exercise. I exercise a lot. Her husband is suicidal. I’m not. At least, not often. But I understand his despair all too well. My friend is only 62, so she doesn’t realize how the swift descent into aging can catch us off guard with its vicious incurable illnesses and bring us down like the point of a sharp weapon into soft flesh. My husband is 67, but has no problems, except arthritis in his hands; he only understands the limitations that that particular condition brings. Still, his condition doesn’t restrict him; he’s a landscaper, using his hands all the time, and he’s handy with tools.
I don’t tell this friend much about my daily attacks, many of them making their first, but not always last, appearance. She already has to listen to her husband’s quotidian laments. And has to do all she can to keep from falling into depression herself.
I also have a friend who lives far away but whose emails back and forth with me consist of seventy-five percent bemoaning or analyzing our medical conditions. One thing that’s shocking is that we seem to give one another our illnesses. Recently, she’s been hurting a great deal from sciatic pain. Three days ago, I started waking up with sciatic pain so intense my husband had to let me lean on him as he escorted me to and from the bathroom at 5:00 o’clock in the morning. The orthopedist diagnosed me with bursitis in my hip and gave me a cortisone injection that didn’t help. After a month of the early morning agony, my friend’s pains began to subside and so did mine. The strangest thing is when my sciatic ache began, I was unaware that my friend was experiencing that same pain. And when mine began to subside, I didn’t know hers had started to disappear as well.
An aside: Two months after I wrote the above, mine has returned in force.
When you’re the one who’s sick . . . you couldn’t have anticipated this sustained misery:
The tumor, the stomach aches, the chronic pains, the dry left eye, the fractured ankle with lasting intermittent pain and a new fear of falling, the strong, but arthritis-inflamed knees, the groin pain, quad pain, hamstring pain, butt pain. Not one of us sufferers, when we were in our forties or fifties, looked down the road to ten or twenty years in the blurry future and imagined we would be so sick. None of us thought: I’m going to have numerous clinical conditions targeting me, baffling me, costing me, overwhelming me, and overcoming me—seemingly out of nowhere.
When you’re the one who’s sick . . . some new and unexpected ailment is always cropping up.
And like the second law of thermodynamics, which in effect states that throughout the universe, which includes you, left on their own, things always get worse. So, whatever suddenly surfaces in your body is never a cure or even an improvement in any of your conditions. It’s always startlingly bad, baffling, and without a traceable cause.
In the passenger seat of the car just the other day, I yelped and grabbed my right knee. My husband asked what was wrong.
“The side of my knee feels as if an ice pick is being pushed into it,” I told him while gently massaging the area. Even though I knew the pain would go away, and probably never return I was glad I wasn’t teaching a class or undergoing a delicate dental procedure at the time. Although various pains in my knees have returned, that one hasn’t. My husband paraphrased the caption of a New Yorker cartoon in which god, looking down from on high, muses, “Let’s see. What pain should I give Lynette today?”
When you’re the one who’s sick . . . doctors are as baffled by your chronic illness(es) as you are.
Diagnoses are often dicey approximations, outright cures elusive. Tests performed in the world-class medical facilities in Greater Boston, where I live, fail to coax their causes out of hiding. The doctors, wearing white nametags with lettering too small to read, stare at their computer screens and mumble to themselves. They frown and lean away from me, as if afraid they might contract my condition from me. They are careful not to acknowledge the psychological and emotion toll your maladies take on you. As if being ill, having intractable conditions, have no impact on your feelings. Although I have to express my gratitude that when I was diagnosed with breast cancer, the radiologist, the oncologists, the physicians’ assistants—not one single medical professional ever uttered the words tumor, malignant, or cancer. I appreciate enormously that display of sensitivity. It was as if they did have an inkling of what I was going through, of my mental state. As if they did know this was all foreign and fear-making. As if they knew I had feelings beyond just the medical aspects of cancer that they each dealt with.
I’ve recently been diagnosed with fibromyalgia, although the only symptom of that condition that I have is widespread body pain. No headaches, inability to concentrate, insomnia, numbness or tingling in my extremities, depression, or fatigue, thank heavens. The pain itself is enough to bear. I suspect that doctors had to slap that label on me so my health insurance company would acknowledge my symptoms of chronic pain and pay for treatments and medication.
The rehab room the author lived in after her knee surgery.
Speaking of treatments, although my HMO is actively, one might say aggressively, limiting the use of opioids by its patients, it is sorely lacking in any new approaches besides the usual skimpy medication, acupuncture, and physical therapy solutions. All of the most recent progress in the link between the brain, gut, and body has somehow slipped by them. My HMO doesn’t have a psychologist specializing in helping patients learn to manage their minds and therefore their troublesome symptoms.
Doctors are always surprised at how old I am, and think I am decades younger than I am. I know I look young but my body knows the truth. I was always in stunningly good health: weight, blood pressure, cholesterol level (except for that time my blood was taken while I was eating lunch, when it was slightly raised). My HMO patient portal is evidence of my past good health. However, I now understand that, in my case, that great health was largely due to my age. And of course, genes.
In a Balance and Strength course, sponsored by my HMO, I was able to perform all the exercises easily. When the class was directed to do forward heel-to-toe walking exercises, I was told I didn’t need them. But I did them anyway—backwards. I was the next to the youngest in the class, but the youngest was recovering from a broken leg so her abilities were on a par with those of the participants in their eighties. Then I hit the age of seventy and got sick. A nurse (in her seventies) said she and her sister had decided, “You’re well when you get older—until you’re not.” It’s as simple as that. In the past two years I have been diagnosed not only with breast cancer, but aneurysms, anemia, low white blood cell count, and the clogged artery I mentioned earlier.
When you’re the one who’s sick . . .your caregiver has to make endless allowances and accommodations.
My persistent and enervating hot flashes prevent me from going out when the temperature is above 75 degrees, the humidity above 50 percent. Even winter dampness triggers sticky hot flashes. I aim a fan on myself at night, off and on, as the hot flashes come and go. I have a fan affixed to my desk; I carry a battery-operated one in my purse. My husband’s comfortable heat range is broad so my antics with the fans (and the temperature gauge in the car) don’t bother him.
I can’t perform a lot of errands because in the third parking lot, an ache somewhere in my body catches up with me. So, my husband does the lion’s share of the grocery shopping (which I dislike anyway). He holds the car door open wide so I can drag my swollen knees inside. Both pains there and in my groin prevent me from entering or leaving a car gracefully. Only heaven could help me the times I was able to do an errand or two on my own and someone parked close to my driver’s side door and I couldn’t open it wide enough to get my knees back in the car after leaving my destination. I finally got a handicap sticker so I can park in wider designated spots, which give me more room to open my car door.
When you are the one who’s sick . . . you realize that most of your conditions won’t go away.
They won’t even improve. That’s the biggest blow. Between a quarter and half of US adults endure chronic pain. Johns Hopkins University Hospital states that chronic pain (mostly back pain) costs more than $635 billion annually—more than the yearly costs for cancer, heart disease, and diabetes.
It's very hard, no, it’s impossible to make anyone understand what we chronically sick people are enduring unless they are in the same position. Even doctors don’t understand. Their only advice for those with chronic pain is to exercise more. I often wonder if they do. My previous PCP once told me she got stuck with other physicians in the elevator at my HMO.
“Aren’t you supposed to be using the stairs as you tell your patients to do?” I asked.
“Yep,” she answered, “but we don’t.”
A tall sports medicine doctor who was heavily padded with soft fat, laughingly told me he’d never used a treadmill or any exercise equipment at all.
When you’re the one who’s sick . . .you undergo frightening, uncomfortable tests and procedures, ordered by doctors you don’t know.
I’m jabbed and pressed, made to lay my bare skin on icy rigid x-ray tables, and told that I’m even sicker than I thought because I have other conditions I wasn’t aware of. I remind myself of what a friend told me: that everyone, even the youngest, is walking around with conditions they haven’t yet been made aware of, negative conditions that will reveal themselves in their own good time.
Despite what numerous legitimate medical websites and magazines insist on, even if you look young (I do) and people can’t believe you’ve lived seven decades (I have) and doctors take a look at your chart and exclaim, “I can’t believe your age” (they can’t) our deteriorating body’s parts are staging a revolt with the last of their strength. More and more of them will need propping up with complex procedures and a battery of pills.
A case in point is my knees. They started going bad when I was in my early fifties. They had a right to. Youthful years playing games like handball on hard concrete courts. Dancing, lots of dancing: dance classes, dance performances, and social dancing in downtown clubs at night. My knees had been used. Had I been warned of possible consequences, warned that my knees would give out, would I have danced less? I doubt it.
I arranged to have one knee replaced, even though I had been alerted by the surgeon who would perform the surgery, that the pain was unimaginably intense. But I had no choice; I was told I wouldn’t be able to walk much longer on that knee.
When you’re the one who’s sick . . .you have a lot of work to do before surgery.
That is, since I belong to my particular HMO. Maybe because I’m old I have to have a lot of tests before being cleared for surgery. But no one told me that. I only found out when, upon ending my virtual appointment with my PCP for another of our benign discussions that do not relieve any of my anxieties or confusions about relief from my conditions, I was told to see a specialist because I had previously unnoticed anemia, and by the way, have you had this blood test or that stress test and the other pulmonary test, and what does the cardiologist think about your heart? When I called to make these appointments, the various offices didn’t know who I was or why I was calling.
When you’re the one who’s sick . . .your spouse fetches what you need.
My husband learned what equipment my condition would require after I returned home from knee surgery, barely able to walk. On colorless Saturday mornings in January, before the surgery, he drove to the Masonic Center twenty minutes away from our house to sit in line in his car to pick up free used items my post-surgery knee would require. When I came home with a wounded knee, a surgical knee, a fragile, complexly healing knee, painful from skin to bone marrow, with uncertain balance, overall lack of strength, and pain pain pain, he’d already gotten me two walkers, one for each floor in our house, a “bath transition bench” so I could wash my body with his patient help, a cane I refused to use, and a walker with a seat, should I care to go shopping and want to sit and rest between the aisles.
My husband helped me into and out of bed, notwithstanding the baby blue appliance I had bought for fifteen dollars to lift my legs with. He fixed my pillows and covers in ways I found I liked and even though I can now arrange my pillows and the covers the way I like, his tucking me in has turned into a nightly ritual.
When you’re the one who’s sick. . .your caregiver becomes a pharmacological expert.
My husband squinted over a chart the rehab center sent home with us
to sort out the morning and evening and meds and the ones I had to take in the middle of the night when I was groggy, and those I needed to swallow with or without food or before or after eating. The ones, like Eliquis, I was to stop taking two weeks after I left rehab, and the ones, like baby aspirin, I was to continue taking for an indefinite length of time.
When you’re the one who’s sick . . .your spouse puts his life on hold.
My husband goes to most of my medical appointments with me and there are many! My knee surgery was in February and I was recovering through March. As my husband is a landscaper, he was off until April when New England begins to toy with the idea of warming up.
He stayed by my side in a surprisingly new looking arm chair while I began my knee surgery recovery in rehab. In fact, he arrived at seven o’clock in the mornings and remained with me until seven pm, long after winter’s dark arrived, even though most of that time I was sleeping, sleeping so much that he became alarmed and tried to wake me when I was sleeping with dinner in my mouth, but I only woke slightly for a few seconds and at his urging, promised to swallow the food in my mouth. But seeing that I didn’t swallow, he made me spit it out and I went back to sleep for many more hours. For the few seconds I was awake, I was awed and grateful that I had so wonderful a caretaker. I tried to take care of him by sending him out twice a day for his cherished nature walks. When he returned, he brought me news of the loveliest aspects of the local world: the birds he saw and the rigid brown winter weeds and shrubs, and the thin perennials he identified—all awaiting spring to sing their songs or open their buds.
When you’re the one who’s sick, you are not your previously capable self.
I couldn’t imagine severe surgical pain. But after knee surgery and a lengthy stay in an unlovely rehab facility, I was not only in pain, but helpless. I would look at my foot and tell it to move and it would remain still. Twice fire fighters had to come to the third floor of my house to pick me up and set me on my feet after I had slid down to the floor.
When you’re the one who’s sick . . . you find out how much your friends and family love you.
It started with the bouquets that arrived in my hospital and rehab rooms as soon as I was out of surgery. The flowers seemed determined to stamp their bright colors onto the sullen grays and browns outside my windows. One longtime friend sent a spring bouquet in a white basket and drove more than 100 miles—three times, each way. First, to visit me in rehab, then to take care of me at home when my husband had to go back to work.
When you’re the one who’s sick . . . and you wake to a day when no joints or muscles or nerves hurt, there’s no stomach ache, nothing’s swollen, no new pain emerges as you get out of bed, you are filled with joy, wonder (you can’t account for why you feel so healthy) and exhilaration, loving your life and your circumstances for the first time in a long, long time.
About the Author
Lynette Benton is a memoir, personal essay, family history, and creative writing instructor. Her work has appeared in numerous online and paper publications, such as Brevity; Women Writing Women’s Books; More Magazine Online, Skirt! Magazine, and local newspapers (the Arlington Advocate and the Lexington Minuteman).
She has guest posted on various literary web sites, and was a personal essay columnist for the Chronicle of Higher Education, and InsideHighered.org (the latter two under pseudonyms). An excerpt from her memoir was a finalist in a 2014 memoir-writing contest. Visit Lynette at Tools & Tactics for Writers and click on the word blog for tips on writing.