Showing posts with label Chronic Illness. Show all posts
Showing posts with label Chronic Illness. Show all posts

Wednesday, December 2, 2009

What are the Little Things that Make a Big Difference?

The long haul of chronic illness can be back breaking work, for both partners. It certainly takes a physical toll. Couples know too well the exhaustion of dealing with symptoms and daily responsibilities, which don't wait for flare ups to quiet down. Illness certainly takes a psychological toll as roles shift and communication channels get clogged with emotional static.

Sometimes it doesn't take a big thing to break the tension and reduce the stress. Sometimes a very little thing can create a momentary oasis whose restfulness and beauty can then trickle back and lighten the ordinary for a while.

For me it's making sure we always say good night to each other, out loud and with intention. It's also laughing together, about anything, especially something silly or raunchy.

What about you? What are the little things that make a big difference?

Friday, January 23, 2009

Strife at Home Can Make You Sick

From an article on Little About
Strife at Home Can Make You Sick

Disagreements between feuding spouses that continue without satisfying resolution could take a significant toll on one’s health, researchers at Ohio State University conclude. Among those who argued with ineffective conflict management skills, immune systems can be weakened and stress hormones increased.

In two trials involving 120 couples, psychologists found that partners involved in relationship disputes were at risk for sickness. The findings were similar across the marriage spectrum of participants, whether a couple was newly married or wed for many years.

One study focused on newlyweds, the other on husbands and wives married an average of 42 years. Clinicians involved with the study conclude that, with proper conflict resolution, marriage partners can enjoy less stress through real listening and honest sharing of feelings and attitudes. The men studied were more likely to withdraw from or tune out during arguments, while the women were more likely to be distressed about the argument well after a heated dispute.

With the study, mental health practitioners who try to save marriages–counselors, social workers, psychiatrists, psychologists, clergy–now have the science to prove that arguments between couples can lead to battles inside the body. Long term health effects are not yet known.

Ohio State researchers studied many couples, both newlyweds and couples who have been married for decades. They measured the stress hormones in their blood. Couples were brought in for joint counselling sessions on current disputes. Blood was analyzed intermittently.

The presence of the hormones are found to be linked not to the disagreements themselves, but to the way couples fight and resolve (or don’t resolve) conflicts. “They all had a problem that they were talking about, but those who talked about it in a hostile and negative way are the ones who had the negative immune effects,” reports Dr. George Solomon, MD, professor of psychiatry at University of California Los Angeles.

Solomon studies the way in which mind and the immune system interact. He says it’s important for couples to learn how to deal with the conflicts and stress that are inevitable in any committed relationship. In the study of the older couples, abrasive arguments were tied to a weakening of certain aspects of immune response.

Dr. Janice Kiecolt-Glaser, PhD of OSU’s new Institute for Behavioral Medicine Research who was involved in both studies, says that the findings from those headed toward golden anniversaries were more unexpected than the findings from the newlyweds. “You might expect that arguments would have less impact on older couples because they’ve gone through these disagreements many times before and have learned to deal with them,” says Kiecolt-Glaser. “But that’s not the case.”

Besides raised stress hormone levels, the older couples with weaker immune measures also described their usual marital disagreements as more negative.

In the study of newlyweds, researchers concluded that one key to lowering the stress during a couple’s arguments is to concentrate on the issues at hand and reduce the amount of negative responses that result. The style of the fighting is most important. “The sarcasm, name-calling and back-biting are the problems,” says Dr. Ronald Glaser, PhD, another researcher involved in the OSU study.

Of particular interest was the continued elevated stress hormone levels of the women having husbands who withdrew from the arguments. “We’re probably seeing the results of the women thinking about and reliving the argument throughout the day,” Kiecolt-Glaser says.

According to the researchers, while changes in immune response were seen in both newlywed and older couples, the effects may have greater consequences in older people as their immune systems are already waning. “Older adults have greater rates of illness and death due to infectious diseases compared to younger people,” Kiecolt-Glaser says. “Additional stress, such as from marital arguments, may put them at greater risk.”

Monday, January 19, 2009

Divorce and Illness

from The Daily News

Sunday, January 18th 2009, 11:34 PM

Her split from Dr. Richard Batista has been painful enough, dragging on for four years, and mostly, she’s been worried about the children.

But just as their trial was about to begin, the surgeon upped the ante. His lawyer announced that Dr. Batista had donated a kidney to her, and now he wants it back - or its supposed $1.5 million value"


Sometimes love can become a Steven King novel - you know the ones, about a killer car or a killer prom queen or a killer caretaker at a snowed-in, isolated moutain retreat.

How does this happen? How does a couple go from "I do" to "Gimme my kidney back?" From "love and honor" to "wound and maim?" Demanding a kidney refund is so much more mutilating and vampirish than taking back the diamond engagement ring. It's hateful.

And how does love become hate? Does that happen when such a critical mass of disappointment has accumulated that the pile starts to fester and breed hate bacteria? Does it happen when two people have been so blinded by their own illusions for rescue that they enshroud their partner with expectations no mortal could meet? Does it happen in the day to day, inch by inch annoyances that eventually crescendo into an unscalable wall of misery? Does a moment arrive when all murmurings of tenderness disappear leaving only a banshee shriek of hate?

How can you take back the kidney you once gave as some form of loving sacrifice?

And what role does the illlness that required the kidney in the first place play? (Dawn has supposedly had 3 kidney transplants and a double mastectomy). I can imagine illness as an amplifier. Whatever strains existed in this couple's relationship perhaps got overloaded by the extra burdens illness brings. Many of us have struggled with this.

But how many of us have demanded a body part be returned?

And finally, a woman's body is never, never to be used as a field of negotiation. This is the fundamental women's health right.

Monday, August 25, 2008

Chronic Pain & Couples: Learning to Find Each Other in the Shadows

coryphella on flickr

For couples, when illness lingers and turns our path towards a dark unknown, we start to become shadows to each other.

The present is too often a fragmented reflection of what used to be. The invitations we can't accept, the activities we can't do, the conversations we don't want to be part of are reminders of a brighter time in our life that now stands in the shadow of illness. When I was living with uncontrolled pain, my days were consumed in attempts to stay just a few inches ahead of the next spike. A sunny morning, the aroma of coffee, or a good book, had no meaning. Cheery news from a friend was almost unbearable.

As I moved farther away from life, into the shadows of illness, I drifted to a realm where Richard could not follow. He could watch and reach out towards me, but he could not enter. He didn't have the right ticket, and I had no return.

We started becoming shadows to each other, our vitality dimmed by all those sweet things we could no longer hold onto. When he looked at my face he saw the gray mask of illness. My eyes no longer focused on the world and only offered him flashes of someone he once knew. Every time he left the house to go to work or the gym or have dinner with a friend, I felt relief at his remaining connected to normalcy; but each venture broadened the shadowland that was growing between us.

I think had we not had such a long history together, and had we not already learned to face one another and speak the hardest truths, we would have lost each other. The shadows would have eventually rendered us unrecognizable.

How did we learn to keep finding each other?

We never learned to dispel the shadows, but we found ways of creating new venues where we could see each other more clearly. Places that had no ties to our earlier times and were therefore immune to a gathering of shadows.

We learned to sit in silence together. Our old life was one of activity. Now, in silence, we could slow down enough to feel something essential for each other, something that endured.

We discovered the small things that gave us comfort. Our old life was about big things -- vacations, climbing mountains, work achievements. Now Richard stroked my hair and read aloud Jane Austin or Tolkien. When I prepared the colorless, bland foods I could eat, I offered him some. When he was at work, he texted me to let me know he was thinking of me and hoping I was having an ok day. I texted him to let him know when I had good moments. On Sunday nights at 9:00pm, no matter how uncomfortable I was, we watched the Sopranos.

We spoke about our fears of losing each other. And each time we did, naming the fear diminshed it.

We learned to build bridges to each other, above the shadows.

Saturday, January 19, 2008

What Do You Do When the Caregiver Gets Sick?

When I was at one of many low points with my chronic pain condition, while my doctors remained mystified, and I was still chasing after every new wonder treatment I read about on dubious web sites, Richard got sick. My sweetie, my caretaker, the only one I let inside my black hole of pain and fear, started sniffling and coughing.

I was in a very precarious state. I had been sick long enough to finally know that this nightmare was not a random spasm that would just unwind and disappear. But I hadn't yet found the right balance of care and was still cobbling together a patchwork of treatments that weren't very coherent, and were, at times, contradictory. On the alternative front, my chiropractor instructed me not to bend forward, while my physical therapist prescribed a routine that included toe touches. My homeopath warned me that my acupuncture might be canceling out the effect of her remedies. My acupuncturist scoffed at the idea of anyone seeing a homeopath. My neurologist, gastroenterologist, gynecologist, and uro-gynecologist, had resigned their place on my treatment team with the good news that they could find nothing wrong. All this left me flailing around for an anchor point. Richard was it.

Day by day, his nose got runnier, his eyes blearier, and his cough more pneumonic. This wasn't our contract. I was the sick one, and he was my hero. My pain claimed all the illness space. His cold was puny, a two-bit player in a high stakes game. He took antihistamines and tried to ignore any further leakage. Whenever I asked him how he was feeling, he would wipe his nose and wheeze, "OK."

But there was one aspect of his cold that we couldn't ignore. The contagion. The possibility of infusing his cold into my already mangled nervous and immune systems was untenable, for both of us. The only protection was to remain separated by at least two feet of air or a closed door.

We decided to try this approach. However, after a few days, I only felt more alone in my misery, and Richard felt bereft. He was unable to perform his role of comforter, which was his only shield against his sense of his own helplessness to make me better.

We kept this segregation going for a week -- speaking to each other across thresholds, sitting on opposite sides of the couch. Richard gargled salt water and popped vitamin C and echinacea, as I watched from a distance. The loneliness we each felt was brutal, and we knew we couldn't endure it much longer.

Then, Richard's brother telephoned. He listened as Richard explained our contagion vs comfort conundrum. Mark sagely said, "Get in there and hug her. The absence of touch is doing more harm than a two week cold could ever do."

Richard crossed the threshold and cradled me in his arms. We both felt like babes who had been reunited with the good mother.

I never came down with a cold.

Sunday, October 21, 2007

Chronic Illness: No One's Talking About it

From an October 11 article in the Atlanta Journal-Constitution:

Americans are more reluctant to discuss managing a chronic illness with family or friends than to talk about politics or religion or even extra-marital affairs, according to a survey of more than 1,000 adults conducted by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. And, btw, by 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include: They think the person has the situation under control (66 percent); they are not a health care professional (31 percent); they don't want to seem like a nag (31 percent) or rude (29 percent); they don't believe the person would listen to them (27 percent); or they didn't think the matter was that important (15 percent).

The bit that caught my attentions was this:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health. However men have an easier time offering health advice to their spouse (28 percent) than women (19 percent).

This means that even among committed couples dealing with chronic illness, there's not a whole lot of talking happening about the topic. This deeply concerns me. Chronic illness consumes -- it can consume time, energy, passion, attention, empathy, altruism, and even love. And it's voracity can become even more potent when there's nothing between it and it's victim but empty silence. How lonely!

And any significant silence, any unnamed pain, or any undiscussable topic does not stay encapsulated in a neat corner of the relationship. It infiltrates. It seeps into other territories in the relationship, taking up more and more space until silence turns into habit. Not discussing a fearsome issue -- be it illness, sex, infidelity, money, family -- does not diminish its impact. On the contrary. The tension around the taboo subject just gets expressed elsewhere - through distance or eruptions.

Why aren't couples talking about the chronic illness in their lives? Is it denial about the illness? Is it protection of the partner's feelings? Is it avoidance of one's own feelings? Is it disgust over the physicality of some of the symptoms? Is it rage at the sick partner for his/her limitations, or at the well partner for his/her health? And why is it easier for men than for women to speak? Or is it harder for men to hear their female partner's words than it is for women to hear their male partner's?

Whatever the reasons, illness is just too hard to carry alone. Please, may we all find a way to find the words that penetrate the silence.

Monday, October 8, 2007

Chronic Illness Statistics: We Are Not Alone

Here are some surprising stats about chronic illness I recently found on a very interesting website, The Daily Headache, about living with and managing migraines and chronic headaches (written by Kerrie Smyres):

  • Nearly 1 in 2 Americans (133 million) has a chronic condition
  • 96% of them live with an illness that is invisible. These people do not use a cane or any device and may look perfectly healthy.
  • Sixty percent are between the ages of 18 and 64
  • The divorce rate among the chronically ill is over 75%
  • Depression is 15-20% higher for the chronically ill than for the average person
  • Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides and more than 50% of these suicidal patients were under 35 years of age
We are not alone. And we have a lot to learn from each other about living with illness. In fact, there is a National Invisible Chronic Illness Awareness week annually in September to bring together and educate people with chronic illness and the people who care about them.