by Heather Grace IPJ Staff Writer
A few weeks ago, some friends and I were discussing how so many people we knew had a really rough time dealing with their chronic pain. Not just because pain sucks, and takes a lot out of you, both physically and emotionally. No, sadly, that’s not the worst part. We were discussing the awful, unspoken trauma we experience when loved ones—the people that we believed would be there for us no matter what, 100%—had left when we needed their support most. If you’ve walked down the dark and uncertain path into chronic pain, you know what I am talking about… People leave.
No matter how wonderful your friends and family are, they may not be there through the worst of your pain. If it just happened to people with chronic pain that would be bad enough. But, it almost doesn’t matter what the disease is. People with serious illnesses, no matter the diagnosis, often find themselves abandoned. Critically ill people are deserted by the same loved ones who they thought would always be by their side. The question we were discussing is why?
Why Do They Leave?
One of the people involved in the discussion was the husband and caregiver of a good friend of mine, who was bedridden due to the severity of her Reflex Sympathetic Dystrophy (RSD). Though they didn’t have an easy time of it, and he admits he thought about leaving at times, he stayed by her side. She was one of the lucky ones. He marveled at how many people walk away, how they’re able to leave when someone is so sick, they might die.
“It’s as if those vows are forgotten,” I said. “I think it’s easy to say you will be there in good times and bad, in sickness and health, but do most people really mean that?”
“I don’t know. A good friend of ours dealt with cancer alone—her husband left. I’m not sure why,” John said. “Maybe it’s in our nature… you know, just like animals who carry on, leaving behind a member of the herd that is weak or sick for their own safety.”
I remembered reading about that, too. In the wild, animals instinctively desert those who are attracting predators. If one animal in the herd is dying, and the entire group was to slow down for that one animal, they’d all be in danger. So, they keep moving. Even domesticated animals have enough “wild” in them to follow their instincts about death. Cats are well-known to sneak off on their own when it’s their time, much to the dismay of their human family members.
Though it is common in the wild, not all animals turn on their kin or run off when they’re near death. Elephants have a very distinct death ritual. They remain by their ill family member’s side to the very end. Some wail sadly, running their trunks over the sick one, with tears streaming down their faces.
Could It Be Human Nature?
I had to consider whether John’s observation was, perhaps, an explanation for why this happens time and again. We weren’t wild animals obviously, but was all of this rooted in human nature? I wanted to believe we were at least as advanced as the elephants. Sure, I’d read the studies—seen how the data on attraction and how it’s wrapped up in our human evolution. I knew that what we find attractive is a complex mixture of biology, cultural norms and beliefs, our upbringing, and personal choice.
I could even buy that in some respects, we are no different than animals who unconsciously seek out a sound mate, in order to ensure the survival of the species. Let’s face it, even men that don’t wish to have children still find a woman most attractive when she is of child-bearing age and has a shapely figure, including ample breasts. Is it possible that somewhere in our nature, we are wired to leave the sick mate, and attempt to seek out a healthy one? That was where I drew the line, emotionally. I just couldn’t accept that human nature would drive anyone to leave their sick mate—to discard them in favor of a newer, less worn-out model.
My Own Experience…
Merely talking about the “why” of this phenomenon had opened a deep wound for me. I still mourn the loss of some of the people who left my side when my pain was worst, never to return. I’d lost so much then: first my job, then my house, then just about everything else. Because I’d been through the ringer as a young girl, I’d learned not to count on too many people. I was a survivor; strong enough to handle anything that came my way. I reveled in the knowledge that I worked hard enough and was resourceful enough, that I would always land on my feet. It was my unofficial motto–the thing I said to myself when times were tough and I was worried.
When it was clear I could no longer work, I crumpled in a heap of despair. The rug was pulled out from under me in a way I’d never imagined possible. If I couldn’t count on myself, what would I do? The unknown was dark and looming, growing by the minute, enveloping me a little more, each day. I tried to keep it together, but how do you do that, when you aren’t sure you will ever work again? When your support is dwindling even quicker than your money?
I’d lived with chronic pain for some time—then it became constant and severe, every minute, every day. By the time I developed intractable pain, my lack of support was excruciating. I felt like I’d happened upon a desert wasteland. There was no one left that I could truly rely on. The few friends I had left checked in on me by phone every month or so, but I became afraid to call them. Would they leave me, too?
I’m not going to pretend that being a friend to me at that time was the easiest request. I was asking the people I loved most to be there with me through a shit storm of emotions. Sad, scared, angry, anxious… running through every negative emotion you could think of, in rapid succession. Sure, it was hard. It sucked. But, dammit, I really needed a friend. There were so many times when I just wanted to be able to call someone on the phone, and know that one of them—just one—would care enough to pick up the phone and just be there for me. They didn’t need to solve anything, just listen & maybe say a kind word or two. I’d always been a good listener, was it really too much to ask someone to do that for me?
Is It “The Norm?”
I’m not sure how I found my way to a good doctor and the wonderful support I have now, but it must’ve been divine intervention. After I adjusted to life with RSD and Central Pain Syndrome, I found this whole world of people who had learned—the hard way—that people aren’t always there when the chips are down. It’s an all too common phenomenon; something nearly everyone with serious chronic pain has experienced. We almost expect it to happen to people with pain, once things get really tough.
Everyone I’d talked to about this issue had felt the same way I did; each thought they had unconditional love all around them. However, like me they had each lost several people close to them. And without fail, each of them sadly told me they had not gotten all of those loved ones back, if/when things got better. (Even when people returned, the relationship was typically forever changed. It’s not easy to mend a broken relationship when you know your loved one may once again leave if things are ever that difficult again.) Is this sort of abandonment the norm? It was tough for me to consider, probably because I’d had a rough road, personally.
Taking a step back from the worst of it, I’ve also wondered if it was somewhat of a chicken/egg problem. Did I pull away from them, or was I pushed? Was it a little of both? It’s hard to say, but having gone through so much alone, I now know: I could never do that to someone, no matter how many times they cried on my shoulder.
Chronically Ill Women Fare Worse
Looking at the loss of family due to chronic illness, the statistics are worst for women. Seattle oncologist Dr. Marc Chamberlain noticed an alarming pattern when comparing male and female patients with brain tumors. His male patients typically received the much-needed support from their wives, while a number of his female patients were going it alone, ending up separated or divorced soon after diagnosis.
He decided to do a formal study, working with four other physicians. They studied 515 patients who received diagnoses of brain tumors or Multiple Sclerosis from 2001-2006. The women were seven times as likely to become separated or divorced as the men, according to the study, published in the journal Cancer (November, 2009). Divorce was most common about six months after diagnosis, and people who were married longer seemed to fare better, overall.
While the causes of the divorces in this study are not known, Dr. Chamberlain speculated: “There clearly is an emotional attachment women have to spouse, family and home that in times of stress causes women to hunker down and deal with it, while men may want to flee,” he said.
Though chronically ill women fare worse, anyone who’s chronically ill can suffer the loss of their mate. Marriages of both men and women who are chronically ill are in jeopardy, according to a National Health Interview Survey. The divorce rate among the chronically ill is over 75%.
Why is it so hard for people to stay with someone they love in their time of need?
Yes, the marriage vows should mean something. But, we all realize that being sick is a huge loss to our partners, and that our illness changes the dynamics of the relationship. Being seriously ill impairs our ability to do the things we used to do as a couple. Feelings like guilt, anger and the accompanying miscommunication can further impact a relationship, making it rocky.
“When you lose your social and sexual partner as a result of a disability, it has a huge impact.” Dr. Sandra Weintraub, Director of an Alzheimer’s clinic at Northwestern University, said: “There’s a whole psychological layer. When you get married, it’s not to be somebody’s nurse, and suddenly you are somebody’s nurse.”
Financial problems only make the situation more difficult. When one of the household’s incomes is lost, the cost of healthcare rises, further increasing the tension at home.
The deck is stacked against us, but couples can and do survive chronic illness. What can you do to prevent the breakdown of your marriage or family? What sets couples who stay together apart from those who don’t? The key appears to be ongoing support for all involved.
In the book Families, Illness & Disability: An Integrative Treatment Model by John S. Rolland, M.D., the author, a psychiatrist, admits it was difficult to cope with his wife’s illness while simultaneously caring for his aging mother. “I became aware of how little my own professional discipline seemed to have to offer people in my family’s predicament.” He says, “Any family facing illness and disability should routinely be provided the opportunity for a family consultation around the time of the onset of the condition, as well as continued access to such services over the course of the disorder.
The research of Dr. Chamberlain and his associates can also shed some light on key areas of focus. His team feels that medical professionals who treat the chronically ill should consider including social workers and family therapists as part of a patient’s healthcare team, particularly for younger couples. They found that patients who lose spousal support after a cancer diagnosis are less likely to complete therapy or try new treatments. They also have higher rates of hospitalization and lower rates of hospice care, despite the fact that most people who are terminally ill prefer hospice care to hospitalization.
“It has an enormous impact,” Dr. Chamberlain said. “We know from other studies of patients with cancer that social support is so extremely important.”
Support is important for us all, no matter the diagnosis. If you don’t have the support you need from friends and family, please reach out to the diverse online community.
Sites To Increase Support/Coping:
- Chronic Babe’s Coping Tools: http://www.chronicbabe.com/help-desk/cat/71/
- Heroes of Healing: http://heroesofhealing.com.
Got suggestions for other great support sites? Tell us in the COMMENTS section, below!
*NOTE: This article first appeared at ChronicBabe.com in 11/2011, thanks to Editrix Jenni Prokopy. Check out ChronicBabe.com… You’ll love it, just like I do!
About The Author
Heather Grace is an Intractable Pain Sufferer, Writer & Advocate. She’s Co-Director of the 501c3 nonprofit Intractable Pain Patients United (http://www.ippu.info), has been a Speaker/Conference Planner at For Grace’s (http://www.forgrace.org) annual Women in Pain Conference and is a Pain Ambassador for the U.S. Pain Foundation (http://uspainfoundation.org).
- Beuermann-King, Beverly. National Invisible Chronic Illness Awareness Week. Work Smart, Live Smart: Stress and Wellness Tips Blog. September 12, 2011. Retrieved from: http://stressandwellnesstips.blogspot.com/2011/09/national-invisible-chronic-illness.html
- Glantz & Chamberlain, et al. Gender Disparity in the Rate of Partner Abandonment in Patients With Serious Medical Illness. Cancer, Volume 115, Issue 22. Published online: July 30,2009. Retrieved from: http://onlinelibrary.wiley.com/doi/10.1002/cncr.24577/pdf.
- Holding, Cathy. The Science of Magnetism. The Independent. September 12, 2008. Retrieved from http://www.independent.co.uk/life-style/love-sex/attraction/the-science-of-magnetism-926693.html.
- Kilborn, Peter T. Disabled Spouses Are Increasingly Forced to Go It Alone. New York Times Health. May 31, 1999. Retrieved from http://www.nytimes.com/1999/05/31/us/disabled-spouses-are-increasingly-forced-to-go-it-alone.html?pagewanted=all&src=pm.
- Parker-Pope, Tara. Divorce Risk Higher When Wife Gets Sick. New York Times Blog. November 12, 2009. Retrieved from http://well.blogs.nytimes.com/2009/11/12/men-more-likely-to-leave-spouse-with-cancer.
- Rolland, John S. Families, Illness & Disability: An Integrative Treatment Model. Basic Books: New York, 1994. Retrieved from http://books.google.com/books?id=i2qwRDemnwcC&printsec=frontcover&source=gbs_atb#v=onepage&q&f=false.
- YourDictionary. Why Do Animals Hide When They Are Dying? (n.d.). Retrieved October 7th, 2011 from http://answers.yourdictionary.com/answers/animal-life/animals-hide-when-dying.html.
© 2011-2014 Intractable Pain Journal & Heather Grace. All rights reserved.