In Sickness As In Health: helping couples cope with illness

The Patients For A Moment blog post collection is up at Duncan Cross

2013-05-20T09:29:00.001-07:00

Duncan chose a very interesting theme - What do you do to recharge? The posts are insightful and worth having a read.

Angelina Jolie's Choice

2013-05-20T09:24:00.003-07:00

Many of you by now have heard about Angelina Jolie's choice to have a double mastectomy. This is such a personal decision that I dare not comment on anything other than her ability to go through whatever it took to come to her decision. I'm sure it took a lot.

One thing I do know that it took, as she noted in her New York times Op Ed, is the support of her partner.

Not many, if any, commentators focused on the couples part of her story. But consider the discussions they had, the times they held each other and cried, what they laughed about, and what kind of future they are imagining (because even with this surgery, it's not over).

She wrote:
"I am fortunate to have a partner, Brad Pitt, who is so loving and supportive. So to anyone who has a wife or girlfriend going through this, know that you are a very important part of the transition. Brad was at the Pink Lotus Breast Center, where I was treated, for every minute of the surgeries. We managed to find moments to laugh together. We knew this was the right thing to do for our family and that it would bring us closer. And it has."

While essential, it's not just about the partner's love and support. It's about his carrying the load with her. Entering into it. Feeling empathy, and sympathy. Understanding when to discuss, when to lie in each other's arms, and when to share what this means to him. It's about holding hands and jumping off the platform together into a future you never envisioned when you made your commitment to each other.

A friend sent me this Zen teaching. This is what I wish for this couple, and all of us:

Welcome everything.

Push away nothing.

Bring your whole self to the experience.

Don't wait.

Find a place of rest in the middle of things.

Cultivate don't-know mind.

Recharging

2013-05-07T12:11:00.000-07:00

Both Richard and I are in the patient position right now. He is recovering from open heart surgery that replaced and repaired heart valves. And I am on my familiar pain roller coaster, which of course, is reactive to Richard's state. It's as if we're hard wired into each others nervous systems. When he has heart flutters, I have pain poundings. When my pain is rising, he develops the empathy blues, which is not healing for his heart.

In the past, when I was the sole patient, if I sank into the pit of doom, I could count on Richard to shine the light of hope. His commitment to my improvement would infuse me with something like hope. His presence and kindness, replenished me. And when I felt better, emotionally and physically, he grew lighter. That was our pattern.

Now we are on new turf. Both of us patients. He can't tolerate too much doom, and I slide down the slick walls of the pit too easily when I don't hear his voice calling to me.

As unfamiliar and disturbing as this disruption is, it is also a call to action. I confess, with embarrassment, I have gotten too comfortable with the patient position, too self protective. This inversion of roles is actually recharging me -- inviting me to step more deeply into my own capabilities and into taking care of the person I love most.

I spent 14 hours a day by his side when he was hospitalized for 10 days. Now that he's home, I do the shopping, the laundry, and take out the garbage. Little things - but markers of engagement with the world.

My biggest surprise is that as I do chores for Richard's benefit, and do them with love, I grow stronger, and I have a wider field on which to show my love.

btw -- I don't recommend this route to anyone as a path to recharging and becoming bigger than you think you were. But it was given to me and I'm liking the results.

Two Other Books to Recommend

2013-04-28T07:41:00.004-07:00

I highly recommend these two books. They will create openings for you:

The Last Best Cure, by Donna Jackson Nakazawa

Here's a bit about the book:

One day Donna Jackson Nakazawa found herself lying on the floor to recover from climbing the stairs. That’s when it hit her. She was managing the symptoms of the autoimmune disorders that had plagued her for a decade, but she had lost her joy. For years, she’d been living on what she’d come to think of as the “Pain Channel.” She wanted to tune into the “Life Channel” instead. As a wife and mother of two, she was determined to get her life back. As a science journalist, she was compelled to understand why her brain might be her last best cure.

How To Be A Friend To A Friend Who's Sick, by Letty Cottin Pogrebin

Here's praise for her book:

"How to be a Friend to a Friend Who's Sick gives us excellent tools and moving experiences to love and nurture the sick and dying. It urges and enables us to move towards those in need rather than fleeing in terror or despair. it is a handbook of kindness and care and will help patients and healers, which is ultimately all of us."
-- Eve Ensler, playwright and activist

Book Recommendation: In the Kingdom of the Sick by Laurie Edwards

2013-04-15T11:13:00.001-07:00

I think you will get a lot from reading Laurie's book -- as I did. Here's a quote about the book:

"...People with chronic illness owe much to advances in medical technology, but they also are aware both of the limits of science and of society's throwback belief--subtle or blatant--that people who are sick have weaker character than those who are well. Through research and patient narratives, Edwards looks at the origins of these attitudes, and from the advent of modern vaccinations through present day, she traces the experience of being a patient with chronic illness through such cultural influences as the disability rights movement, the women's health movement, and the rise of the Internet and health 2.0 technologies..."

Critics call In the Kingdom of the Sick "surprising, revealing, and beautifully written," and a "probing, clear-thinking examination of the new medical crisis on our hands: chronic illness."

When Patient Becomes Caregiver

2013-04-15T10:54:00.001-07:00

This is what I feel like shouting:

"Hey world, and all those omnipotent beings who flick the switches, I'm the one who is supposed to be the patient in this version of life. You slammed me 12 years ago with a chronic pain condition and I've put in all this time coping, seeking, hoping, losing, and gaining.

I count on Richard to be well. More than well -- to be strong and filter the world for me and do the grocery shopping. Now you go and slam him with open heart surgery and valve replacement. Jeez. Couldn't you have started with something smaller - like a torn meniscus.

And, of course, you tricky devil, the stress of this experience is like a match thrown on the gasoline of my pain. So there he lay in his hospital bed and there I lay, on the couch in the hospital room, curled up with an ice pack, trying to do my best to be attentive.

But I do thank you for making his illness experience such a good one, given the parameters. He, thank you, is doing great. Home, now walking, almost pain-free, optimistic, and even able to put dishes into the dishwasher. HIs doctors are happy, which means we can all be happy.

But I have to drive him places. And make real dinner and lunch and breakfast meals for him. Which means I have to go grocery shopping. Don't get me wrong, a big part of me is delighted to be able to care for him and give back a bit of what he's done for me over the years. And it feels great to help him, because I love him and would do anything I could for him.

But jeez, really....open heart surgery."

Dumb Things Practitioners Have Said

2013-03-07T09:10:00.001-08:00

I have heard terrible stories about dumb things practitioners have said to patients. For me, the worst ones are the ones said to women who are suffering by practitioners who don't know what to do, so they say variations of: "It's in your head."

I hate this for two reasons One, it's paternalistic and dismissive. Two, everything is in your head. Your head is connected to your cancer, arthritis, ulcer, aortic artery, and your nameless pain. And, if you accept the mind body connection and the placebo effect as real, then the head is an integral part of it all.

I have never actually had this happen to me, even though my pain was mysterious and undiagnosed for many years.

The dumbest thing that was said to me was a doctor telling my husband to wait in the waiting room after I had asked if he could join us.

When you're a couple and one of you has pain, it's four hands that are carrying it, and two minds that are bearing it. My husband's presence in the doctor's office not only gives him information, but gives us both a way to share in whatever is to come; and that makes it all a little bit lighter.

For the doctor, I was pain, not a person. And he was treating pain, with chemicals.

I insisted Richard join us. And what could the doctor do but acquiesce.

But it shouldn't have been acquiescence. It should have been recognition that Richard and I are in this together and are each other's ultimate resources when pain puts the lights out.

What dumb things have practitioners said to you and your partner?

What Words of Wisdom Have Helped You?

2013-02-25T08:57:00.002-08:00

I was just skimming through our book IN SICKNESS AS IN HEALTH, and the final chapter contains words of wisdom from our interviewees. Some of them take my breath away.

Here are a couple of my favorites:

"Think like a person who is going to be around."
"You can have wholeness without recovery."

And here's one my primary care doctor said to me during some dark times that I held onto like it was my blankie:

"The body heals. That's the only thing it knows how to do."

What are some of the most useful or moving words of wisdom or pieces of advice you've gotten, from any source?

How Important is it to Research Your Condition?

2013-02-12T06:37:00.001-08:00

How important is it for you to know as much as you can about your condition before you even enter the doctor's office?

I used to think it was essential to show up with a folder full of JAMA articles and research papers from people with Johns Hopkins' pedigrees. Richard, my partner, and I would divide up search terms and print reams of articles. I used to think this made me credible and more likely to assist my doctor in naming and curing my condition. I now know doctors mostly find it annoying. That's only partly because some want to be the expert in the room; most often they get annoyed because for each study, there are a dozen flaws in the research methodology, and other studies with opposite findings.

Now I find that while it's useful to research my condition, it's even more important to find great doctors and ask them great questions.

Several years ago, I had a pain in my left knee that wouldn't go away no matter how hard I ignored it. Finally I went to see an orthopedist. She recommended an X-ray and an MRI to see if anything were broken or torn. I was ready to sign on the dotted lines when Richard, who had accompanied me to the appointment, asked, "What if we just rest the knee, ice it, take ibuprofen and see what happens? Will that do any harm?" The doctor replied that this approach would do no harm and might resolve the issue. I asked her why she didn't recommend that in the first place. She said, "I'm an orthopedist. This is how I work."

It's all about the questions (and about bringing your partner or a friend with you to remember to ask them). Here are some of the basics:

What's the diagnosis and why do you think so?
What else might it be?
What diagnostic tests should we do? What will they show and not show? What are the risks?
What if we wait and watch?
What treatment options are there? What are their benefits and risks?

And here's a great one a friend who accompanied us to a consultation with a surgeon asked:

If there were a surgeon with as much intelligence and experience as you sitting in an exam room somewhere else in the country, what might he or she say or recommend that would be different from what you have just told us?

What questions have you found it helpful to ask your doctors or practitioners?

When the Ill Partner Has to Become the Caretaker

2013-02-11T09:18:00.000-08:00

For over ten years I have been the sick one. The one with a pain condition that is sometimes so quiet, I think it has just crept away. But then it slides back with a build up of pinches and pulls; or it just steps right in with an hard slam to the gut.

I'm the one who is at the center of the life we've created around pain. I get comforted. I get spared the onerous household tasks when pain is on deck.

We know how to live this way.

Now, the tables have turned; the arrow is pointing in Richard's direction. Richard is going to get heart surgery. We've known this was coming, any time between now and five years from now. We just didn't think now really meant now.

My pain has no meaning in this new terrain. In fact, my pain is a stressor to Richard and needs to be kept quiet, on a back shelf in the closet. And if I have to be somewhat stuporous and slurry tongued to keep pain away, so be it.

The tables have turned and fallen right over and landed on their bottoms.

Richard doesn't really know how to let himself be taken care of. And I'm not sure I really know how to be strong, the way I used to be in the before time.

So we're going back to the basics -- talking and holding. I ask him questions. "How do you feel?" "What do you want?" "What will happen?" "How can I help?" And when the talking brings us too close to an edge, we just link arms, hold hands, or hug until the tremor subsides.

Have you been in the situation where the well partner became ill, for a while, and you had to invert your relationship, with the ill partner becoming the primary caretaker? What helped you both?

Carnival of blog posts about patient experiences with renewal is up at Diabetes Mine

2013-01-24T09:42:00.004-08:00

Diabetes Mine hosted this month's collection of Patients For A Moment (PFAM) blog posts. The theme was renewal. They are a great collection and worth reading.

Does Illness Breaks Down Communication Walls?

2013-01-09T19:30:00.000-08:00

Here is a story from an article in NY Magazine by Meaghan Winter that is largely about how weight can change relationships. But the final vignette in the series is really about how illness breaks through the trivial and can accelerate the deeper conversations that couples who aren't living will illness may take decades to get to.

I think those of us who do live with illness as part of our relationships have known what it's like to be too exhausted or consumed to be able to squander communication energy on the easy (and delightful) irrelevancies like taking out the garbage and refilling the ice cube trays. We have to quickly get to talking about how we are feeling (both the well and ill partner), what matters to us in the moment, what we feel capable of doing, and what are hopes and fears are.

Here is the story:

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Soon after Kyle and Alison became fast friends, he began losing weight and suffering flu-like symptoms. They started dating in their late twenties. One month later, Kyle, already “damn near gaunt,” was diagnosed with cancer.

Even as Kyle underwent chemotherapy, he kept working as a social media strategist and “tried very hard to project independence.” He had only recently moved out of his parents’ home and “didn’t want family doting.” Alison’s care allowed him his adulthood: “I tried to help him keep things as normal as possible,” she says.

Chemo so weakened Kyle that even picking a movie wore him out. Alison made their plans, and they often “restricted their radius to the neighborhood” because he was tired. Despite his illness, she didn’t consider leaving the burgeoning relationship. “I just wanted to hang out with him,” she says. Because Kyle’s illness immediately plunged them into “intensity,” “once in a while” she’d wonder, “Who’s he going to be in the future, my friend, my boyfriend, fiancé?”

Now that Kyle is cancer-free and they’re living together, they’re learning later than usual to negotiate “little New York couple things you take for granted,” like going out separately. Alison says that they “broke down the walls under a vastly different peril” means they can “broach uncomfortable topics” like how they’re feeling about themselves “without fear.” He adds, “It doesn’t mean it’s not awkward sometimes … But it never feels judgmental.”

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Do you have your own story about illness and communication. I'd like to hear it.

My New Years Resolution: To Complain More

2013-01-06T09:09:00.000-08:00

Complaining has a bad rap. It's often considered a first degree relation to whining, which dictionary.com defines as: to snivel or complain in a peevish, self-pitying way. That's four derogative descriptors in one definition.

The definition given to complain includes: expressing dissatisfaction, pain, censure resentment; to find fault. Slightly more benign, but still pretty unflattering.

What if instead of complain, we used the term share, or repair, or even renew.

When you have a chronic illness you can spend a lot of time and energy handling your care regimen, your exhaustion, and your pain. On top of that, you need to manage your roster of daily responsibilities and chores, and also produce the emotional steam needed to stay just six inches ahead of your illness so you can function with dignity and benevolence.

Sometimes complaining serves as the necessary release valve so you don't combust. One or two gripes expressed out loud can help you renew flagging energy. Energy that had served to contain distress can be released and redirected toward fortitude.

I have found that saying, "I can't stand this pain another minute," helps me to stand it for a lot longer. And after I say that, if Richard, my partner, holds my hand and says, "I know," we can both stand it together.

Sometimes complaining is connecting.

When someone asks you, "How are you?" instead of answering with the expected, perfunctory, "OK," sometimes saying, "Not so good today," or "I'm actually having a bad day," is honesty. You're not deflecting the asker with a token response. And if you then follow up your answer with, "I really appreciate your asking," you have made a genuine connection that will hopefully have more meaning for both parties.

I'm not suggesting you do this with your Starbucks barista or Olive Garden waitperson. But why not with your friend, colleague, or cousin. And certainly with your partner.

In fact trying to keep your state a secret from your partner by not complaining is misplaced kindness. It cheats both of you of a chance to connect -- the ill partner doesn't get empathy and the well partner doesn't get a chance to show understanding. And besides, it doesn't work.

When you don't complain and try to hide your real state from your partner, you fail. Something leaks out that your partner picks up on. If you don't share it directly (share being the new term for complain), misconceptions and misinterpretations result. Your partner may think he did something wrong or that you're worse off than you actually are or that you're just being cranky.

So let's reframe complain. Complain is share and repair and renew. It may still be peevish to whine, but it's authentic to complain.

Caregiver Holiday Blues

2012-12-21T12:02:00.001-08:00

We may naturally think of holidays as more complicated for those who have a chronic condition or illness. But how often do we think about what holidays are like for the partners who so often act as caretakers for their ill mates?

One woman I spoke with recently, who has been the primary caregiver for her husband who has multiple sclerosis, felt it her duty to make sure the holidays were as celebratory and seamless as possible for him. She said that he suffered, so it was up to her to bring some holiday joy into his life. She spent days, and nights, baking, cooking, cleaning, organizing small groups of friends and relatives to visit in clusters that wouldn't tire her husband out too much. She felt obligated to paste the mask of holiday cheer over her exhausted face, and keep it there.

Another caregiving partner I spoke with felt that he did double, if not triple duty all year long - caring for his wife, working full time, and providing much of the care for their children. Holidays were his time for a break. He intended to ask friends and relatives to bring the holidays to his wife, while he sat in his arm chair, watched sports, and napped.

These examples are two ends of a spectrum. I think the connective thread in this spectrum is that caregivers need consideration and permission to take care of themselves, all year long, and especially during the holidays when expectations of cheerfulness can become oppressive for those of us who live with illness in our relationship.

This is not to say that you shouldn't enjoy whatever holiday spirit speaks to you. And part of that spirit may include doing some special things for your partner. But the equation should flow in two directions.

The ill partner can also do what he can to bring a little specialness into the holidays for his mate. And that can be something as simple and as powerful as words. The ill partner can tell his beloved that she is indeed beloved and express what he appreciates about her -- and not just her caregiving, but the specialness of her essence.

Sometimes words, especially those that convey that you truly see and know your partner and love her for her goodness and her frailties, can be the best gift of all.

Childless Couples Have Higher Death Rates and Mental Illness!!??!!

2012-12-19T14:21:00.001-08:00

I hate scientific studies that don't investigate the assumptions on which they're based. They do harm. The findings slither around and get into the heads of people who treat people for the issues the research purports to understand. And the misconceptions become protocol. Here's one example.

The Journal of Epidemiology and Community Health published an article declaring a connection between childlessness and increased risk of death and mental illness.

Among the findings:

Having a child cuts the risk of early death, particularly among women.
The early death rate from circulatory disease, cancers, and accidents among childless women was four times as high as that among those who gave birth to their own child, and 50% lower among women who adopted.
Similarly, rates of death were around twice as high among men who did not become parents, either biologically or through adoption.
The prevalence of mental illness in couples who adopted kids was around half that of other parents.

What the study states but doesn't investigate is that for their research they used: "population-based health and social registers, we conducted a follow-up study of 21 276 childless couples in in vitro fertility treatment."

Do you hear the sound of "WHAT!??!" beginning to reverberate?

Might it be that couples who have been living in the infertility system for months, maybe years and have had their original life script expectations erased, have had doctors and drugs and timetables invade their intimate time, have spent gobs of money, and have had repeated cycles of devastating disappointment may be in a very different state than couples who have CHOSEN not to have children?

And let me state my assumption up front. Choosing not to have children is not dysfunctional. It's not a psychological condition. It's not an ethical/moral lapse. It's not a sign of immaturity or selfishness. It's a legitimate choice.

It may be that the researchers' findings do apply to couples who undergo infertility treatment in order to have a child.

But there is harm in assuming that all couples who don't have children are at higher risk for death and mental illness.

Happy Holidays When You're Not Feeling So Happy

2012-12-07T07:50:00.001-08:00

The holidays are so packed with contradictions. John Stewart on The Daily Show said the other night that holidays are the one time of the year when you feel compelled to get together with the people you try hard to avoid the rest of the year. They're also a time when every message around you - from stores, news, advertisements, magazines, TV - demand that you be sparkly and celebratory and spend money on others. For those of us dealing with illness and its corollaries - pain, exhaustion, distraction, medication - and for those of us who live with and love partners who have an illness, the messages of the holidays can put expectations on us that are intolerable.

So, how do you cope with the holidays? What have you learned over the years to help you spend your energy and attention in ways that don't deplete you and even give you some joy?

My approach is to set expectations as early as possible - with myself, my sweetie, and family and friends. I accept invitations in the hopes that I'll feel up to going. But I offer invitors the caveat that I may have to cancel at the last minute if my body tells me to stay home. I find that most people respond by saying, "Whatever you need is fine. Just tell me how I can help." And if they don't respond that way, I probably don't want to go to their party any way.

What do you do?

Why Did I Change the Name of This Blog?

2012-12-02T18:12:00.000-08:00

This blog is renamed: In Sickness As In Health: helping couples cope with the complexities of illness because that is the name of our book, which will be published in January 2013. I decided to make the blog and book names match. In addition, the book website, not so coincidentally has the same name.

This blog will remain a place for in depth conversation and analysis of the complexities of how illness affects the couple relationship and how couples can cope with the strains and changes illness delivers. The book website is a place to learn more about our book.

Here is a brief description of the book:

For the past several years my co-author (Roanne Weisman) and I have been working on our book, IN SICKNESS AS IN HEALTH: Helping Couples Cope With The Complexities Of Illness.

We interviewed couples living with illness and experts from many fields -- psychology, theology, hospice, medicine, nursing, rehabilitation, government, the military, and law. We met couples (and individuals) who became even stronger because of the lessons illness taught them. And we met couples for whom illness revealed the chinks regular daily life had been masking, and many were then able to repair them.

Our couples and experts have profound and practical guidance for readers who want to deepen their primary relationship and better manage adversity. They not only offer advice about topics such as communication and coping, but also on practical matters such as managing the health care system and getting your legal affairs in order. Their amazing stories and insights have value for those who are currently dealing with illness, and also for those who have good health but want to be more proactive in building a better relationship before any illness might hit.

Writing this book has been a profound and humbling and enlightening experience. We wrote it because we both lived the experience of having a severe health condition disrupt the patterns and expectations of our primary relationships. We and our partners were whiplashed by the fear and uncertainty and pain illness inserted into our lives. And there were no resources available to help us learn how to be cope, together.

We hope that listening to the voices of other couples dealing with illness and experts who help them will offer you useful guidance and a sense that you are not alone.

Thanks

2012-11-20T05:15:00.001-08:00

Like many of you I've been looking forward to and dreading Thanksgiving. Looking forward to the warmth of being in a circle of friends surrounded by a feast. And dreading the inescapable seduction of gluttony. And, if I'm being completely honest, I'm also fearful of having my pain interfere with my pleasure. I don't want to admit that -- for fear that acknowledgement will become inevitability. But the fear is there. And I will have to be prepared to make accommodation on the spot. And explain to the feasters why I'm standing or why I am wearing a heating pad as part of my wardrobe.....Sigh....

But I do want to share my list of what I am indeed thankful for. Here goes:

The medications I hate to take but am hugely grateful for.
Friends who know when I'm not doing so well and don't ask how I'm feeling but just text me: "I'm thinking of you."
Television. And On Demand, Netflix, Hulu, Tivo. Particularly Homeland and Spaced.
Crap mysteries - books and British TV shows
Dried fruit, since I'm no longer eating sugar.
The flaming red leaves on the Japanese maples in my neighborhood.
Missing my dog, who passed away five years ago.
My book (In Sickness As In Health: Helping Couples Cope with the Complexities of Illness) which is coming out in January ).
My dear family and friends.
And more than anything in the universe, my husband, Richard, whose love and selfless support keep me breathing.

What's on your list?

The PTSD of Relapse

2012-10-24T11:04:00.000-07:00

I had my first pain relapse in over a year. I have no idea what caused it. Could have been flying, insomnia, decaf coffee, a disturbing movie, a butterfly flapping its damn wings somewhere. All I knew was the pain was back, and I dropped down the shaft into the PTSD (Post Traumatic Stress Disorder) pit.

I huddled. I made frantic phone calls to doctors (none of whom returned them...sigh). I went to the dark places of forever, never, always. I clung to my heating pad like it was a life raft. I had no conception that this would ever end. The years of relief I lived between the onset of my pain condition and this current relapse disappeared. The reassurance those good years could have offered was dissolved in an instant by the first waves of pain. My rational mind went walkabout. It was just me, my heating pad, and my terror.

Except for Richard. He became my memory. He once again hoisted up the mantle of hope and draped it over my sunken spirit. He reminded me that I was in PTSD-land and that while my now was awful, it wasn't predictive of my future. His voice and sanity reached me.

I went back up a step on my meds. I unwound. I reached. I'm doing much better now.

Richard just came into my office as I was writing this and put his arm around me and chanted, "I'm so happy, I'm so happy." Me too.

How Did Your Parents Deal With Illness?

2012-10-14T09:31:00.001-07:00

How far do we travel from our parents' patterns? A question psychotherapists and their clients have been wrestling with for decades.

We can't escape the parental imprint. Some of us may not want to. But those of us who did hope to be different often find ourselves in our 40s or 50s unexpectedly leaking parental behaviors or attitudes we thought we had purged ourselves of in our 20s.

I sometimes hear myself saying to Richard, my partner, as he heads out the door for his Tae Kwon Do class, "Be careful." He has a second degree black belt and has been studying for years. He is always careful. My admonition is a spillover of my father's anxious voice warning me to be on the lookout for endless, unnamed dangers hiding in plain sight at every turn. Other times I see myself tighten up like a fist when something I thought I had control over twists in an unpredictable direction. It is not my jaw that clenches in agitation; it is my mother's jaw, on my face.

How our parents do or did illness is a powerful pattern. Did they suffer in silence, while allowing no one to offer tenderness or help? Did they submerge into illness and allow it to define who they were? Did they use illness to control and manipulate? To get attention? Did they remain engaged in living and loving? Did they learn from illness to become more fully who they were? Did they become nastier to each other? Or sweeter? And finally, did they take care of each other -- physically and emotionally?

My parents, who kept each other at a distance when well, became even more separated when ill. They went so far as to resent each other for their increasing incapacities. It was not pretty.

There were times when I was in the thick of my pain condition, that I isolated and withdrew from Richard. But more often, I allowed my pain to teach me to reach out for comfort and connection. I had to. For me, the voice of pain was more powerful than my parents' example.

Dealing with illness can be a consuming job. When you find yourself behaving in ways that don't create the kind of bridge to your partner that will help lighten the load for both of you, pause and ask yourself: "Am I playing out a pattern that doesn't really belong to me? Whose voice am I speaking with? Can I do it differently?"

How did your parents deal with illness? What did you learn to do and not to do from them?

Do You Maintain or Reduce Your Meds?

2012-10-07T06:59:00.005-07:00

I'm not even sure why I do this, but I am continually trying to reduce my pain medication.

I stabilize for a period of time, and then I try to taper. I drop a few pills and then I begin to feel tiny ripples of pain - I call them guppy ripples. At that point either I pay attention to them and go back up to the last medication level at which I was stable; or I pretend they are indigestion, try to ignore them for a week or so. Too often the guppies then turn into barracudas, and I have to increase the med dosage beyond where it was when I began to taper. Sometimes, though, I can successfully taper, and this then justifies my next attempts to cut down on meds.

Richard has learned that his voice needs to be a quiet one during these medication experiments. He reminds me of my doctor's perpetual advice to of just stay stable at the level of meds I'm on. At some point I ignore his counsel and do my thing. If (or when) I suffer the consequences, he just holds me and reminds me that I had stabiity and can have it again.

If you're the ill partner, how do you manage your medication? And if you're the well partner what role, if any, do you play around medication matters?

When Do You Tell A New Potential Partner About Your Health Status?

2012-09-13T11:35:00.002-07:00

I have a friend who is HIV positive. He has been so for more than two decades. He still wrestles with the question of when to tell someone he is dating about his status. He doesn't want to scare the person off, but neither does he want to mislead.

I have a twenty-seven year old friend who was just diagnosed with celiac disease. She wants to continue to throw herself headfirst into romance and not have to explain her diet restrictions to a new potential boyfriend.

A thirty-five year old friend lives with depression and has to continually adjust her medication as her symptoms change. She doesn't like to admit even to herself that she wrestles with depression and often ends relationships before her symptoms require conversation.

This is a complicated area and there is no one right answer for all situations. Balancing honesty to another with your own privacy needs is a tricky equation. Your health and its requirements is your business -- up to the point where you and your friend start to feel really interested in each other and inch towards commitment. It's still your business, but just like other aspects of your heart, mind, and soul, your health starts to stretch to become shared ground.

So, what might be some considerations for telling?

Wait until he/she starts to matter to you. But don't wait too long.
Be willing to answer questions, even before he/she asks them.
Be as comfortable with your condition as you want your potential partner to be. Your own acceptance level of your condition will have an impact on his/her experience of the situation.
Give him/her time and space or attention and empathy. You probably needed a combination of these elements, and so might he/she.
Lean on your friends. That's always a good thing.

How did you decide when to tell your partner? What happened when you told him/her?

What Is Your Relationship with Your Primary Care Doctor Like?

2012-09-02T23:30:00.000-07:00

I heard two stories recently about primary care doctors. In one the PCP was heroic in helping the patient, a woman who has a painful neurological condition, not only find a miracle-making specialist, but he also made sure medical records got transferred, and followed up with the patient and the specialist to ensure that the connection was solid and productive.

In the second story, a woman, with MS, had a heroic PCP who expedited referrals, verified record transfers, and followed up - not only with the patient, but also with her partner. One day, the PCP asked the patient if he could speak with her husband (who had accompanied his wife to most of her appointments). The patient gave her permission, and the PCP brought the husband into his office, and simply asked him, "How are you doing?" This was the first time this had ever happened for the husband with any of his wife's many doctors. He told the PCP about his worries and left the office feeling much lighter, and accompanied. He brought this lifted spirit back into his relationship with his wife.

This conversation took all of 7 minutes.

What is your, and your partner's, relationship like with your PCP?

Couples and PTSD

2012-08-27T10:24:00.002-07:00

excerpted from an article on Boston.com by Deborah Kotz

Couples therapy helps relive pain of post-traumatic stress disorder

"About 1 in 12 Americans experience post-traumatic stress disorder at some point in their lives after experiencing a violent crime, war zone, or other traumatic event; all too often, the flashbacks, anxiety, insomnia, and withdrawal from everyday life leads to marriage conflicts and divorce. Now, though, new research published in the Journal of the American Medical Association suggests that a specific form of couple therapy can both improve symptoms of PTSD and lead to stronger romantic relationships.

In the trial, 40 heterosexual and homosexual couples -- with one partner having PTSD -- were given either weekly therapy sessions in the VA Boston Healthcare System or in a Toronto research center or were assigned to be in a control group; those with PTSD who had the couple therapy experienced a greater improvement after 15 weekly sessions of therapy compared to those who didn’t have the therapy."
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Thanks to Ms. Kotz for writing this piece. Those of us living with physical or emotional illness know how much our partner is affected and how much our partner affects us. It makes perfect sense that treatment that involves both partners will have a stronger outcome.

Have you used couples therapy as part of your toolkit for dealing with illness?

Travel Tips for Rolling With Illness

2012-08-23T10:08:00.002-07:00

PFAM - Patients for a Moment - a monthly collection of posts written by patients about some aspect of their experience of living with illness is up at Duncan Cross's excellent blog. Have a read.