A place for couples dealing with illness to find resources and advice, hear stories, and discover support. Whether the illness is chronic or acute, the result of disease or accident, couples can learn strategies for coping with the changes illness brings into our relationships and our worlds.
The information provided in this blog is for educational and support purposes only. It should not be used as a substitute for seeking professional care.
I wanted to let you know about the reissue of my book under the new title: Love in the Time of Chronic Illness: How to Fight the Sickness Not Each Other.
The book is a deep and practical guide that helps couples, and any patient/caregiver partners, stay connected and grow even stronger as they cope with the powerful effects of illness or trauma.
If this experience touches you or someone you know, I encourage you to pre-order this book on Amazon, in either Kindle or print versions. While the book will officially be available on June 12, pre-ordering now will help boost the book's visibility.
Love in the Time of Chronic Illness has many stories from couples who share the lessons they learned about living with illness or trauma:
Frank and Linda, whose stroke caused them to rebalance their relationship in new ways
Abe who, after being Betty's primary caregiver for 30 years as multiple sclerosis stole more and more of her abilities, decided that he had to bring joy back into his life
Francis and Ted, who discovered levels of intimacy and authentic communication they believe would not have been possible without the intrusion of her chronic pain condition
Robin and Chuck, who used "active coping" to stay as close to "normal" as possible during his battle with cancer
You'll also read the advice of a range of experts who offer many strategies for coping - emotionally and practically. This new edition has an additional chapter for health care providers and health care organizations. Finally, strangely, for a book about such a serious subject, it's a good read.
So, if you know anyone going through this experience, or if you just want to help launch this important book, please pre-order the book on Amazon. If you like thebook, I would greatly appreciate your writing a positive Amazon review. Hereare some reviews that were written about the earlier version of this book.
Thank you for for anything you can do to help get the word out about Love in the Time of Chronic Illness. The experience touches so many of us, and this book can really help. If you can, please forward this email, and post on Facebook and Twitter.
As I climb back out of my recent pain relapse, my husband's face has become even more important to me. It's more than the face of a morning greeting or an offer to pick up Chinese take out on his way home.
His face has become my anchor and my mirror. His face is a reminder that there is a world with love in it beyond my pain. His face is like a siren's song calling me to emerge from my pain cocoon and join him in a moment of connection. When I see his face I can climb out of the nest I've constructed with pillows and blankets on our couch and know I have another direction I can head in.
His face is also my mirror. When I'm in pain, I can't look at myself in the bathroom mirror. All I see is pain and the fear of more pain. When I look at my husband's face I see more than his pain at my pain. I see flickers of hope. His hope becomes my lifeline to the possibility of less pain, even no pain. His hope tells me the story I want to hear but don't have the courage to write for myself.
Now that I am doing better and have once again tamed my pain with my reliable arsenal of meds and physical therapy, watching his face becomes less urgent, less like a lifeline and more like a place I like to live.
What do you see in your partner's face, whether you are the one with the illness or the one who is the caregiver? What do you look for when you look at your partners face? What is there, and what is missing?
From an article by a therapist at CTCA -- advice for couples living with cancer. He hits many nails right on the head:
1. Keep communication open: Communication may not always mean agreeing, but having a goal of being honest with one another is important. 2. Rely on developed skills: Most couples do not realize that they already have the tools to cope with cancer based on previous crises. Remembering how they overcame difficult situations in the past may help a couple develop coping strategies in the current situation. 3. Allow room for a "time out": Cancer can cause feelings of anger and depression. Allow your partner to feel their emotions and be comfortable with him / her taking a moment alone. The end goal is to fight the cancer, not one another. 4. Remain intimate: Intimacy does not necessarily equal sex. In fact, cancer treatment side effects often make sex uncomfortable. Instead, intimacy means spending time together - holding hands, reading together, talking, etc. 5. Find time to do the things you love: Take time to play and have fun together - fishing, going to a movie, playing a board game, or even watching a sports game on TV. 6. Boost your support network: When a significant other is diagnosed with cancer, the caregiver is tasked with extra responsibilities. Don't be afraid to ask friends and family for help, giving your partner a chance to take a break and process his or her emotions. 7. Find other couples in a similar situation: These couples, often found in support groups, may understand what you are going through. Don't be afraid to seek tips and advice from others, as well as share what you have found works in your own relationship while recognizing that each couple's experience is unique. 8. Keep each other accountable: Cancer causes stress, and stress compromises the immune system. Remind each other to participate in healthy activities to remain resilient - getting plenty of rest, eating nutritious meals and exercising. 9. Don't blame each other: Many people blame themselves or their loved ones for getting cancer, including being too stressed out, working too hard, or smoking. Realize there are many factors that contribute to cancer, not just one. 10. Speak with a therapist: Speaking with a therapist, who is unbiased and has experience with other cancer patients, can help couples express their emotions, confirm that the feelings they are experiencing are normal, and help provide useful coping tools.
A reader recently posted this as a comment to my article on What Do You Do When Illness Makes Sex Impossible. I am reposting it here because I think his situation is a common one, that often stays hidden because it is fraught with emotions and complications. I'm also posting my response as a comment. I encourage you to share your stories and approaches to the challenge of sex and illness.
Anonymous said...
I am a 66 year old male and married to a 62 year old women. We have been married almost 20 years. We had a sex life that was a few times a month until she got sick 7 years ago. She had cervical cancer. Went thru chemo and radiation, and a hysterectomy. Then cancer returned and about 5 years ago she had a 9 and a half hour surgery that took everything including her bladder. She voids her urine from her side , and has an ostomy bag. Needless to say normal intercourse is not possible. And other things really aren't either. She uses a wheelchair and Walker to get around . Her sexual interest is 0 and require a good bit of care which I do.
I have reached a point where I am considering looking for a lover. It's not that I don't love my wife but I still have a need for intimacy .
Do you have any advice or suggestions?
I had a conversation with a smart, insightful, articulate woman this week who has reached her breaking point.
She has been the primary caregiver for her husband who has had cancer for many years. But even before the cancer, their marriage was troubled. She described her husband as self-centered, angry, quick to blame, and slow to forgive. He is also a proficient verbal sniper -- firing off ugly names and harsh critiques with great dexterity.
A few years ago his disease went through a period of acceleration. His symptoms grew more pronounced. And his selfishness and harshness kept pace.
Recently, he began experiencing another round of increased symptoms and is about to go through some diagnostic test to reassess his cancer's status.
This self-aware woman has reached her breaking point. She knows that if he declines, physically and emotionally, and she is in position to play the caregiver role, she will "be destroyed."
What should she do, as she assesses her options at this intersection of love and obligation?
This is an intersection many partners living with illness arrive at. Ill partners may worry about adding greater burdens and decide to suffer in silence. Or they may feel that their illness requires that their well partner pick up the loads they can no longer carry. Well partners may feel it is their duty to willingly pick up those loads. And well partners may also feel that one more straw dropped on their load will break their backs.
How do you balance your obligation to your partner (whether it comes form love or a sense of duty) and your obligation to yourself?
There are no hard and fast rules in the illness playbook that answer this question. Each partner must dive into their repository of personal values, family legacies, love for yourself and for your partner, disappointments in yourself and in your partner, and your vision of the future.
In Part 2, we will explore how to dive into that repository and come up with the path that is right for you.
excerpts from an article on Medical Press about the effect of arguments between partners (and other stressors) on the immune system:
"Rebecca Reed, a doctoral candidate in family studies and human development in the University of Arizona College of Agriculture and Life Sciences, is studying how a couple's recovery from an argument affects their immune systems and overall health.... Though we hopefully know the difference, our bodies' immune responses don't differentiate between a peeved lover and a predatory lion. When confronted with a psychological stressor, such as a tense discussion or giving a public speech, our immune systems respond the same as they would for an impending physical attack.... Essentially, too much psychological stress literally can make you sick, while the ability to recover from stressful situations may decrease risk of chronic illness and improve overall health and quality of life......." She believes that one way to turn off the immune response may be for couples to foster effective interpersonal communication with attention to each other's emotional states. This could help them not only emotionally recover from stressors, but also immunologically recover, she said." -------------------------------------------------------------
When Richard and I have a doozy of a disagreement both of us feel tender, even broken, for a while afterwards. I go into my cave and hibernate until I feel reconstituted. Richard immerses himself in his computer. After a bit of time passes, we reach out to each other again.
I really like the idea of each wounded partner helping the other to recover from the effects of arguing. It's a hard task for someone who is angry or defended to also be empathic. But the empathy is there, just retreated. If you can make space for empathy in the rush of anger, the disagreement is likely to be more tolerable, with a quicker, more balanced resolution.
How do you and your partner do arguments and disagreements? Do you feel the stress of arguing in your body? How do you recover?
"For older married heterosexual couples, the risk of divorce increases when the wife becomes seriously ill but such is not the case when the husband does.
According to social scientists from the Indiana University-Purdue University Indianapolis and University of Michigan, wives who experience health crises such as heart problems, cancer, stroke and lung disease increase the risk of divorce. Curiously, husbands who experience these life-threatening illnesses do not pose the same effect.
The researchers analyzed 2,717 marriages in the Health and Retirement Study from 1992 to 2010. These couples started out healthy in their marriages and how the onset of a serious illness affected the quality of their marriages were measured in the study."
This study did not analyze why this is so, but researchers speculated that gender norms around caregiving may play a factor.
Duh. You think so!?!??!!
Both Richard and I were surprised and reassured that he was able to be so selfless when my pain condition was at its worst. He had never been tested like that before. He was not only selfless, at times he was heroic.
But I always thought that he was the exception. I have heard from a few blog readers that they too had heroic partners. I have heard from many more that their (male) partner fit better somewhere on the awkward to negligent scale.
However, to put the entire blame on the male partner or on gender norms misses the way the couple is intertwined and operates as an integrated system -- with each move balanced by countermoves. The couple dance is a complex one, honed over years of practice. Illness plays a new tune and requires that the dance change and that couples adapt with new moves.
Illness puts a terrible strain on relationships. And couples rarely have either the support or the education they need to adapt and weather illness together. When the well partner feels sustained and engaged, both partners are uplifted. Likewise, if the well partner is disregarded and disengaged, both partners will sink.
When I appreciated Richard's efforts, he felt seen and needed and could use that to bolster his caregiving efforts. When I disengaged from him and chose isolation rather than connection, he too distanced. When we talked about what we each were going through and needed from each other - there was more life force available from which we could each draw.
Has your partner disengaged? How does that effect you? Have you given up on him (or her) and sought support elsewhere? Have you found ways to re-engage with your partner?
How Cancer Affects Your Relationship by Casey Gueren
"Jennie Bushnell and her husband Dan had been together six years when she was diagnosed with Hodgkin's lymphoma. Since she was pregnant with their second child and they chose to delay treatment until after the baby was born, they didn't tell their families right away.
"We were each other's only confidant," says Jennie. "We were each other's only shoulder to lean on, because we didn't know what our future would be at that point."
From then on their bond got even stronger—through endless doctors appointments and six months of treatment.
According to new research, leaning on your partner during this time really can bring you closer. Among couples facing early-stage breast cancer, dealing with the illness as a team was associated with greater intimacy, according to a recent study in the Journal of Social and Personal Relationships.
From Illness to Intimacy
In this particular study, pairs who talked about how cancer was affecting them as a couple and truly listened to each other had greater intimacy at the follow up. That was also the case for Jennie and her husband who were spending even more time together than usual given all of her doctor's appointments. They talked about the cancer, practical things like insurance and wills, the new addition they planned to put on their house, and the vacations they wanted to take with their kids.
"It was a distraction, but I think we felt life if we thought long and hard enough about all the good things, they would just fall into place that way," says Jennie.
Aside from planning, they also retained their sense of normalcy—another factor that predicted intimacy in the study......"
In my experience, couples who have lousy communication patterns before the illness continue to have lousy communication after the illness.
UNLESS...
Unless they actively, consciously learn how to change their communication style to one in which there is greater listening, greater empathy, greater honesty, and less emphasis on only problem solving and at least a few less hours of TV watching (unless, of course, it's Showtime's Homeland).
But with attention and some guidance, couples can indeed become closer through illness than they were before illness entered their lives.
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?
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:
--------------------------------------------------------------------------------- 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.
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.”
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?
While this article doesn't refer to illness, I thought it might be interesting to you for it's take on how to thwart divorce. Divorce and serious illness are not strangers to each other. In one study, when the man became ill, only 3 percent experienced the end of a marriage; but among women, about 21 percent ended up separated or divorced.
.....A relationship does not just end over night. It takes time. But there is that point in the relationship where the marriage "jumps the shark," as they say. It's often that one thing that happens over and over again, without the ability to change or compromise, and both partners emotionally close down on each other.
So when that one thing comes up, instead of shutting down, putting up your dukes, or setting down your battleground lines--basically letting your ego take over--what if that moment, when everything started going haywire, you actually do the exact opposite of what you normally do? What if, instead, you thought to yourself, "What does my partner need right now, what does my partner need today that makes them feel loved, and how can I provide that for them?"
So many times we really do know how to love the other partner, we know what they need and how to provide it. But we refuse to do those things because they're not doing things for us, they're not giving us what we want. That's probably how the majority of relationships end. The If-you-don't-do-it-for-me-I'm-not-going-to-do-it-for-you syndrome, and then a couple years later you're divorced, angry, pissed off, and ready to start over with the hope of a fresh new relationship. One that will probably repeat itself if you did not learn the lesson the first time around.
We refuse to love our partner the way they need, so the battlegrounds are drawn. Once the battlegrounds are drawn, you can kiss that relationship goodbye because there is no way in the world you're going to give in at that point. And neither is your partner. It often becomes a very dangerous tit-for-tat game that has no chance in hell of ever surviving or finding the love in the relationship again.
Relationships are a beautiful thing, and we could cut down on the divorce rate dramatically if we just spent a little bit of time every single day loving our partners instead of responding by how they treat or have treated us.....
While hiking a steep mountain trail on vacation in Acadia National Park in Maine, my foot found the only rock with slime on it. I went down with a bang and dislocated my shoulder.
Richard and I had to hike back up to the road and hail a ride to the local hospital. Now, I've known pain, years of it. But this pain was a new taste treat and had me groaning and cursing and counting down the seconds until the nurse dripped some morphine into my vein, and then some more.
They were able to relocate my shoulder fairly easily and with that, the pain subsided.
Richard was by my side throughout -- helping me hike to the road, holding my stuff, sitting by my bed in the hospital. He was present and hugely helpful. And as the days passed and I had to learn to meet the world left-handed, he continued to be responsive to my requests for assistance and to problem solve.
He was wonderful, but I felt alone and wanted more -- and illegitimate for feeling greedy when he was trying so hard.
What was missing for me was overt empathy. At the same time I worked to be independent and do it all myself, I was a wounded bird who just wanted to be sheltered and babied. I did my best to tie my shoelaces one-handed while trying to ignore my yearnings to have my needs anticipated without speaking them aloud and to be cuddled and coddled and told that it would all be OK.
After a few days, I could no longer sustain this inner tension. I was growing weary of the strain and resentful of Richard's helpfulness without emotional empathy. We finally had a talk.
I tried to tell him what I was missing without blaming him for not providing it. I cheered his efforts at practical support and told him, as explicitly as I could, that I both accepted him and loved him, and still felt the sadness of not getting the kind of loving my injury had awakened.
He listened. And he tried to give me more emotional support. When he saw me struggle to wrap my sling around my shoulder he said to me, "I am so sorry you're having to go through this. I wish I could make it all better." His saying that made it far better for me than any attempts to help me adjust my sling.
The more I thought about the specifics of my current situation, the more I realized that the condition of being in a close relationship periodically involves the existence of a gap between what you get and what you feel you want. The gap of life.
The tricky part is not to deny the reality and legitimacy of your wants; while at the same time not punishing your partner for not fulfilling them and (and this is the trickiest bit) accepting him, with love and gratitude, for who he is and for staying in the conversation with you.
To hold both the love and the sadness, and sit side-by-side in the gap of life, together.
A study of older married couples that gives new meaning to the matrimonial adage “for better or worse” finds that spouses have a much greater impact on their partner’s health than previously known.
The study, published in the current issue of the American Psychological Association’s journal Health Psychology, finds strong associations between the physical and emotional health of older married couples – and provides important new information on the psychological toll of physical limitations in old age.
Researchers from the University of British Columbia and Pennsylvania State University tracked the emotional and physical histories of more than 1,700 older couples over a 15-year period, using data from a major U.S. survey. Participants ranged in age from 76 to 90 and many had been married for more than 40 years.
In individuals and couples, the researchers found a strong relationship between “depressive symptoms” (unhappiness, loneliness and restlessness) and “functional limitations” – the physical inability to perform such basic tasks as climbing stairs, picking up objects, cooking and shopping. While previous studies have linked physical and emotional health in individuals, this is the first study to show the phenomenon in couples.
“This study shows how important marital relationships can be in determining old age health,” says lead author Prof. Christiane Hoppmann of UBC’s Dept. of Psychology. “In addition, we show that many of the associations between functional limitations and depressive symptoms that have previously been found in individuals are in fact related to spouses.”
The researchers found that spouses’ depressive symptoms waxed and waned closely with those of their partners. Functional limitations in one spouse was not only associated with their own depressive symptoms but also with depressive symptoms in the other spouse. Increases in depressive symptoms in one spouse were also associated with greater functional limitations in both spouses.
“When people are depressed, they tend to want to stay at home – but that causes a spouse to stay home more too,” says Hoppmann. “That’s a problem, because when older adults stop being active – going for walks, socializing, shopping – they risk losing that functional ability. It’s that old saying, ‘use it or lose it.’”
“These findings help to illuminate the often vicious cycle between depressive symptoms and our physical abilities,” Hoppmann adds, noting that associations remained after controlling for individual (age, education, cognition) and spousal covariates (marriage duration, number of children) and did not differ between women and men.
Surprisingly, the researchers found that the relationship between depressive symptoms were slightly stronger in couples than some individuals, suggesting that a spouse’s physical or emotional health can have a greater impact on their partner’s health than their own in some cases.
“Being married for a long time is a very specific situation, it really ties your lives together,” says Hoppmann, whose previous research has explored happiness in older couples. “These findings show just how interdependent, emotionally and physically, long-term couples can become.”
Hoppmann says the findings point towards a greater need for holistic healthcare approaches. “This interdependence suggests that we cannot simply focus on individual patients, while disregarding the major impacts their illnesses can have on the people in their lives,” she says, noting studies have shown caregivers to be at a greater risk for mental and physical health problems.
The researchers – which include Anita Hibbert, a graduate student in UBC’s Dept. of Psychology, and Prof. Denis Gerstorf of Pennsylvania State University – say further studies are required to determine whether these spousal associations are specific to long-term married couples and whether they generalize to aging Baby Boomers who enter old age with more diverse relationship histories, including divorces and remarriages.
Sorry for the short absence. Richard and I were helping my mother transition into an assisted living facility and sort out her medical needs. About six months after my father's death she hit the "alone" wall. Not loneliness, which can be tempered by social activity - but alone-ness. She became afraid.
She and my father were not very compatible. She experienced his questions about her activities as attempts to control her, and he experienced her wordless, stone-faced responses as either not having heard his question or as not having done the deed he was asking her about. So he would ask again, and again, with increasing impatience -- especially after he became physically disabled during the last two years of his life. And she would get stonier and stonier. You can see the endless, disappointing (to me) loop.
At the six month post-death point, it wasn't that she missed him or had regrets that disturbed her quietude, it was that she started becoming afraid of being alone. The night-time what-ifs intruded more and more into her awake time. What if I fall? What if I can't reach my cell phone? What if my alert necklace doesn't work? What if there's a hurricane? What if something happens and there's no one there?
So, we helped her move into an assisted living, where she is much more tranquil.
As we helped her settle in, I wondered: Must illness exacerbate the destructive behavioral and emotional patterns couples used during their healthier years? Does illness need to be the final stage on which the partners enact the same old script that locked them into battle or silence in healthier days? Or can illness be the catalyst that bulldozes the destructive relationship loops and spirals and clears a path to more nurturing interactions?
What is your experience? Can illness change relationship patterns for the better; or does illness just exacerbate the pre-existing negative behaviors?
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?
The piece below is from a site called Zikkir, which seems to be an aggregator of news stories.
I'd be interested in hearing your advice about how to tell a potential partner about your health situation. -----------------------------------------------------------------------------------
1. Practice what to say Before you drop a bomb on a potential mate, rehearse your speech with a trusted friend or visit a therapist to talk it through, suggests Ken Robbins, MD, a clinical professor of psychiatry at the University of Wisconsin–Madison.
“It’s good to have somebody as a sounding board in a situation like this,” he says. “How you handle this is not something your partner is likely to forget.”
Laurie Davis, an online dating expert based in New York and Boston, suggests asking a friend what sounds most intimidating about your condition and getting his or her advice on how to smooth it over. Getting a second opinion can help you decide how much to say (and when and where to say it), and running through your script a few times can make you more comfortable sharing your story.
“You don’t want to overwhelm your partner but you want to be sure to give him or her all of the important facts,” Davis says. “You should definitely practice before you tell your match, or you’ll most likely fumble through the conversation uncomfortably.”
Mark Snyder, a 32-year-old writer from New York City, used to dread telling a new boyfriend that he was a recovering alcoholic. “I don’t think I was ever able to shake off the feeling I was springing the information on him, usually when we were either out to dinner and he wanted to order a bottle of wine, or at a party where alcohol was introduced,” he says. “I often blurted out, ‘Oh, I don’t drink. Sorry.’”
That changed, however, as he got used to talking about his condition. “As time went on, and I got more comfortable with this side of my life, so did the ease with which I told a man not to expect a tequila-scented smooch at the end of the night,” he says. “I realize my blurting-it-out style was my own insecurities about sobriety. I celebrate it now.”
2. Never tell on a first date “Never tell someone on a first date,” Davis says. “The results will never be favorable.”
Dr. Robbins seconds that, especially if you’re worried that your health secret “is likely to define you before the person has gotten a chance to know you at all.”
That doesn’t mean you should lie—just let your partner get to know you first. “[Revealing too much too soon] may color how your partner sees you,” Dr. Robbins says. “It defines you before you’re ready to be defined.”
Jenny*, a 25-year-old graduate student from New York, had a breast augmentation when she was 19. “I don’t really bring it up, not when I’m first dating people,” she says. “But I’ve had people ask and I’m always honest with them. I wouldn’t see a reason to keep it a secret, especially if we’re getting serious.”
If you’re worried that your health secret might be a deal-breaker, you’ll want to ‘fess up by the fourth date, says Rachel A. Sussman, LCSW, a New York City therapist and relationship expert. That way, if your secret does make a big difference, you won’t have wasted too much of their time—or yours.
“Of course it can be painful, but if that’s the case, it’s better to know before you get too involved,” Sussman says. “It’s complicated if you withhold it and they find out too late. Dishonesty can ruin a potentially good relationship.”
Jill*, the 33-year-old from New York City, is currently in a long-distance relationship. However, she hasn’t told him about her bipolar disorder —yet.
“Too much too soon is not a good thing…. [But] I truly believe when you share a life with someone, you need to be in it together,” she says. “Men go bald; women gain weight after pregnancy. It’s not all roses and Champagne.”
3. Be casual yet confident So exactly how does one reveal a secret without just blurting it out? “It’s hard not to kill the mood with your health secret, because it’s probably not something that can be easily segued from a topic you would normally discuss,” Davis says. She recommends a conversation bridge, such as, “I feel like we’re heading in a great direction, so I wanted to tell you something.”
Just don’t overdo it: “You don’t want to frame this in a way that ends up making a bigger deal of something you don’t want made into a big deal,” Dr. Robbins says. In other words, make your delivery as drama free as possible.
Allison*, a 30-year-old marketer from Baltimore, tries to casually tell dates about her multiple sclerosis.
“Usually I’ll work it into another aspect of our conversation,” she says. “It’s a lot easier to tell someone I have MS as a side note in a conversation than to sit down and have a formal discussion focused solely on MS.”
However, even a casual, well-prepared speech doesn’t always meet with success.
“One guy just clammed up and didn’t want to say anything or go anywhere because, in his eyes, I might get hurt,” Allison* says. “And another guy became very controlling and tried to tell me what I should and shouldn’t be doing for my health. Um, you’re not my doctor, dude.”
Allison’s dates probably have their heart in the right place. “They’re trying to be helpful because they care about her,” Dr. Robbins says. He suggests that she have a confident, straightforward response about how she would like them to react; something like: “I don’t see this as something that defines me—but if I need help, please leave it to me to ask.”
4. Don’t have this conversation in bed—or anyplace you associate with intimacy Although this is a good guideline to follow when dealing with all types of relationship secrets, there’s only one instance in which it is a hard-and-fast rule, Sussman says: “Don’t wait until you’re naked in bed with someone to tell them you have an STD.”
That’s true for any condition, Davis adds. But Dr. Robbins notes that if your health secret is a sexually transmitted disease, you’re going to have to open up to someone sooner rather than later.
“If it’s something that’s going to have a direct effect on your partner, it’s something you’re going to want to talk about sooner, as opposed to an illness that isn’t contagious,” Dr. Robbins says. “If it’s something like hepatitis C, you really do have to talk about that very early.”
Amy, a 29-year-old graphic artist from Chicago, jokes that hepatitis C is the only thing she has in common with Pamela Anderson. But she’s serious when it comes to telling boyfriends about her illness, which she got through a blood transfusion at birth.
“There is less than a 3% chance of transmission within a monogamous relationship, but I’ve always been truthful and upfront about it, whether I ended up in a sexual relationship with someone or not,” she says. “They have a right to know.”
An ideal place to tell someone about your health secret—whether it’s a communicable disease or any other condition—is a park, Davis says. Just make sure there’s no one within earshot.
“Do not tell your partner during intimacy. Telling your partner your health secret means you are opening up to them, trusting them, and becoming more vulnerable,” she says. “The place you choose to tell them should reflect this.”
5. Seek out relationships online If you tend to meet potential partners through online networks such as Facebook or Match.com, you shouldn’t hint in your profile that you’re concealing a health secret. However, if you’re nervous about rejection or misunderstandings, you might be more comfortable dating someone with similar health issues.
There are many niche sites that cater to people with specific conditions, and they’re a great way to be up-front with potential mates who are in the same boat, Davis says.
6. Know when to give your partner space Even if you do your best to deliver a snag-free speech, it’s possible that there could be an awkward moment. “[If that happens], say, ‘I can tell by your expression that this is a lot to digest and I completely understand, and I’ll give you the time and space to do that,’” Sussman says.
Then, offer some physical distance but stay in contact, Davis says. “Give them the following day to breathe and think,” she suggests. “Call them on the third day if they haven’t reached out to you. Let them know that they are still on your mind and you can’t wait to see them again.”
7. Don’t take rejection personally “A good person will listen and be kind and not judge, but if [your health secret is] something they can’t live with, that doesn’t make them a bad person,” says Sussman. “It just makes them a bad match.”
And there can be multiple reasons for a rejection—many of which have nothing to do with you at all. “If your mother was an alcoholic and you date someone who’s an alcoholic, you might have to make a choice that it’s not healthy to be involved with someone in recovery,” Sussman says.
Besides, your perfect match will accept you no matter what, Davis says: “If things were going well up until the time you told them, keep in mind that they rejected your health condition, not you. At the end of the day, it means that they were not the one.”
8. Accept support Tiffany Sanchez Conover, 28, a store manager from northern Indiana, settled into a deep depression after her grandmother died. She slept all day, stopped eating, and became socially withdrawn—even with her husband. Still, she kept her depression hidden, because she wanted to “figure it out on my own.”
“[Eventually] I felt like I had to tell him because I could feel the strain it was placing on our relationship,” she says. “A person can only take so much of their spouse not wanting anything to do with them before they start assuming the worst, an affair.”
Tiffany’s husband was hurt that she hadn’t told him earlier, but he was glad she finally confessed. “After I told him, he was as supportive as could be,” she says. “He would stay up late to talk with me just so I wouldn’t feel lonely late at night, even though I’m sure he really wanted to go to bed.”
It’s especially important for married couples to be open to avoid hiccups in the relationship, Sussman says. “In healthy marriages, people lean on each other and are honest with each other,” she explains. “You can never lose by being honest.”
Tiffany knows that now: She and her husband recently went through a series of failed fertility treatments after finding out she likely cannot have children on her own. “I probably share too much now,” she says, laughing. “But it works for us. If I didn’t tell my husband how I felt about it all every day, I probably would end up depressed again.”
A counselor also helped Tiffany to get through the initial rough patch. Therapy and support groups —whether online or in person—are excellent options, according to Sussman. “Name the illness and there’s a support group,” she says. “If you go to your supportive community, you’ll hear stories of how people have handled these things in the past.”
Damn. I had been doing so well for so many months. Then WHAM. From nowhere. The pain started snaking its way back in. Was it the stress of a presentation I had to make in front of a prospective client? Was it the humidity? The unseasonal chill in the air? The baba ganoush?
My first reaction is to churn with anger. No. Not now. Go away. Damn you to hell.
But then I realize that the anger only riles up the neurotransmitters that fuel the pain. And besides, the pain is part of me, and there's no sense in raging against my self.
So, what do I say to myself to get through this episode? This may sound a bit crystal-headed, but it works for me. I say:
"All the healing forces in the universe pass through my body."
With each breath, I take in the surrounding molecules and the ones they have come in contact with, and the ones they have come in contact with, and the ones they have come in contact with - to the end (or the beginning) of time and space. It all flows through me. And some of it must be healing.
What do you say to yourself when you have a relapse (or when your partner does)?
Judith S. Wallerstein and Sandra Blakeslee, authors of The Good Marriage, identify nine specific tasks couples must tackle in order to create a good marriage. The fourth task is a tough one: "to confront and master the inevitable crises of life, maintaining the strength of the bond in the face of adversity." This is probably the last thing a young couple is thinking about when they fall in love and look at each other-and life-through rose-colored glasses. But there is no doubt they will have to deal with some serious issues during the course of their marriage.
It's sometimes said what doesn't kill you makes you stronger. The same thing can be said about a marriage: tragedies, crises, difficulties have the potential to make or break a marriage. Couples will face illness, death of loved ones, loss of jobs, problems with children, and a host of other challenges throughout the course of a lifetime. The couples who pull together in times of trouble follow certain steps, according to Wallerstein and Blakeslee. First, they look at the situation realistically and are able to think how their lives, and the lives of other family members, would be affected. They avoid"awfulizing" the situation: while they recognize the realities of the challenges they are facing, they're able to also take time out from dealing with the problem and try to enjoy life.
They don't blame each other or say, "I told you so," because they know everybody's human and prone to error. "In fact, they went further by trying to protect each other from inappropriate self-blame," the authors said of the couples who managed this task successfully. "They protected each other against self-reproach and shame." But they don't have to pretend everything is hunky-dory: they are able to acknowledge their fears, anxiety, sadness, and anger in appropriate ways, and sometimes not so appropriately. They can allow themselves, and their partner, to lose their cool once in awhile (without being abusive) and not take it too seriously.
Finally, "they blocked the crises they could see coming," said Wallerstein and Blakeslee. "Rather than waiting until a spouse's drinking or acting out or depression was overwhelming, they intervened at an earlier stage." They don't allow their partner to go over the edge in response to whatever crises is at hand: they let them know how much they care about them, and also let them know they will not stand by and watch their partner self-destruct.
I know this is an odd question. For many of us, our conditions don't necessarily disappear, but maybe they do fade in and out. Perhaps some of you (both the ill and the well partner) have luckily had the experience of being without symptoms long enough so that you can think of life as a journey and not just as an intermission between pain or fever spikes.
I had the good fortune of being in a symptom free phase for a few weeks and I started to notice that I was forgetting to do things like a sick person. I wasn't planning my days around the phases of pain. I bought tickets to a play three weeks ahead -- not out of hope that I would be ok, but out of forgetfulness to take my condition into consideration. Out of the irrelevance of pain.
One day, perhaps perversely, I starting reflecting on the question: "What do I miss about my pain condition?" I realized that I missed a kind of intimacy I had with Richard when pain was the major force in our relationship.
We see each other a lot more when I'm in pain, mostly because I don't really go anywhere. And we sit quietly, in the same room, not necessarily talking or reading -- just being. It's not that I want pain back so we can reclaim this kind of intimacy. I just want to remember to call on my consciousness to create this intimacy and not wait for pain to dictate the terms we engage on.
What does your illness do for you? What do you, or would you, miss about your illness should it fade for a week or two?
In November, 1999 I was whacked with a mysterious chronic pain syndrome that took me out of my life. With the help of my husband, my dog, and a combination of western and alternative approaches, I have a new life that includes working, writing, mountain climbing, smiling, and managing pain. I learned a lot along the way, especially about illness and the couple relationship. I'm also a psychotherapist, a business consultant, and have written a book about couples and illness, which will be re-released 6/12/18: Love in the Time of Chronic Illness - How to Fight the Sickness, Not Each Other
