Caring for Your Relationship with Your Partner


“After killing ourselves for so long and finally getting to the ‘us’ time, now she has PH. We were looking forward to spending some time and money on us for a change.”

“My hubby said that he felt like it was his job to ‘FIX’ everything for me, and he gets so upset with himself because he cannot fix my PH. That really opened my eyes to why he sometimes acts the way he does or says the things he does.”

“It is hard for a caregiver to watch what PH does to their loved one. I think for some (like me), there is safety in denial.”


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What to Expect

Cindy, who has PH, and John, her caregiver, have been married 36 years.

Few couples stop to consider the implications of the words, “in sickness and in health,” but a diagnosis with pulmonary hypertension quickly calls this marriage vow to action. Whether you’re young newlyweds or settled into retirement, when a partner is diagnosed with PH, it’s common to encounter difficult feelings, fears and challenges. There’s no way to plan for a diagnosis with PH, for the hospital visits, complex treatments, shifting priorities or uncertain future. PH is a “whole life” condition that can bring major changes to household finances, family roles and responsibilities, and daily life. In short, if your partner is living with PH, then so are you.

Many couples find themselves putting their relationships on the back-burner to make room for the new tasks and commitments that PH introduces to daily life. As a caregiver to someone living with PH, it’s likely you’ve taken on a host of new and unfamiliar responsibilities. When their partners are diagnosed, many caregivers rise to the occasion, attending doctors’ appointments, learning everything they can about PH, and ordering medications. Some find themselves taking on chores and roles that once fell to their partner. From paying the bills to housework to childcare, caregiving can often feel like two or three fulltime jobs. With everything there is to do, it can be difficult to find time to focus on the fun side of being in a loving relationship. Early on, “date night” may come to mean an evening mixing medications; the “rainy day adventure fund” may be redirected to cover medical bills; and the only “romantic getaways” may be trips to specialty medical centers. Shifting priorities and demanding schedules can take a serious toll on both emotional and physical intimacy.

Time isn’t the only challenge couples living with PH face. When two partners who once operated relatively autonomously begin to rely on each other in new ways, it’s common to experience major shifts in your marriage or partnership. Depending on the severity of your partner’s PH, you may be called upon to support your loved one financially, physically and emotionally. Many caregivers find that taking on all these new roles can throw off the delicate balance that once kept their relationship afloat. It can be difficult to adjust to new relationship dynamics, particularly if you have yet to give up hope that life will return to the way it was before PH. Many couples find themselves moving in and out of denial, anger, bargaining, depression, and acceptance as they grieve for the relationship they’ve lost. These responses to loss and change can begin to feel like very real parts of your current relationship. You and your partner may grieve at different paces, putting your relationship to yet another test of endurance.

Working on a relationship while dealing with PH and managing a household is not easy. It’s likely that both you and your partner are dealing with emotions that are difficult to talk about openly and honestly. Some caregivers feel guilty that they aren’t sick. Others have so much on their plates that they feel overwhelmed, ashamed, or even resentful. Your partner is likely experiencing difficult emotions too, which may make it more difficult to communicate your own feelings and concerns. The caregiver is often called upon to be the voice of reason, the “rock,” the constant, and the receptacle of their partner’s sadness, pain and fear. While you may have leaned on your life partner for support before PH, it’s common to want to protect your partner now that he or she is sick. Yet trying to handle everything on your own can lead to isolation, dissatisfaction and blame. The tendency to hold back can affect both the caregiver, who has lost a primary source of support, and the patient, who may miss feeling relied upon and being perceived as strong and independent. Trying to protect your partner from difficult topics can sometimes backfire, leaving him or her feeling dependent or isolated. One patient asserted, “Just because I have PH, doesn’t mean that I can’t think.  Sometimes I think my wife believes PH has affected my brain … actually, my brain is the healthiest part of me now, and I really want to be asked to use it.”

All of these feelings and challenges are normal, but over time, without attention and effort, they can take a toll on even the most loving and devoted relationships. By taking the time to acknowledge and talk about the challenges you’re both up against, you can begin to work on your relationship so you and your partner can face this journey as a team.

Adapting and Moving Forward


PH patient and caregiver couple in BaltimoreWe’ve all heard the advice: “You can’t take care of anyone until you take care of yourself.” But is it really possible to devote time to yourself and your relationship when your partner’s illness requires so much daily attention? The answer is yes, but it’s not easy. Read on for some suggestions for prioritizing your relationship in an already hectic life.

Review. Talk about your needs, your partner’s needs, and your relationship. It might feel most natural to begin by talking about what your partner is looking for from you as a caregiver. Listen openly and without judgment to what your partner has to say, and be prepared to step back in certain areas if you’re asked to do so. One caregiver told us, “I found out from my wife that I was taking away her independence. I didn't realize I was [doing that] … I was [simply] very concerned for her.” Also discuss your needs, and the ways in which your loved one can better support you. Even couples who have been living with PH for years can make changes. Your roles will likely evolve over time. Use changes — especially good changes, like stability on a therapy regimen or reaching a milestone — to prompt discussion of how you are working together and what you need from each other in your roles. Prepare for emotion — both yours and your partner’s — and recognize that emotional vulnerability is both normal and the foundation of empathy, change and healing.

Reflect. Take an inventory of the things that you loved and admired about your partner and relationship before PH. While you may not think about this list as much as you did when you first fell in love, reflecting on the things you see in your partner can remind you of why your relationship is worth your time and attention. Think about the things you enjoyed doing together as a couple before your partner was diagnosed. Which of those activities do you still make time for? Consider the factors that led you to give some of these activities up. Your loved one’s physical limitations? Lack of time? Simply acknowledging the ways in which things have changed is an important first step towards accommodating those changes in your relationship.

Innovate. If you’re unable to do all the things you enjoyed prior to your partner’s diagnosis, work with your loved one to find new ways of spending time together. Take the core characteristics of your shared interests and work on integrating new fun and feel-good activities into your routine. Think about hobbies you haven’t tried in the past because you were too busy with other activities. Re-create special memories with an updated twist.

Take breaks. It’s a good idea for both you and your partner to rely on people outside of your relationship for some of your support. If your partner occasionally asks a friend or family member to accompany him or her to a doctor’s appointment, try not to take it personally. Going outside of the relationship for connection and help doesn’t mean that your loved one doesn’t appreciate everything you do. Take these opportunities to catch up on the news, read a book, or do something creative. If these opportunities don’t present themselves naturally, seek them out by asking a close friend to help out with an item on your to-do list while you take some time for yourself. Taking a break from your partner does not make you insensitive or less devoted. Think about life before PH. Chances are good that you didn’t spend every moment together. The most loving partners spend time apart so they have stories to share at the end of the day.

Schedule. Taking time for yourself as a PH caregiver isn’t always easy, but it is important. Find time (even just an hour a week) to do something you enjoy, without your partner, and have your partner do the same. Formally scheduling independent activities into your routine ensures that you’ll get the alone time you need, without the guilt you might otherwise feel doing something fun without your partner. Go for a run, spend time with friends, or take a class. Activities that involve physical activity and socializing can keep you feeling energized, both physically and mentally.

Explore. If you and your partner have struggled to reestablish physical intimacy, there are steps you can take to begin to overcome many of your fears in this area. Begin by talking to your partner’s PH medical team, who may be able to offer specific recommendations and assurances. Some couples find that they’re able to reintroduce physical intimacy relatively quickly after the patient is on medication and in stable health. But even if physical acts need to be mellowed or altered, they are generally still possible. Talk to your partner’s doctor about positional changes to accommodate for medical devices or pain. Over the long run, it’s also useful to broaden your definition of intimacy. Gentle touch, massage, verbal and non-verbal expressions of love, foot rubs, laughing, sharing memories, watching intimate movies, and simple physical closeness can be welcome substitutes when other types of physical intimacy aren’t possible.

Share. Open communication is critical to a healthy relationship. Even on busy days, make an effort to stay conscious of your mood, as well as your partner’s. Talk about small problems and gaps in communication as they come up. You might also consider scheduling times to touch base about how you’re both feeling. Many of us wait for a crisis or argument to talk about what’s working or, more often, not working in a relationship. But putting check-ins on the calendar will give you the chance to talk when you’re not worked up, when you and your partner are both more likely to listen and respond with a clear mind. Getting in the habit of listening and sharing in your everyday life will also help you communicate more effectively when you do argue. 

Get support. Find people to talk to about PH and caregiving, as well as about your “non-PH” life. Participate in support groups with your partner to understand his or her experiences from a new vantage point. Get involved in caregiver groups so you have a safe, confidential place to share your story and vent frustrations with people who can relate (see Additional Resources). One caregiver credited the support she received from others in the PH community as a critical factor in helping her reach a place of acceptance: “My way to battle my denial was to join PHA and become a part of the community.” If you feel overwhelmed, burnt out, or depressed, you might also consider speaking to a therapist, physician, or clergy member. Being honest with yourself when you need help and reaching out to get it can only make you stronger.

Accept. Acknowledge to yourself that you will never be perfect in every role. Reflect on your expectations for yourself and for your relationship. Make an effort to honestly assess how important each expectation is to your happiness. Prioritize them and get rid of expectations that are unnecessary, redundant or unrealistic. Then make a plan for meeting those that remain. Recognize there are factors outside of your control (like PH), and try to focus, instead, on taking charge of how you respond to new challenges as they present themselves. 

Thrive. Many couples find that once they’ve adapted to new roles and expectations, PH actually brings them closer. They’re reminded of the qualities that attracted them to their mates in the first place, and they discover new traits (like resiliency, courage and faith) that help them reconnect. One caregiver said of his wife, “She is a fighter. I have learned to trust in her.” Another caregiver told us, “For sickness and health, better or worse, we have each other and are stronger for it. We take care of each other and battle PH every day, trying always to make the best of it we can.” With patience and commitment, your relationship will continue to change and grow. Over time, it will become easier to see yourself as not just a caregiver, but as an advocate, partner and friend.

Additional Resources

Information from PHA

Books and Web Links

Support Resources

PHA is grateful to Allyson Rupp, LCSW, of the Vera Moulton Wall Center for Pulmonary Vascular Disease at Stanford Hospital and Clinics for her contributions and review, and to all the caregivers who shared their experiences to make this resource possible. PH medical review by Mike Hayes, RN, BSN, CCRN, Pulmonary Clinical Nurse Coordinator at Intermountain Medical Center in Murray, Utah.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: March 2012

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.