Maintaining healthy relationships


“I don't feel like my family truly gets it, even though I think they really want to. Part of me spends a lot of time and effort protecting them because most reacted so strongly to the diagnosis. Another part of me wants to keep reminding them of the reality of the disease because they have clearly become complacent about it. Part of me wants them to be at peace and accepting and part of me feels like they need to keep paying attention. But I get annoyed with too much attention and fuss. It’s complicated.”


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Women at PHA on the Road in 2011

What to Expect

Building and maintaining relationships is one of the most important things that we do, yet something that we are rarely formally taught. More commonly, we approach our relationships through a process of trial and error based on what we learned about relationships from the adults who raised us. We then bring the patterns and strategies they used to our new relationships as we grow up. Sometimes those strategies work well, but sometimes they meet resistance because new friends and partners are raised with different ideas about what a relationship should mean.

Given this complexity, it can be especially challenging to manage various relationships while also managing a complicated and life-changing disease like pulmonary hypertension. While maintaining strong relationships isn’t always easy, by taking the time to identify some of the potential challenges, it is possible to find ways to ensure that you’re getting the support you need in high stress situations and feeling the love you deserve year-round.

Shifting Relationships

No one person’s experience with illness is identical to another’s, but there are some common frustrations and concerns reported by people affected by PH. One patient told us, “Even if you’ve got the most loving friends and family, there’s a part of it they just don’t comprehend.” If you have PH, chances are your relationships have changed since you were diagnosed. Relationship challenges such as poor communication and conflict exist in most relationships to some degree, whether or not you’re sick. As a PH patient, not only are you expected to deal with these “normal” challenges, but also with the complications that come with chronic illness: the stress of medical appointments and bills, the difficulty of making plans when you don’t know how you’ll be feeling next week or next year, the guilt of imposing life changes and responsibilities on loved ones, and the need for new kinds of support, just to name a few.

It’s a good idea to be prepared for a wide range of reactions to your illness from friends and family. Some people living with PH report that loved ones become over-involved after diagnosis, worrying too much and insisting on taking on responsibilities that the patients still feel capable of doing on their own. Other loved ones may have the opposite response. They may pull away when they learn that you have PH. Serious illness evokes feelings of fear and apprehension in some people for a number of reasons. Some feel uncomfortable because illness reminds them of mortality. Some people find it easier to withdraw from relationships to avoid getting hurt. Others may feel unsure about how to act around you, or guilty that they don’t know how to make things better. There are many potential reactions to a diagnosis and many of these reactions can be addressed with clear and empathic communication.

Patients at PHA on the Road in BaltimoreSometimes people, even people who care about you, may doubt that you are sick. One patient said, “I have a family member who just doesn't get why I can't walk as fast or as far when she beat cancer and now is running marathons.” Another said, “My boss had a talk with me regarding my tardiness. She has no empathy or understanding.” Because PH patients don’t always look sick in the way that people expect, you might get the sense that others assume you are “faking it,” or that they don’t understand why you are unable to keep up with the crowd. This can feel terrible — as though others are questioning your honesty or work ethic. Friends may begin to perceive you as unreliable because you cancel plans at the last minute due to health concerns. While these types of reactions are unwarranted and unfair, acknowledging the injustice may offer little in the way of comfort.

Patient and Caregiver Intimacy

Many PH patients with spousal caregivers find that a diagnosis with PH brings about real challenges to physical and emotional intimacy. As caregivers take on new responsibilities like household chores, caring for children and mixing medication, both patient and caregiver may begin to view their relationship as unequal. One PH patient admitted that she often felt like her husband treated her “like a baby.” A caregiver told us, “It can be difficult seeing each other all day long.” These types of changes can be difficult to talk about because they frequently run counter to an individual’s ideals about what their relationship “should be” like.

For some couples, an important component of intimacy is their sexual relationship. Like other aspects of life with PH, this may change post-diagnosis. It can be intimidating for either member of the couple to initiate intimacy if the patient is frequently short-of-breath or on intravenous medication. The patient may worry about stamina or tubes getting in the way in the heat of the moment. The caregiver may be concerned about hurting the patient. On top of specific concerns, there can be a social stigma related to illness that may play a part in tempering sexual activity. If PH changes the ways in which a couple is intimate, a ripple effect can occur. Both partners may begin to feel alienated, distant and unsupported.

The Physical and Mental Stress Continuum

Relationship changes and challenges can be exacerbated by the fact that PH patients are often operating at depleted energy levels. Anyone who has ever been sick will recognize that when we do not feel physically well, our mood is affected. On a down day, one woman living with PH said she felt, “limited, frustrated, powerless and alienated from others.” People describe having “shortened fuses” and being quicker to anger or snap. Irritability, sensitivity and hostility can emerge quickly within relationships. Generally, we end up snapping at those closest to us because they are the ones who are there. Sometimes it also feels safer to snap at someone who loves us because we know they won’t leave us. Yet even in “unconditional” relationships, the stress of chronic irritability can take a toll on you and your loved one. Hostility often provokes hostility, leading to escalation and hurt feelings on both sides. 

Some patients also observe a connection between relationship stress and physical symptoms. Elise told us, “A year ago, I went through a very stressful time with our daughter, and I was so short of breath and had so much chest pain from the stress that I thought my disease was getting worse.” As in other disease states, recent medical research involving PH patients shows that physical and mental health are indeed interconnected. The strain and anxiety of arguments and tensions, when left unaddressed, can take a very real toll on your energy levels and general health.

Adapting and Moving Forward

There are all sorts of complex situations and conversations that come up in relationships when you’re dealing with health issues, stress, uncertainty, insecurity and irritability. But with time and patience, it’s possible to help ease tension and work towards more authentic and meaningful relationships with the people you care about. 

Making Meaningful ConnectionsPatients hugging at PHA on the Road in Baltimore

Even the most independent human beings crave connection. While it can be tempting to pull back from people when relationships begin to cause stress, spending too much time alone is likely to make you feel disconnected, lonely, or even depressed. No matter how busy you get, set aside time to spend with family and friends. Acknowledge the ways in which your life has changed and take steps to accommodate those changes in each of your relationships. If you’re unable to participate in the same activities you enjoyed prior to diagnosis, work with your loved ones to find new ways of spending time together. Connecting with the people we care about on a daily basis can provide much needed stress relief and remind us of why we fight to get through the tough times.

It’s also important to find new sources of positive support. Many patients find that after they’re diagnosed with pulmonary hypertension, they need more support than they’re getting. This might mean that your poker buddies aren’t the people you want to talk to about your illness. It might mean that your best friend, while a great listener, can’t provide the 24/7 phone-a-friend service you’re looking for. It might even mean calling someone to talk when that’s the last thing on earth you want to do. Sometimes finding the support we need means reaching out when it feels easier to be alone.

Challenge yourself to make new connections beyond your immediate family and circle of friends to ensure that you’re getting all the support you need. Many people in the PH community find great comfort in talking to people who understand what it’s like to live with pulmonary hypertension by attending local support group meetings, PHA educational conferences, or connecting online (see Additional Resources). Connecting with new people who can relate to you in different kinds of ways can provide a number of very real physical and psychological benefits. Encourage your family members to do the same.

You might find that when all is said and done, some friends just aren’t capable of providing you with the friendship and support you need right now. Taking the time to grieve for these relationships can make it easier to come to terms with these losses. By allowing yourself to let go of relationships that are no longer positive sources of support in your life, you will make room for new and better relationships with the people who are here for you in the present. One PH patient said several years after being diagnosed, “My relationships are being tested more than ever. I lost some friends, but some friends actually came back once they found out I was sick.”

In addition to relying on support from family, friends and the PH community, there may come a time when it makes sense for you or a loved one to speak to a mental health professional. Psychotherapists are trained to help individuals, couples and families navigate the inevitable challenges that arise in life. While the thought of going to see a therapist is anxiety-provoking for some, years of research have supported the idea that speaking with a trusted and competent professional can increase your quality of life.

Communicating

Learning to communicate openly and respectfully can strengthen relationships old and new. But open communication doesn’t always come easily. It requires practice, patience and self-compassion. In some difficult situations, we don’t want to accept (to ourselves) how we feel. Sometimes our feelings are confusing, painful, embarrassing, or just don’t match up with the person we think we should be.

You can plan for conversations with friends and family members by reflecting on your feelings and needs before sitting down to talk. One PH patient found herself snapping at her family when they were painting the living room. While she had trouble communicating with her husband about her frustration in the moment, she was later able to reflect on the situation: “I was listening to my body, which was telling me to take it easy, but I felt like a slug not helping when everyone else was painting.” She realized she was angry because she felt embarrassed by her physical limitations, and needed her husband’s assurance that he understood why she couldn’t help more.

Honest conversations require the willing participation of both parties. Once you have a sense of how you feel and what you need, invite your loved one to talk. Find a time to do it when you’re both in a calm and non-defensive frame of mind. Sometimes this will mean walking away from a tense situation and returning to the conversation when you’re both ready for it.

Open, respectful communication requires two crucial ingredients: a willingness to listen without judgment and an acceptance of the present moment for what it is, imperfections and all. Here are some tips to help you incorporate these elements into your conversations with friends and family members:

  • Think about your intention. Before you begin, think about how you’d like to be there for your loved one throughout the conversation. Even if you’re the one initiating the talk, it can be very helpful to imagine how you’ll show empathy and strive for connection. Remember that you’re in this relationship because you care about this person. Relationships aren’t about being right or proving someone else wrong. They’re about listening, understanding and connecting.
  • Set ground rules. Name-calling, insults, bringing up the past, and pushing personal hot buttons are not allowed. Also be aware of your volume, tone and body language. These are part of the message you’re sending your loved one too. Agree in advance to take a break and step away if either of you find yourself getting angry. 
  • Try to speak from an “I” perspective. For example, rather than saying, “You’re totally inconsiderate — you never slow down to my pace when we’re walking together,” try, “I feel like I’m always trying to catch up with you and it wipes me of energy for the rest of the day. I’d like for you walk slowly when we’re together so I know you appreciate how much this illness affects me.” This approach acknowledges to loved ones that you’re taking responsibility for your emotions and will make it easier for them to listen to what you’re saying without feeling humiliated or attacked.
  • Listen actively. Monica finds time for a heart-to-heartWhen it’s your loved one’s turn to talk, make a conscious effort to listen attentively. Don’t start to formulate your responses in your head until the other person is finished speaking. Part of active listening means putting aside the need to criticize or react. Make yourself emotionally available and allow your loved one the space to share. When he or she is finished, repeat back what you think you heard to ensure that you haven’t missed anything important.
  • Look for realistic paths forward. Many of us are eager to problem-solve when we’re faced with challenges. Don’t agree to a solution that you know won’t work for you, even with the noble intention of making your loved one happy. It can be tempting to agree to “try harder not to argue,” but it might be more realistic to talk about the circumstances that typically lead to arguments so you and your loved one can focus on meeting each other’s needs more intentionally in the future. Not all situations have easy solutions. Sometimes the best you can do in the moment is talk about your experiences and agree to talk again when you’ve had more time to think the situation over and appreciate the other person’s perspective.
  • Practice, practice, practice. Sometimes these conversations will go well, and sometimes they won’t. Even conversations that don’t leave you feeling warm and fuzzy are worth the effort. Practice communicating honestly and thoughtfully as much as possible and it will soon become second nature.

Reclaiming Intimacy

Open communication is especially important if you have an intimate relationship with your primary caregiver. When two partners who used to operate independently begin to rely on each other in new ways, it’s common to experience major shifts in your marriage or partnership. Here are some tips from PH patients whose partners are also their primary caregivers:

  • Allow for a period of adjustment. One patient told us, “If someone had told me how difficult the first year with PH was going to be on our marriage, I think I would have been better equipped to handle the fighting. I wouldn’t have taken it so personally. Looking back, I can see it wasn’t that we were broken. It was that we were both worried out of our minds. Now, four years later, we take things one day at a time, and we’re closer than ever.”
  • Find ways to care for your caregiver. When her husband has the stomach flu, Val stops at the store to pick up juice and soup. She told us that while his sick days are more infrequent than hers, “It feels good to take care of him when I can.” While you might not need to care for your loved one the way that he or she cares for you, it can be helpful to identify places where your caregiver needs and appreciates your help and support. This can help reestablish a sense of balance in the relationship.
  • Do what you can for yourself. When you’re feeling up to it, do the chores you’re capable of. Helping out around the house when you’re able can offer a sense of independence and contribution that many patients miss when they’re feeling sick.
  • Know and respect your limits. Talk openly and honestly about what you can and can’t do. Listen to your body and encourage your caregiver to listen to you when you communicate your limitations.
  • Work up the courage to talk about physical intimacy. Many PH patients and their partners have active and fulfilling physical relationships. If you or your caregiver is concerned about your physical limitations in the bedroom, raise your concerns with your PH doctor and nurses. They’ve heard it all before, and may have recommendations from other patients. With a catheter in her chest, Geal says she and her husband are more careful when they’re cuddling or being intimate, but it hasn’t changed their love for each other.

Caring for Yourself

Friends spending time together at PHA's International PH Conference

While it may seem counterintuitive, self-care is absolutely critical to maintaining healthy relationships with others. Most of us think about taking care of those around us before we think to take care of ourselves. Remember the instructions you receive on an airplane — if the oxygen masks deploy, put your mask on first before helping those around you. This lesson is all the more important if you’re living with PH, as your physical health requires constant, mindful attention.

Control what you can when it comes to your health — take your medications, keep your doctors’ appointments, eat a nutrient-packed and low-sodium diet, develop an exercise plan with the help of your PH physician, and get plenty of rest. These seemingly simple steps can contribute to overall well-being exponentially. The better you feel, the more patient you’ll be with yourself and others, and the more positive attention you’ll be able to offer your loved ones. No one’s relationships are perfect, but with time and perseverance, most people affected by PH are able to develop rich support networks that provide them with love, understanding and connection.

Quick Tips

  • Take care of yourself before you turn your attention to others. Get plenty of rest, eat healthy, take your medications and keep a reasonable schedule.
  • Be forgiving of yourself. You are adjusting to a new life every day. Cut yourself some slack; you’d likely do so for others. You deserve it too.
  • Make time to do things you enjoy with friends and family.
  • Practice open and honest communication. Take the time to remember that you value those around you and that being in a relationship means taking time to work things out.
  • Reflect on your own feelings and needs so you can better articulate them to loved ones.
  • Be prepared for ups and downs. No relationship is perfect.
  • Don’t be afraid to ask for help when you need it. Therapists can provide help for individuals, couples and families, and may even have groups for people living with chronic illness.

Additional Resources

Information from PHA

Books and Web Links

  • "Building Better Relationships," from Texas Woman's University
  • When Someone You Love Has a Chronic Illness: Hope and Help for Those Providing Support, by T.M. Greenberg (Cedar Fort, 2012)
  • How to be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers, by Toni Bernhard (Wisdom Publications, 2010)

Support Resources

PHA is grateful to Virginia Maril, MPsy, Texas Woman's University, for her contributions and review, and to all the patients and caregivers who shared their experiences to make this resource possible. PH medical review by Landra Slaughter, RN, Pulmonary Hypertension Coordinator at University Hospitals in Cleveland, Ohio.

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

  

The information provided on the PHA website is provided for general information only. It is not intended as legal, medical or other professional advice, and should not be relied upon as a substitute for consultations with qualified professionals who are familiar with your individual needs.

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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.