Coping with PH over the Long Term


“The illness forced me to look at myself and learn what my life was all about.”

“I am 47 years old. I've had PH for 14 years. When I ask myself why do I get to survive? — I feel a pang of guilt.”

“You have good days and you have bad days and I know each moment will pass and I make the most of each.”



Jump to a section:Long-term survivors Jeannette and Karen, with Karen's husband, Jason


How Life Has Changed

Coping with pulmonary hypertension over the long term is like riding a wave of ever-changing emotions. At times, you may feel active and engaged; other times, you may find it hard to get out of bed. The challenges of life everyone faces, such as maintaining a career, nurturing healthy relationships and managing personal finances, become more difficult when you have PH. Meeting the physical limitations and emotional stress of PH day after day, year after year can also be an extraordinary challenge.

Looking Back

Looking back on the period following their diagnosis, many long-term survivors describe painful memories of shock, fear, denial and despair. Liz, an eight-year survivor, recounts, “Over my lunch break, my doctor told me that I probably had a year to live. I had a major presentation at work to lead, so I returned to work to lead the meeting. As I began to speak, I just lost it. I cried and cried.” A 14-year survivor, Mark, describes his initial reaction in this way: “The doctor told me I had PH and I just stared at him. He was confused that I didn’t break down emotionally. I was inside my head thinking about what this diagnosis meant for my children and my wife.” Even years after diagnosis, many PH patients can still vividly recall the period of grief and uncertainty that took place in the months after they learned they had PH.

Most long-term survivors also have a second story to tell: the story of their paths to acceptance. After recovering from the initial shock of diagnosis, most long-term survivors learned over time to manage the highs and lows of life with PH and adjust to what some of them now refer to as their “new normal.” Some people describe experiencing a “waking up” to the things that matter most, like family, nature, spirituality, or giving back to the community. Liz told us, “Those of us who have been diagnosed with PH have the opportunity to take a good hard look at the ‘whys’ of our lives and how we want to really live. For me, this disease has been a gift of sorts. I have been given the opportunity to look deeply at my life and make something out of it.”

The Physical and Emotional Rollercoaster

While acceptance is a fundamentally important step forward, many long-term survivors come to learn that they may never exit the physical and emotional rollercoaster once and for all. Life with chronic illness can be filled with uncertainties, changes and disruptions to your health. Learning to cope with adversity and then begin again … and again and again, is one of the major challenges of coping with PH over the long term.

Jeannette, a 35-year survivor, has weathered many storms living with PH. After receiving her diagnosis, Jeannette wanted to end her life. She was placed in psychiatric care to help her process her emotions and address her depression. She had accepted death as imminent, but her husband was not ready to accept that outcome. Over time, with support from her husband, Jeannette learned coping strategies that allowed her to move forward and live a happy life. Nearly 10 years passed before she experienced another bout of depression. She recalls, “Personal family problems combined with PH caused me so much grief. The stress caused fatigue, increased heart rates and great physical pain.” Jeannette explained that she went into another deep depression, for which she sought professional assistance to help her work through her difficult feelings.

Jeannette has also had frequent hospitalizations due to PH. Recently, she spent nearly 20 days in the hospital with complications due to her illness. “When I was in the hospital I had a meltdown. I was thinking, why am I surviving? Why do I get to live when so many people are passing away from this disease?” she says. Learning to cope with the unexpected physical and emotional upheavals in life, including survivor’s guilt, depression and changes in health status, can be a part of life for long-term survivors.

Loss of Capacity

Like Jeannette, many long-term survivors learn as time goes on that life with PH is full of unexpected changes, even years after diagnosis. As your health fluctuates and your physical limitations shift, you may lose the ability to work, help around the house, or spend time doing things you enjoy. Most of us perceive a strong connection between what we do and who we are, so these types of losses can negatively impact self-image and make you question your sense of purpose.

Many people define their life purpose through their careers, but maintaining a vibrant career may become increasingly difficult when living with PH. After working at a major corporation for more than 12 years, five of them with PH, doctors advised Diane to quit her job as a top account executive. She recalls the months after she left: “After my job was taken away from me, I went into a deep depression — I no longer had an identity. I didn’t know who I was. At first, the break was nice, and then as the time passed, I got scared. I thought I was going to die. I thought to myself, who is going to want me? I have no money, no job, nothing to offer.” 

Diane had already dealt with the grief of diagnosis, yet five years later she was battling another major change to her identity. Having to give up a job, a volunteer commitment, or even a hobby can take a toll on long-term survivors who may have thought that the most difficult losses were behind them. New losses, much like the losses you experienced when you were first diagnosed, can be jarring life events that change the way you think about yourself and the world around you.

Changing Personal Relationships

Living with a chronic illness over the course of many years can also impact relationships with friends and family. Many PH patients have noted the challenges of sustaining friends over the long term. Some people find it difficult to relate to someone who is living with a chronic illness like PH, and friends may come and go. Mark reflects, “The friends I did have stopped coming around over time. I would call them to try to get together and they would make excuses. I just felt they didn’t want to be around me. I basically lost all the friends I had before PH.”

PH patients may also find it frustrating to constantly remind friends and family that they have a physical illness. Joanne, a 14-year survivor, says, “Some people will not believe that you are sick because you don’t appear sick. A former close friend told me that I should just go exercise.” Losing a long-term friend in a time of need — when support is so necessary — can be very difficult.

While some relationships change and fall away, many long-term survivors are quick to point out that the relationships they have maintained have become richer and more meaningful. One woman living with PH for seven years told us, “You appreciate friends and family much more. My husband is there for me in every way, and we’re more of a team than we were before PH.”

Adapting and Moving Forward

Prepare for Change

Pat and Dorothy, two of PHA's founders

While the life lessons of long-term PH patients vary widely, a common theme that emerges is the importance of accepting not just that your life changed when you were diagnosed, but also that your life will continue to change, many times over, for a variety of reasons.

Even after years of relatively stable health, every long-term survivor needs to be prepared for new health challenges. Many PH patients talk about their “new normal” as an empowered term to describe their ability to factor PH into a foundation for a new life — different from their old life, but no less full or meaningful. If you’ve been living with PH for years, you may have to adjust to a new “new normal” on a regular basis. This constant reinvention of self can be draining, and requires an enormous store of resilience, the ability to bounce back in the face of adversity.

By building up resilience to change, many long-term patients find that the peaks and valleys of life with PH become easier to traverse. In Resilience: A Change for the Better, Daryl Conner lays out five characteristics of resilient people. His research indicates that resilient people are:

  • positive — they share the belief that while life is complex, it’s also filled with opportunities
  • focused — they set goals and take steps to meet those goals
  • flexible — they are capable of adapting to new conditions and uncertainty
  • organized — they develop step-by-step action plans to tackle ambiguous situations
  • proactive — they don’t just react to change; they anticipate it and plan for it

One way of cultivating these characteristics is by mapping out flexible action plans to help you manage change more proactively when it finds you. Make a list of some of the unexpected changes you could encounter in the next year (e.g. health deterioration, loss of capacity, financial setback), and think about what you’d do to cope in each of those scenarios. You’ll never be able to predict the future, but even the process of planning for hypothetical change can flex your resiliency muscles.

Jeannette explains how learning to be flexible and proactive has allowed her to live a full life: “I respect the fact that I have PH and I have limitations, but I plan things, I rest … I take charge of my life.” Jeannette understands that life can throw you curve balls, but you must be prepared. “Every single time I go into the hospital, I know I have to start over again. I prepare myself emotionally with a pep talk,” she says.      

Make New Connections

Building resilience is also about surrounding yourself with people and tools that make it easier for you to feel positive, flexible and proactive in your daily life. Liz shares that she was in a deep depression for nearly three years. She had received numerous invitations to join a PH support group, but could not fathom the idea of voluntarily spending time with others living with PH. Liz said, “I finally got over myself and decided to attend a meeting. At the support group, there was a three-year-old girl living with PH, and when I saw her and her family that helped me get over my ‘woe is me’ sadness. That family had it so much harder and they were so upbeat ... the support group was upbeat.”

Liz found that connecting with others was the first step to overcoming her depression. Sharing experiences and exchanging information with her new friends in the PH community also helped her prepare for and manage new changes as they surfaced. Like Liz, many PH patients feel a sense of relief when they meet people who are experiencing similar life challenges due to their illness. If you have yet to explore the PHA community, consider joining a PH support group or connecting with other patients online (see Additional Resources).

Turn to Loved Ones

New connections are important, but the most resilient long-term survivors have a strong, informed support team that also includes friends and family. While Mark may have lost connection with the friends he had before PH, he benefited from the support of his wife, children and siblings. As he recalls, “My wife found my doctor and she has mixed my meds more than 5,000 times by now. She checks on me throughout the day with frequent phone calls. In addition to dealing with me as the individual, she has to provide additional care and she does it all without a complaint.” Mark has his children and siblings accompany him to doctors’ appointments and support group meetings. He also relies on friends from his PH support group and PHA’s online communities for support and information. Having a well-informed and diverse support team enables Mark to navigate the highs and lows of life with PH.

Many long-term survivors recommend finding ways to maintain relationships with friends and family members during both highs and lows to keep your support system intact. This means recognizing that relationships are a two-way street, and your loved ones sometimes need your support too. Joanne cautions PH patients against talking about PH all the time, and she encourages asking friends and family about their well-being too. “Remember, if you are a constant bummer, people will not want to be around you,” she warns. Remembering that everyone has challenges will make it easier to build and sustain balanced relationships.

Find New Purpose

Joanne and friend at the New York Funwalk

According to the National Institutes of Health, as you live with a chronic illness over time you may find strength you never knew you had and recognize that when one door closes, another opens. Diane felt a deep sense of loss when she had to choose between her health and her career. Yet after months of reflection and support from her family, Diane was able to move forward. She started volunteering with the Connecticut Board of Education, working in the office and helping to organize events. Contributing her talents to a worthy cause gave her a new sense of purpose. While Diane was unable to reestablish her old identity, she was able to build a new one by focusing on her interests and abilities and charting a new path.

Other long-term survivors establish new, positive identities by reflecting on what they believe in and carving out a part of each week to work towards a related goal. Some take up community service, others sell jewelry online, and still others throw themselves into writing, painting, or teaching piano. Choosing a goal or mission bigger than yourself can provide forward momentum, even during difficult times.

Coping as a long-term survivor isn’t always easy, but by seeking out support, balance, perspective and things you care about, it is possible to cultivate resilience so you can bounce back from the many challenges you’ll face on your journey. Joanne says, “I try to surround myself with positive people. I love the PHA community, but I also fill my life with other things like books, cooking, spending time with my family and setting personal goals. I am not PH, that’s just something I have.”

Quick Tips

  • Allow for the highs and lows. It’s normal to experience periods of sadness and depression when living with a chronic illness over the long term, but they don’t last forever. Give yourself time to grieve, reflect and then move forward. 
  • Prepare for change. Make a list of unexpected changes that could surface in the next year, and map out an action plan for managing each possibility.
  • Be flexible. Remember that you’ll never be able to plan for every possibility. Expect the unexpected.
  • Get organized. Use PHA’s Empowered Patient Online Toolkit to organize your medical paperwork, prepare yourself for emergencies, and help your medical team provide the best care possible.
  • Educate your friends and family. Teach loved ones about your illness to build a strong PH support network, made up of people who understand your needs. Invite your friends and family to your doctors’ appointments and support group meetings.
  • Connect with others living with PH. Connect with other people living with PH through local support group meetings, Facebook and PHA email groups.
  • Reflect on your purpose. Choosing a goal or mission bigger than yourself provides forward momentum, even during difficult times. Find a way to contribute your time and energy to something you believe in, whether it’s community service, a part-time craft business, or a creative pursuit of your own devising.
  • Be real. Maintaining a positive outlook is one way many patients try to approach living with a chronic illness. At the same time, it’s important to acknowledge that life with PH can be difficult. and it’s okay to be sad or even angry at times. Be real about how you feel.
  • Find an outlet. Many people find solace in meditation, faith, humor, writing, hobbies and more. Find an outlet that you enjoy and that provides relief from life with PH.
  • If it gets to be too difficult, seek professional help. Talk to your doctors to get a list of mental health professionals in your area.

Additional Resources

Information from PHA

Books and Web Links

Support for PH Patients

Medical review by Tania Von Visger, APRN, MS, CNS, CCNS, PCCN, The Ohio State University Medical Center.

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

 

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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.