Adjusting to a Pulmonary Hypertension (PH) Diagnosis

Allyson Rupp, LCSW, Adult Pulmonary Hypertension Program, Stanford Medicine

There are many avenues for coping with a PH diagnosis. 

Summer 2016

A PH diagnosis can strike anyone at any time, and no one can be prepared immediately to handle all aspects of such a difficult condition.  However, there are definitely things that everyone can do to minimize the impact of distress, isolation, and varying emotional responses that come along with this diagnosis.

Recognize that being upset, sad, frightened, angry, disappointed, numb, and other emotions are usually normal, expected responses to rather abnormal and unexpected news. How you approach these feelings influences your overall experience and adjustment.  

  1. Be aware and identify your own signs of depression, including prolonged periods of sadness, frequent tearfulness, poor motivation, lack of interest in activities you typically enjoy, changes in sleep (sleeping more or much less than normal), and appetite changes. Discuss any of these issues with your clinical team, primary care physician, and/ or a mental health provider.  There may be medications for controlling symptoms. Seeing a therapist, psychologist, or counselor is a constructive way to talk about how you feel and learn how you reduce the impact of these feelings on how you function and enjoy life.
  2. Seek immediate help if you find yourself feeling hopeless or wanting to harm yourself or others. Your local emergency room or Emergency Medical Services can get you the help you need quickly.

Locate a support group in your community or through your PH center, and participate. Peer support is a valuable resource that demonstrates that you are not alone. Others with PH may have had similar experiences, feelings, and triumphs with PH. They may have strategies you haven’t tried, perspective that is helpful, and friendships you will cherish. You may have important strengths to share with others, as well, and your reaching out to others can renew confidence in yourself and remind you that you can get through challenging circumstances.

Explore new hobbies. If your disease has hindered your ability to participate in active tasks you once enjoyed, adopt new ones with a “flavor” of the old. For instance, if you PLAYED baseball, try to coach a team. If you enjoyed running, enroll in a charity run/ walk (and do the walking part), and fundraise for a cause, or volunteer at the events. If you’re missing social aspects and networking associated with work, explore how you can serve on an advisory board, or a planning committee, related to your profession. Or, discover new interests and passions in your community: book clubs, sewing groups, advocacy groups, community organizations, your children’s or grandchildren’s PTA or school functions, etc… 

Have friends/ contacts un-related to the PH community, as well as some within it. Some people may find themselves immersed in an environment where PH is all that is spoken about, and taking a break to discuss and do “un-PH” things is just as necessary as learning all you can about and having people who can relate to PH. 

If you are frustrated with systems (disability, travel protocols, etc) that appear to be disadvantaging to people with PH, get involved politically. There are often initiatives that directly impact the rights, benefits and quality of lives of people with PH, and campaigns around awareness and advocacy with your local representatives is always needed. Check out the PHA’s website for up-to-date issues in which you could spark a new passion and be instrumental in bettering for yourself and others.

Take vacations. Whether short and local or lengthy and at a distance from home, taking a break from the stressors of life and from managing a PH diagnosis is always important. Go to a place where you feel safe, comfortable, and can truly relax, if even for just a day, an escape is necessary. You will find that your caregivers and family also benefit from the opportunity to take a break from responsibilities and the “norms” of life. 

Be organized. Keeping your healthcare files up to date and easily accessible may minimize the stress that could occur at the time of a crisis, and give you peace of mind that everything is handled in the event of an unforeseen emergency. 

Maintain a routine. It’s very common to fall victim to boredom and depression when the routines that you are used to are no longer available. If you have been unable to work due to disability, finding a routine can be a challenge, but research shows that maintaining consistent sleep-wake cycles, and remaining involved in a regimen can uplift spirits, reduce depression and anxiety, and maintain general health. Try to wake up at and get moving at the same time every day. If you don’t have plans outside of the house, get up and get dressed, anyway. Make a list at the start of each week of things that need to be done, and tackle a different one each day. Have a friend or relative join you for a daily or weekly “date;” something that you can look forward to and enjoy. 

There are so many avenues for coping, and these only detail a few. You have obviously been doing what you can to become informed and help yourself, so keep it up! Involve your treatment team in discussion of how you are doing, and seek input and suggestions where you are struggling. This is a lifelong endeavor, and your interests and abilities will change. Finding meaning and purpose and ENJOYING yourself is always a sensible direction to err.

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