What to Expect
Learning that you have pulmonary hypertension can turn your whole world upside down. Every new patient, when learning that they have PH, responds differently. You may feel angry, frightened, lonely, frustrated, worried, numb, or some combination of these feelings. It’s important to remember that there are no right or wrong reactions. Give yourself the space to feel and respond to your diagnosis without judgment so you can begin to move forward.
Before they were diagnosed, most newly diagnosed patients experienced breathlessness and other symptoms of PH. Almost everyone with PH has been through the medical ringer by the time they’re diagnosed.
Even if you’re one of the lucky few diagnosed in a matter of months, chances are good that you’ve donned your fair share of hospital gowns and filled out a lifetime’s worth of complicated medical paperwork.
Many patients were feeling confused and overwhelmed by medical jargon long before they ever heard the words “pulmonary hypertension.” After all the appointments and tests, some people report feeling a sense of relief when they finally learned they had PH. One patient said, “I was thankful to finally know what was wrong with me. Now I knew what we were dealing with.”
While your diagnosis marks an ending, it also marks a beginning. Finding a PH-treating doctor, getting on PH-specific treatment, making accommodations for PH in your everyday life, and acknowledging your fears and feelings are all parts of a journey that begins now.
Grieving Your Losses
While learning you have PH can bring relief, it can also disrupt your life, forcing you to put goals and dreams on hold, and changing how you think about yourself and the world around you. For many patients, this healing process is similar to the grieving process you experience when a loved one dies. Instead of grieving an external loss, a PH patient may grieve for a part of his or her identity that feels lost, for a body that no longer does what it once could, for a life that no longer feels predictable or safe, or for a world view that is no longer sufficient to explain your daily life. Feelings of loss can be frightening and overwhelming, and many people who are diagnosed with PH struggle to find balance and direction in the weeks and months following diagnosis.
Shock and Denial
The shock of learning you have PH can be overwhelming. For many newly diagnosed patients, the body and brain’s natural reactions to stress are the forces that propel them forward in the days following diagnosis.
Everyone deals with these emotional and physiological responses differently. Some people describe feeling consumed with their diagnosis, unable to talk or think about anything else. Others describe “walking around in a fog” after learning they have PH. For many people who have just been diagnosed with PH, initial denial gives them a buffer to deal with important tasks and priorities before turning their attention to their illness and sorting through the impact of PH on their lives.
While denial can play a useful role in the grieving process, the apathy associated with prolonged shock and denial can sometimes prevent patients from seeking timely access to life-saving medical care. No matter where you are on your journey, it’s important to see a PH-treating physician and get on PH-specific medication as soon as possible after your diagnosis. PH-specific therapies can help relieve symptoms, improve your quality of life, slow disease progression, and play a crucial role in helping you adjust to life with PH, both physically and mentally.
Frustration and Anger
With time, you may find that the “fog” or numbness you felt immediately following your diagnosis gives way to emotional pain. Pain often presents itself as anger. At some point in their journeys, many PH patients report feeling anger towards strangers, loved ones, doctors or just life itself.
Anger can take many forms. You might resent people on the street who appear healthy and carefree. You might experience frustration with the medical system for misdiagnoses and painful tests. You might even find yourself harboring feelings of anger and disappointment with close friends and family members who don’t respond to your illness in ways that feel supportive. While anger can be uncomfortable and difficult, it can serve an important function in your grieving process. Recognizing the role of anger in your grieving process can make it easier to eventually move past that anger towards acceptance.
Guilt and Bargaining
Guilt is another common feeling among newly diagnosed patients. Some people feel guilty about getting sick, about not taking better care of themselves or going to the doctor sooner. Others feel responsible for imposing new responsibilities, financial obligations and stress on family members and friends. This sense of responsibility, while misplaced, offers the comforting illusion that patients have or had some direct control over their illness.
Some people go through a bargaining stage to explore these feelings of guilt without having to directly confront or engage with them. They find themselves bargaining with the past: “What if I hadn’t taken so long to go to the doctor?” or, “If only I hadn’t taken Fen-Phen, I wouldn’t be dealing with this today.” “If only…” and “What if…” statements may offer a temporary sense of command to individuals whose illness has stripped them of power and control.
Sadness, Fear and Depression
At some point in the process of adjusting to life after diagnosis, it’s common to experience deep sadness. In this phase, you may wrestle with feelings of emptiness, loss and pain head-on. You may worry about facing daily life with PH symptoms or going out into the world with an oxygen tank and new medications in tow. You may be afraid for your future or the future of your family. You may feel isolated and alone as you come to terms with living with an uncommon, life-changing illness.
In some cases, intense and enduring reactions to a diagnosis with PH can turn into major depression. Someone suffering from major depression may feel afraid, isolated, hopeless, anxious, powerless, or incapable of carrying out everyday tasks for weeks and months at a time. Depression is a serious illness that requires professional assistance to overcome. Learn more
For most people with PH, the strong feelings that emerge in response to diagnosis lessen over time. Many patients find that, after starting PH-specific medications, their physical symptoms lessen, and the “fog” they experienced post-diagnosis starts to lift. Over time, most PH patients are once again capable of tackling practical and financial problems and developing a daily routine in which PH is a part of life but not the defining factor.
Acceptance does not mean you will feel better immediately. You may never return to the more carefree version of yourself you were before PH. Yet most people living with PH do find their way forward. Many patients get to the point where they are ready to begin making new plans for the future and, over time, reawaken a sense of joy in their daily lives.
Adapting and Moving Forward
No matter how intense and enduring the grieving process, every PH patient is capable of healing and moving forward in the months and years following diagnosis. Medical treatment is just one component of healing. Healing literally means “to make whole,” and refers to the process of exploring and accepting all dimensions of your physical, emotional, mental, social and spiritual self. Regardless of how your medical treatment is progressing, you can still heal.
Here are some practical tips and coping strategies that have helped other newly diagnosed patients. Use only what works for you and feels right. Do what you can, but don’t create unrealistic expectations. A diagnosis with PH can be physically and emotionally draining, and it’s important that you let yourself grow into your choices slowly.
Medical treatment is an important and time-sensitive component of the healing process, especially for PH patients. PHA’s Scientific Leadership Council encourages everyone who’s been diagnosed with pulmonary hypertension to seek immediate medical treatment from a PH-treating physician who can prescribe PH-specific therapy. Getting on treatment can make a huge difference in how you feel, both physically and mentally. Learn more about finding a PH-treating doctor
In addition to seeking PH-specific treatment, there are steps you can take to prioritize your physical health by relaxing, energizing, strengthening and nourishing your body. Here are a few places to begin:
- Be mindful of what you put in your body. Eat nutritious, low-sodium meals every day, and do your best to avoid things you know are bad for you. Drinking, smoking and binging on junk food may feel good in the moment, but these short-term fixes do long-term damage to your health, especially if you have PH. Talk to your doctor to make a plan.
- Get lots of rest. Doctors recommend at least eight hours of sleep a night, and PH patients may need even more than that. Don’t feel guilty about taking naps when you need them.
- Get moving. Low-impact resistance training and light to moderate aerobic exercise such as walking or swimming can increase strength and endurance. Just 20 minutes of exercise a day can benefit your mind, body and outlook. Talk to your PH medical team to develop an exercise plan that works for you. Link: https://phassociation.org/patients/living-with-ph/exercise-and-ph/
- De-stress. Consider setting aside 30 minutes a day for chair yoga, meditation, aromatherapy, massage, or just some time to yourself to unwind. If quiet time isn’t your thing, make time for activities that make you feel good, like funny movies or coffee dates with friends.
While healing is an internal process, it doesn’t need to be a solitary experience. It’s important to reach out and ask for help. Talk to your family, friends, medical team, and other people living with PH. Research indicates that people with strong support systems often have better clinical outcomes because they’re less stressed, isolated and depressed than people who don’t have family and friends they can count on.
Many patients benefit from having a close friend or family member with them at all of their early appointments as an extra set of eyes and ears. It can also be enormously comforting to have someone to hold your hand, chat with in the waiting room, and decompress with on the drive home.
As time goes on, it can be helpful to build a team of loved ones you can count on for physical and emotional support. It’s likely that your illness will have a profound effect on your loved ones, and they’ll appreciate the opportunity to contribute during your hour of need. Consider asking friends and family members to run errands, drive you to appointments, prepare meals and help you with household chores. By reaching out to friends and family and talking about the ways in which PH is affecting each of you, it’s possible to empathize and connect in new ways.
While a diagnosis with PH has the potential to strengthen your existing relationships, you might also find that you need new sources of support to cope with the many ups and downs in the months following diagnosis. Many newly diagnosed patients find it enormously helpful to connect with other people living with PH through PHA’s Email Mentor Program, online communities, or local support groups. Support groups provide a safe place to talk about and process feelings, collect information on managing day-to-day, and share stories. Other PH patients understand what it’s like to grieve for an old way of life, adjust to complicated medications, and navigate shifting personal relationships. Visit PHA’s website to find a support group in your area.
Mental and Emotional Healing
A lot of the healing to be done as you move forward will happen in the realm of your feelings and thoughts. Here are some suggestions to help you begin to acknowledge and shape your mental and emotional responses to PH-related challenges:
- Practice self-compassion. Unchecked self-blame can lead to depression and chronic anxiety, while higher levels of self-compassion have been linked to happiness, optimism and curiosity. Consider choosing a phrase to repeat to yourself when your inner voice begins to criticize or blame. Simple, kind sentiments like “May I be gentle with myself in this moment” or “May I give myself the compassion that I need” can serve as reminders that you deserve the same love and understanding from yourself that you give to others.
- Accept the present moment. The many changes that accompany a diagnosis of PH may be too overwhelming to accept all at once. Some newly diagnosed patients find it’s more manageable to concentrate on accepting just one moment at a time. Showing up for the present moment and appreciating the challenges and joys of your immediate situation can help you function in the face of uncertainty and rediscover the pleasures of everyday life.
- Turn challenges into opportunities. Learning you have a chronic illness can raise difficult questions and feelings. While some of these feelings may be new and in direct response to PH, it’s also common for big life changes to stir up existing issues. Keep in mind that this is normal. Over time, many patients come to see their diagnosis as a turning point, as a catalyst for positive change, such as reconnecting with family and friends. When you stay open to the possibility for personal growth during difficult times, it’s possible to zero in on the things you value most.
- Know pain from suffering. Pain is a part of life, especially when you’re living with a chronic illness. PH patients sometimes experience site pain due to intravenous medications, pain associated with related conditions, or other types of physical discomfort related to PH. One strategy for coping with physical discomfort is to begin thinking of pain as no more and no less than a series of sensory experiences. Focusing on your physical sensations rather than worrying about how pain might progress can make it easier to take pain at face value and reduce feelings of apprehension and resentment.
- Beware the myth of the positive attitude. While there are benefits to “looking on the bright side,” putting pressure on yourself to always keep a positive attitude can be counterproductive. Give yourself permission to experience the full range of your feelings. In many cases, only by acknowledging our pain, disappointment and suffering are we able to grieve our losses and move forward with renewed purpose.
- Remember that you are more than your illness. PH may take up a significant amount of your time, but it doesn’t have to define you. Members of the PH community like to remind one another, “You have the disease; the disease doesn’t have you!” Life is still what you make of it. Take the time to do things you enjoy and stay up-to-date on news, causes and interests that have nothing to do with PH.
- Talk to a therapist. When difficult feelings begin to interfere with everyday functioning (sleeping, eating, working or socializing), that’s a good indicator that it’s time to seek the help of a mental health professional. Mental health professionals use therapy, lifestyle changes and sometimes medication to help people identify and overcome difficult issues and negative thinking patterns. Ask your PH doctor, support group members, friends and insurance company for recommendations..
Many PH patients also turn to spiritual practice to cope with their diagnosis. For some, this means attending a place of worship. But spirituality has many meanings. You don’t need to be religious or have a special vocabulary to be spiritual. Spirituality is about seeking meaning and purpose in your existence.
Reflecting on your core beliefs can be one way to reestablish your sense of self and find new purpose after a diagnosis with PH. Many spiritual practices are about deepening your awareness and acceptance of whatever is happening in the present moment. Practices such as meditation, prayer and yoga can quiet the mind and make it easier to take every moment as it comes. You may find that by reflecting on your inner-self and your place in the world around you, it becomes easier to cope with the complexity of daily life and adapt to rapid changes. The Center for Contemplative Mind in Society recommends a range of activities to encourage contemplation and spiritual healing. Here are just a few suggestions:
- Stillness practices, such as sitting in silence or meditation.
- Movement practices, such as walking or yoga.
- Creativity practices, such as journaling, singing or sketching.
- Activist practices, such as volunteering or community service work.
- Devotion practices, such as prayer or repeating mantras.
- Ritual practices, including worship services and cultural traditions.
- Relational practices, such as listening or storytelling.
Once you find coping strategies that work for you, create a routine and put your daily practices on your calendar. Try to do these activities on an ongoing basis, as routine creates healthy habits and a healthy lifestyle that can become second nature over time. Coping and healing in the months and years after diagnosis can be a long and difficult journey, but by tending to your physical, social, mental, emotional and spiritual needs, you’ll be able to put one foot in front of the other and rediscover a life worth living. By seeking medical treatment and acknowledging and tending to your needs, it’s possible to move forward with a renewed sense of passion and purpose.