Coping When You’re Newly Diagnosed
“When I was diagnosed with PH, I cried thinking I would never know my future grandchildren.”
“It hit us all hard. My husband was planning retirement, we were about to book the trip of a lifetime for three months overseas, but I was told travel was out of the question. Our world was turned upside down in one minute.”
“I had a lot of time to think while I was in the hospital; I was angry, sad, frustrated, and I guess even relieved to some extent. I had been telling doctors for years that I wasn’t feeling right and finally I knew why.”
Jump to a section:
- What to Expect
- Adapting and Moving Forward
- Additional Resources
No one plans to get sick. 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.
One thing that most newly diagnosed patients do have in common is that even before they were diagnosed, they were experiencing breathlessness and other symptoms of PH. One patient told us, “In the beginning, it was very difficult. I couldn’t walk very far without getting short of breath. I couldn’t bend over to tie my child’s shoe without getting dizzy. My heart would sometimes race dangerously fast if I overexerted myself. I was so fatigued that I would fall asleep at the drop of a hat.” Whether your symptoms are mild or severe, it’s likely that you have been dealing with physical limitations, exhaustion and a compromised quality of life for some time. Many patients find that these physical symptoms can take a serious mental and emotional toll. Some find that breathlessness can lead to feelings of anxiety and panic. Others report that their inability to keep physical pace with friends, family and co-workers leaves them feeling frustrated, left-out and lonely.
Another thing that almost everyone with PH has in common is that by the time they’re diagnosed, they’ve been through the medical ringer. One patient said, “I went to six doctors and had been living with symptoms for 15 years before being diagnosed. The most difficult thing about trying to get my diagnosis was people truly believed I pretended to be ill just to gain attention.” 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.
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. In the beginning, learning that you have a chronic illness can be profoundly painful. One woman described the time following her PH diagnosis as a time filled with difficult losses: “The life I once had was taken away from me. I lost my old life, my friends, my job, my car, my home, and my dignity.” Whatever losses you may face, it’s normal to need time to come to terms with them and what they mean to you.
For many patients, this healing process is similar to the grieving process you experience when a loved one dies. Instead of grieving for 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.
The grieving process typically unfolds in stages. In 1969, psychiatrist Elisabeth Kübler-Ross identified five key stages individuals may experience as they process grief: denial, anger, bargaining, depression and acceptance. Not everyone experiences all of these stages or encounters them precisely in this order. How you grieve and for how long depends on many factors, including your personality, support system, culture, coping style, faith, life experience, and the severity of your illness. Grief is a profoundly individual process that everyone experiences in their own way and in their own time. While some may only need to grieve for weeks, others may need a year or more. Read on to learn more about some of the ways you may find yourself grieving, struggling and ultimately surviving when you’re first diagnosed.
The shock of learning you have PH can be overwhelming. Cancer physician Michael Lerner compares being diagnosed with a serious chronic illness to parachuting into a war zone behind enemy lines. You are surrounded by potentially life threatening danger in completely unfamiliar territory. Your mind may go into “fight or flight” mode, your body’s natural response to extreme stress. When you’re feeling threatened, your body sets in motion a series of physiological responses, including increased adrenaline flow, heart rate, breathing rate and blood pressure, to improve your chances of escaping danger. You may have experienced some of these responses when the doctor first told you that you had PH. 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. They go through the motions of daily life, but aren’t ready to seek out more information about the disease or tell friends and family members what’s going on. This “fog” is their brain’s way of protecting them from too much pain and anxiety all at once. Combat veterans, who encounter intense stress on the front-line, are often surprised to discover their wounds following a battle. Their denial allows them to keep moving and carry out their missions. 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. See Additional Resources to learn more about finding a doctor to treat your PH.
With time, you may find that the “fog” or numbness you felt immediately following your diagnosis will give 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. You may question, “Why me?” or ask, “Who’s to blame?” Keisha, diagnosed in 2006, said, “I had dreams for my life. I wanted to jump start my career in a new city, get married, and have kids. After my visit to the doctor, I felt that all of my aspirations were being taken away from me. So I got angry, angry at everyone, angry with the world, angry with God. I felt I was a walking time bomb just waiting to explode.”
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. According to Elisabeth Kübler-Ross and David Kessler in their joint work, On Grief and Grieving, “At first grief feels like being lost at sea: no connection to anything. Then you get angry at someone … Suddenly you have a structure — your anger toward them. The anger becomes a bridge over the open sea, a connection from you to them. It is something to hold onto; and a connection made from the strength of anger feels better than nothing.” Recognizing the role of anger in your grieving process can make it easier to eventually move past that anger towards acceptance.
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.
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. Debra, diagnosed in 2006, told us, “I was so depressed when I was diagnosed all I did was cry all the time.” Thousands upon thousands of PH patients have dealt with similar feelings of despair. Depression, while deeply painful, is a normal reaction to illness and a healthy part of the healing process.
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. Manifested over the long-term, depression is a serious illness that requires professional assistance to overcome. Learn more
For most people with PH, the fear, anxiety, sadness, isolation and other strong feelings that emerge in response to diagnosis will begin to lessen over time. Once on PH-specific medications, many patients find that their physical symptoms lessen, and the “fog” they experienced post-diagnosis starts to lift. As you become more functional, you may find yourself more capable of seeking realistic solutions to new challenges. 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. Given the loss, suffering and disruption that can accompany diagnosis, 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.
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. While physical healing has an external focus, with the intention of improving your physical symptoms and slowing your disease progression, healing can also be an internal process in which you work through your grief to rediscover a sense of meaning and purpose in your life. 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.
What follows are some practical tips and coping strategies that have helped other newly diagnosed patients move forward. This is not a list of shoulds but a list of suggestions. 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. By doing so you send a message to yourself that doing something is enough to begin.
Medical treatment is an important and time-sensitive component of the healing process, especially for PH patients. Ken, a caregiver in New York, recommends, “Seek out a PH center … this is no common cold you are dealing with. Go find the best PH doctor, even if it means traveling!” 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. In the words of PH patient Shana, “The right medication can change your life!” 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 to cut out bad habits for good.
- 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.
- 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 any 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.
Social healing can begin as soon as you’re diagnosed. Ask a spouse, sibling, parent or close friend to accompany you to medical appointments. Remember that you may be operating in “fight or flight” mode for the days and weeks following diagnosis, which means all of your decisions are about survival with little thought for details. This can make it difficult to pay attention or process information. With that in mind, 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. One patient recommends, “Let your friends and family help when they offer. They love you and are probably feeling helpless. With PH, you truly find out who your precious angels on earth are!” Consider asking friends and family members to run errands, drive you to appointments, prepare meals and help you with household chores. It’s usually during the challenging times we come to see and appreciate all the support and love we have in our lives. 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. Ruth Ann advises other PH patients, “Join a support group! The knowledge you will gain from others is tremendous. Take you, your caregivers and your family.” Indeed, many new patients credit support groups for helping them feel less alone and overwhelmed. 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. Consider visiting PHA’s website for online connections or joining a PH support group to tap into the wisdom of other patients, many of whom have been living with this disease for many years (see Additional Resources).
A lot of the healing to be done as you move forward will happen in the realm of your feelings and thoughts. Being diagnosed with PH can fundamentally challenge your belief system and force you to confront your ideas about illness, suffering and how the world works. Paying attention to your feelings and thoughts as they surface can make it easier to acknowledge the various ways in which PH is affecting your outlook and help you regain influence over your daily life.
Here are some suggestions to help you begin to acknowledge and shape your mental and emotional responses to PH-related challenges:
- Practice self-compassion. Some newly diagnosed patients believe they did something wrong to cause this illness. While it may be difficult to accept at first, no one deserves to have PH, even if you developed the disease due to diet pills or other drugs. 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. Focus on what’s in front of you rather than ruminating on what you were capable of doing last year or worrying about where you’ll be next year. 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. One patient told us that before she was diagnosed, she wasn’t close with her family. Her parents had both passed away before she graduated from high school, and she saw her brother only twice a year. When she learned she had PH, she found herself on the phone with her brother several times a week. They spoke about the years immediately following their mother’s death, and connected over their shared grief in a way they hadn’t had the opportunity or courage to do as teenagers. 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. Pain is made up only of various physical sensations like pinching, sticking, heat and pressure. But when anxiety in the mind converts pain into thoughts (“This is going to kill me” or “It’s never going to stop”), pain can begin to take on new meaning, often converting physical sensations into mental suffering. Psychotherapists believe that assigning negative meaning to your physical pain can actually make the pain worse. 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 if it means not accepting how you sincerely feel in the moment. 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. One patient, Erica, reminds us that acknowledging difficult feelings can build strength and perseverance: “A healthy mind is as important as a healthy body. Don’t try to be a superhero. It’s ok to break down, and when you do, just pick yourself back up. Remember that every day is a fight you’re capable of winning.”
- 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 for good therapists in your area. Some therapists specialize in chronic illness and health-related depression, areas of expertise that may prove particularly helpful as you adjust to life with PH.
Many PH patients also turn to spiritual practice to cope with their diagnosis. For some, this means attending church, temple or mosque. But spirituality has many meanings. Generally speaking, 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. Liz, a PH patient in North Carolina, says, “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.”
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.
Information from PHA
- Resources for new patients
- Find a Doctor Directory
- Webinars and videos for new patients
- Pulmonary Hypertension: A Patient’s Survival Guide, by Gail Boyer Hayes (4th Edition, July 2011)
Books and Web Links
- The Center for Contemplative Mind in Society
- On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Elisabeth Kübler-Ross and David Kessler (Scribner, 2005)
- When Things Fall Apart: Heart Advice for Difficult Times, Pema Chodron (Shambhala, 2005)
- PHA’s Patient-to-Patient Support Line: 800-748-7274
- PH Email Mentors
- Local and virtual support groups
By Charles Leighton, LCSW, CGP, psychotherapist and stress management educator. Medical review by Landra Slaughter, RN, University Hospitals, Cleveland, Ohio.