“Stress as a patient with a chronic disease is different from the stress I enjoyed as an architect.”
“I divorced my husband because I was tired of defending myself about not being able to have children. My pressures were increasing from the stress of my relationship with him, and I had to go up on my medicine.”
“I have found that stress will aggravate my sickness and symptoms. Unfortunately, stress is a major factor in my life. Today, I am trying to minimize the amount of stress I feel and improve the way I handle it.”
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What to Expect
Stress is a part of the human experience. It accompanies life changes happy and sad, from the excitement of planning a wedding to the devastation of losing a loved one. We all experience some levels of stress in our day-to-day lives. However, when combined with a chronic illness like pulmonary hypertension, stress can be especially difficult to manage. Without proper attention, stress has the potential to take a toll on your physical health and quality of life.
For some people living with pulmonary hypertension, PH-related stress begins before diagnosis. Some report feeling stress related to their breathlessness and fatigue, which can make it difficult to complete ordinary tasks like running errands or cooking dinner. Others experience years of misdiagnoses and the uncertainty of knowing that something is wrong, but not knowing what. Still others deal with the stress that comes from friends and family members who may not believe they are truly sick.
Upon diagnosis, patients experience stress associated with the range of challenges that come with living with a chronic illness. Some of these challenges are directly related to their physical health and disease management, as they adjust to unique life-sustaining medications and, in some cases, supplemental oxygen. While physicians and nurses at PH centers and specialty pharmacies are available to answer questions, the onslaught of information can be overwhelming for patients without any prior medical background. Some of the unique medications used to treat PH require preparation before administration, which can be burdensome for patients who are accustomed to more common medications taken by mouth, drops, sprays or topically.
The cost of medication may also cause stress, especially for the uninsured or underinsured. Between treatment costs, hospital bills, and a sometimes compromised capacity for full-time work, a number of patients report experiencing major stress around bills, insurance, and their families’ long-term financial stability. While very few patients actually pay for their medications out-of-pocket thanks to Patient Assistance Programs (PAP), sorting through all the questions and paperwork can take a lot of time and energy.
Many patients also experience stress related to household and family responsibilities given their physical symptoms. Alex, a mother of three, recounted the stress she felt when her former husband was deployed to Iraq: “When I was first diagnosed, my PH doctor warned my former husband not to let me worry or stress over anything, including bills. Stress and worry are especially difficult for me as it increases my heart rate as well as my pulmonary artery pressures. I had to take on all the responsibilities my husband had previously handled. Managing the check book for me was mentally trying, but dealing with the day-to-day activities of running our home was most trying overall.”
This host of new challenges can make it more difficult for people with PH to continue to juggle old causes of stress, like challenging relationships or work pressures. Doug worked for many years in a high-stress profession. He thrived on meeting tight deadlines, satisfying clients’ needs and facing many other challenges involved in running an architecture firm. However, his capacity for handling stress changed upon being diagnosed with PH. In order to manage his levels of stress and his overall heath, Doug ultimately had to quit his career as an architect. Others report having to make similar sacrifices to find time to rest and deal with PH-related responsibilities, from cutting ties with less-than-supportive friends to cutting back on hobbies that had once been sources of “good stress,” like volunteering for time-consuming committees.
Complicating matters further, the activities you’ve used to cope with stress in the past may no longer be available to you after you’re diagnosed. Traditional forms of exercise and other physical stress-busters, such as deep-breathing exercises, are out of the question for some patients. Doug shared, “Before I got sick I went to the gym three to four times a week. I released so much stress through physical exercise.” Post-diagnosis, Doug was unable to maintain his rigorous workout regimen, causing him additional anxiety. Others find that they are unable to turn to old support networks to de-stress because friends and family can’t understand the magnitude of what they’re dealing with. Joanne, a patient in New York, told us, “I’ve lost friends due to diagnosis because they were uncomfortable with my illness.” With old support systems out of the picture, bouncing back after a stressful day can feel more difficult than ever.
“Chronic disease is an internal stress with so many unknowns and what you do with them can become a crisis,” said Doug. Developing new methods of coping is essential to adapting and moving forward. Researchers at Mental Health America say that, over time, stress can weaken the body’s ability to fight disease, decrease already diminished energy levels and raise the risk of depression. Managing your stress is very important for your physical health and your overall quality of life.
Adapting and Moving Forward
The first step toward moving forward is recognizing that your life has changed and that the way you handle stress may have to change as well. Most people living with PH learn to manage stress better over time by developing coping strategies that tend to their mind, body and spirit. What follows are a variety of coping methods that have worked for others. Stress is very subjective; what causes stress in one person may bring joy and pleasure to another. What relieves stress also differs from person to person. Don’t be afraid to explore a few stress relief techniques before settling into a routine that fits for you and your situation.
Expect the Unexpected
It may seem counter-intuitive, but one way of coping with stress is by learning to accept its inevitable presence in your life. Even the most laid-back among us encounter occasional frustrations. Rather than trying to eliminate stress entirely, accept that you’ll face some unexpected hurdles every day. Some of these challenges may be everyday annoyances and some may be much larger obstacles. However, if you can adjust your thinking to acknowledge that challenges are bound to present themselves, it’s easier to interpret potentially stressful situations as challenges to be overcome or changes to be accepted. Learning to accept those things you can control and to let go of those that are outside of your control can make it easier to move forward when things break down, fall apart, or deviate from schedule.
Consider taking stock of the things in your life that cause you stress. You can even make a list of common stressors you experience: work commitments, a particular relationship, having only 20 minutes to grab lunch during the day, etc. Be as specific as you can. Then review the list and determine which stressors are within your control and which are outside of your control. Underline everything within your control. Think about how you can adjust all of the underlined items to reduce your stress. While you may not be able to control a deadline at work, you can control how often you speak to an emotionally draining acquaintance. Then go a little deeper — maybe there are pieces of items beyond your control that you can influence. For example, while you might only have 20 minutes for lunch, is there something you could pack in your lunch that you would look forward to? Finding creative and simple solutions can make a difference in the amount of stress you experience on a daily basis.
Trim Down Your To-Do List
Make a personal commitment to treat yourself well by setting realistic goals and prioritizing tasks that truly matter to you. After a PH diagnosis, it’s important to adjust your goals to make sure they’re realistic. Many people hold themselves to high standards, and not reaching a goal can leave them feeling discouraged. Be forgiving of yourself in regard to meeting self-imposed expectations. Imagine a close friend in your position. Would you chastise her for not accomplishing everything on her to-do list or would you understand that she is working hard to do the best she can? Extend this same kindness to yourself.
Consider prioritizing the tasks in your life. Make a list of everything you want to do and rank the activities in order of importance. Ask yourself if the items at the bottom of the list are truly necessary. If they aren’t, cross them off the list. If they are, recognize they are not as important as other things on the list and allow yourself some extra time to get them done. Prioritizing helps you cut back on unnecessary stress and focus on activities that make your life more meaningful. One patient recommended setting just one main priority per day, and adjusting your list as necessary based on your energy level.
Part of adjusting goals and prioritizing tasks can include having to tell people “no” sometimes. This is easier for some to do than others. If saying no is something you have trouble with, take some time to understand why. Are you afraid of letting people down? Are you having a hard time accepting a slower pace of life post-diagnosis? Do you feel it’s unfair that you can’t do everything you used to? Identifying what is behind your inability to say no may help you develop realistic strategies for asserting yourself. Saying no takes practice, but those close to you will understand if you communicate directly and honestly with them. If a friend or colleague asks you to do something that you feel isn’t currently within your bandwidth, don’t be afraid to politely decline.
Schedule in Stress Relief
It might seem a little strange at first that we would need to schedule time for stress relief, but when you think of all the requirements of your daily life, finding time to relax is usually one of the items that falls quickly to the bottom of the list. This is why it makes sense to schedule specific time for it. A clear mind can help alleviate stress, so consider incorporating relaxation techniques into your daily routine. Taking a few moments out of your day to meditate or reflect in a quiet place can help you get in touch with your thoughts. Some people enjoy gardening, a nice nap, yoga, or spending time with a loved one. Think about what leaves you relaxed, but also recharged. Energy is finite, as anyone living with PH can tell you. We spend lots of time devoting energy towards other people. What can you do that directs energy towards you and helps you feel rejuvenated?
Mental exercises such as crossword puzzles or Sudoku can keep your mind sharp. Many patients also find that writing in a journal every evening can reduce stress by providing a safe venue to explore their feelings. Jotting down life events as they happen can make it easier to acknowledge your challenges and reflect on your options. Over time, you may find patterns in how you approach difficult situations and develop methods for reducing future conflicts.
Be Good to Your Body
Remember, reducing stress means being proactive about things in your life you can control. To an extent, your physical health is one of those things, even though there are major pieces of your physical health you can’t control or predict. Cultivating habits that directly affect and support your physical health can do wonders for reducing mental stress. Avoid smoking, excessive drinking and binging on junk food. Eat filling, nutritious meals and take your medication as directed so you feel your best. Get enough sleep at night and take naps when you need them to ensure that you have the energy to deal with stressful situations when they present themselves.
Physical exercise is another well-known stress buster. Over time, many patients are able to reincorporate low-impact exercise into their daily lives to energize and relax. While Doug was unable to sustain his rigorous workout schedule after his diagnosis, he recognized that physical fitness was still an important part of his stress management routine. Rather than giving up exercise altogether, he started going to a local pulmonary rehab center. Doug found that exercise at the pulmonary rehab center was the best way for him to alleviate stress. He felt comfortable working out in an environment with professionals who understood his condition and could provide recommendations based on his limitations. Consult with your medical provider to determine the most appropriate exercise regimen for you.
Nurture Your Spirit
In moments of crisis, many find comfort in finding connection to something larger than themselves. For some, this is their spirituality or faith. According to researchers at the University of Maryland Medical Center, “Spiritual practices tend to improve coping skills and social support, foster feelings of optimism and hope, promote healthy behavior, reduce feelings of depression and anxiety, and encourage a sense of relaxation.” Anna, who’s living with PH, lupus and scleroderma, told us, “In the beginning I would not address the issues that were causing me stress and then they would start to just snowball. Now I meditate and study Buddhism to cope.”
Another way people can connect to something greater than themselves and relieve stress is to cultivate meaningful connections. Often as the patient, you are the one being helped or even coddled. Some patients find fulfillment in building relationships that allow them to counter this patient-caregiver dynamic by helping others in need. Volunteering, tutoring, or even caring for a pet can make you feel good and help you develop a new sense of independence. Over time, cultivating meaningful connections can help you approach stressful situations with new perspective.
It’s also important to nurture relationships with friends and family members. Sylvia told us, “Dealing with a chronic illness will reveal those people in your life who you can rely on and those you can’t. Don’t dwell too much on those who are having difficulty dealing with your diagnosis. Focus on those who are your advocates. Their support will help you through rough times and raise your spirit again.” The simple act of talking about your experiences and frustrations with family and friends can provide a tremendous amount of relief. You might also consider joining a PHA support group or contacting a PH Email Mentor to connect with others living with PH (see Additional Resources).
Sometimes talking to family and friends just isn’t enough. If stress is getting in the way of everyday functioning, talk to a therapist, clergy person, or your PH doctor
- Prioritize. Make a list of your goals for this week and put them in order, from most important to least important. Cross off 2-3 items at the bottom of the list.
- Put yourself first. Remember, you need more rest than you did before you were diagnosed. It’s ok to say no when friends and family ask you to do things you don’t have the energy for.
- Meditate. A clear mind helps to alleviate stress. Take a few moments out of your day to find a quiet place to reflect and clear your thoughts.
- Exercise your mind. Crossword puzzles and Sudoku games allow your brain to relax and refocus.
- Exercise your body. Talk to your PH doctor about incorporating physical exercise into your schedule to release the tension that builds up in your body due to stress.
- Volunteer. Some people find that taking a moment to help another person allows them to approach stressful situation with fresh perspective.
- Nurture your spirit. In moments of crisis, many find comfort in relying on spirituality, faith, or a connection to something larger than themselves to cope with stress.
- Write. Keep a journal so you have a safe place to blow off steam, reflect on your day, and develop strategies for avoiding or addressing stressful situations in your daily life.
- Find and maintain a support network. When you’re feeling stressed, reach out to friends and family. Talk to them about how they can help to ensure you’re getting the support you need.
- Ask for help. If you’re dealing with unmanageable, chronic stress, it may be time to seek assistance from a mental health professional.
Books and Web Links
Information and Support for PH Patients
Medical review by Landra Slaughter, RN, University Hospitals, Cleveland, Ohio. Mental health review by Virginia Maril, MPsy, Texas Woman's University.
To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: April 2012