Identifying and Seeking Treatment for Depression
“People stare at you and my self-esteem has been lowered. I cry all the time. But then there are moments when you feel so uplifted and hopeful. Your faith is so strong and nothing can stop you from keeping on, pushing through whatever comes your way.”
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Living with pulmonary hypertension can introduce a host of daily challenges that may put you at increased risk of depression, from the stress of shifting family relationships to the uncertainty and loneliness of living with a rare illness. Whether you’ve been living with PH for months or years, feeling sad, anxious or scared is completely normal. It’s important to remember that depression, though very serious, is a treatable diagnosis that many people have experienced and successfully managed.
Recent studies show that the majority of people affected by PH will suffer from periods of depression. Because of its high incidence in the PH community, it’s important for you and your family to become familiar with its warning signs. Being prepared can make it easier to identify depression early so you can take steps to find treatment and move forward with your life.
While people are often hesitant to talk about depression, it can happen to anyone. In fact, some professionals believe that all of us will suffer from depression at some point in our lives. Despite its being very common, some people have misconceptions about depression that stigmatize people affected by it. Depression, like PH, is a nearly invisible disease, with internal symptoms that are difficult for onlookers to observe. Because it’s difficult to see, some people don’t believe it’s real. They have the false perception that if we are depressed, it means we are weak. They can’t understand why a person who’s depressed can’t just “get over it” or “shake it off.”
In reality, depression is a real illness — just like PH — and it can be a dangerous one. Depression is associated with higher rates of mortality, pain and physical illness. Pains and aches, digestive problems, fatigue, trouble sleeping, and changes in weight and appetite are all problematic side effects of depression that may interfere with a PH patient’s already compromised health.
While depression is common, it can be difficult to detect. There’s no blood test to identify depression, and we can’t see it under a microscope. So how do we know if we’re experiencing a temporary bout of the blues or something more serious? This is an important distinction to draw, as treatment for depression typically requires professional intervention. If you suspect that you may be depressed, a psychologist or physician will look for a collection of symptoms that are present over a significant period of time. You and your loved ones can also keep an eye out for these symptoms to determine whether you should seek treatment.
As you monitor yourself or someone you love for depression, it’s important to look for changes in behavior that last for more than a few weeks. For example, if you know that you’ve always cried during sad movies and continue to do so, that might be less significant than if this behavior developed after you were diagnosed. If the crying lasts for only a few days, this might be less significant than if it continues on a near-daily basis for a period of several weeks or more.
Here are some key symptoms of depression:
- Feeling sad, empty or numb. Depression may feel like a dark cloud that can make everything seem hopeless. Pay attention to how long these moods last and how often they occur. People suffering from depression typically experience feelings of sadness or hopelessness on a near daily basis.
- Diminished interest in activities. Depression can make you lose interest in activities that you once enjoyed. While it’s normal to be less interested in activities that have become more difficult because of PH-related physical limitations, take note if you find yourself less interested in activities you are still capable of doing, like socializing or sedentary hobbies.
- Significant change in weight or appetite. When depressed, some people find comfort in food, while others lose interest in eating altogether. Be aware of your tendencies and pay attention to weight losses, gains, and fluctuations in appetite.
- Sleep disturbance. Most people suffering from depression report unusual sleep patterns. Some people sleep much more than they normally would, while others sleep much less. Others experience a disturbed sleep cycle, staying awake all night and sleeping all day.
- Fatigue or loss of energy. Depression can make the activities of daily life almost impossible because it consumes an enormous amount of energy. Be aware of changes in the number or intensity of tasks you’re able to handle. Fatigue may present itself as an inability to keep up with everyday grooming, work, shopping and household chores. Keep in mind that when you have PH, increased fatigue, weight changes and sleep trouble related to depression may be mistaken for worsening symptoms of PH. It’s important to consider your energy levels within the context of your personality and your illness.
- Feelings of worthlessness or excessive guilt. These feelings are often inappropriate to the situation. Someone who is depressed might feel guilty for things they have no control over, including getting ill in the first place.
- Inability to concentrate. Depression, like PH, can make it hard to think clearly or pay attention to tasks and conversations. Even simple decisions can feel overwhelming. Notice if you have trouble completing tasks such as deciding which medication to take or if you are frustrated by simple decisions, like what to wear in the morning.
- A feeling of being completely alone. People suffering from depression frequently isolate themselves and pull away from loved ones. Take note if you find yourself avoiding conversations or wanting to be alone more than usual.
- An inability to relax. More than half of the people diagnosed with depression also have anxiety. Someone who is depressed may find it difficult to kick back and stop worrying, even for short periods of time.
- Recurrent thoughts of death. This symptom can look very different from person to person. Thoughts about death may be very explicit or they may be more covert. People might engage in risky behaviors, like not taking medications as prescribed, or make passing statements that indicate they wouldn’t care if they weren’t alive. If you or someone you love is thinking about suicide, visit your local emergency room or call the National Suicide Prevention Hotline at 1-800-273-TALK.
Anyone can suffer from depression. While the reasons for depression remain a bit of a mystery, most experts believe it is a combination of nature (your DNA) and nurture (your environment and experiences). Nature is thought to play a large part in an individual’s likelihood of becoming depressed. In other words, it’s likely that vulnerability to depression is passed down genetically. The most widely accepted theories point to an imbalance of certain chemicals in your brain, including the neurotransmitters serotonin and norepinephrine. Most medical treatment of depression attempts to regulate these chemical levels.
Your environment and life experiences also contribute to your likelihood of becoming depressed. Undergoing major life changes like divorce, job loss, grief, or a major medical diagnosis can increase your chances of becoming depressed. High levels of stress can contribute to and complicate depression. People who have histories of abuse or trauma are more likely to be depressed, especially if that trauma has gone untreated. Substance abuse can initiate or complicate depression, as can prescription medication. When being evaluated for depression, make sure you share your current medication list with your mental health professional and physician to help them determine whether your medication could be a contributing factor.
As someone living with PH, you are much more likely to suffer from depression than someone without a chronic illness. Whether you’re newly diagnosed or you’ve been living with PH for years, the challenges of daily life and health changes can lead to guilt, grief, sadness, disappointment, uncertainty, lowered self-esteem, and emotional fatigue.
Many PH patients experience intense feelings of guilt, one of the cardinal symptoms of depression. Some patients feel guilty because they can’t do as much as they did before they were diagnosed. Others feel guilty because they have to rely on friends and family to support them physically, emotionally or financially. One patient shared, “After being a caregiver most of my life, I now have to depend on others more. Not an easy thing for me to do.” Some even feel guilty because they are doing better than other patients in their support group. Unaddressed and unresolved, prolonged and intense feelings of guilt can lead to depression.
Another common experience among PH patients is loss. The sadness and disappointment tied to the loss of goals, plans and identities can be shattering. No one builds becoming ill into their plan. As one patient shared, “Having PAH is soooo hard. … The life you once had is now taken away from you and you experience a lot of loss: Loss of the old life, loss of friends, loss of job, loss of car, loss of home, loss of dignity.” All of this loss can compound and manifest as depression.
Fear and uncertainty are also common psychological features of PH that can contribute to depression. Many newly diagnosed patients are informed of the worst possible outcomes by under-informed doctors or, worse yet, Internet searches. Diagnosis is a scary and uncertain time, and unfortunately, the uncertainty never subsides entirely as health changes can also affect long-term survivors with little warning. As one support group leader told us, “People with severe PH are faced with some daunting tasks. You feel just absolutely totally out of control. And when you feel out of control when you’re trying, it makes you wonder why you should go on trying at all.”
While all of these feelings are normal, when guilt, hopelessness and sadness begin to take over your daily life so you’re no longer able to function, you may be depressed. Read on to learn more about taking the first steps towards finding treatment and managing depression in your everyday life.
Depression, though sometimes difficult to identify and understand, is an illness like any other, and symptoms will not go away on their own without attention and intervention. For stomach pain we can’t ignore, we go to the doctor. When depression begins 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. As Teresa, a PH patient who sought treatment for her depression, put it, “There are enough struggles when you have PH without struggling with your emotions. You don’t have to live with depression.”
Mental health professionals (psychologists, social workers and psychiatrists) use psychotherapy, lifestyle changes and sometimes medication to help people identify and overcome difficult issues and negative thinking patterns. The goal of treatment is to help you reclaim a sense of control and rediscover pleasure and fulfillment in daily activities. Psychotherapy, also known as talk therapy, may sound intimidating if you’ve never been to a therapist. Movies lead us to believe that going to therapy means lying on a couch and confessing our inner demons to a gentleman with a beard. In reality, talk therapy is the opportunity to spend a confidential hour with a professional trained to listen to what you have to say and help you find resolution or solutions to life challenges.
Just like physicians, different therapists have different qualifications and specialties. It may be important to you to find someone who works with people with chronic illness, though this specialization isn’t always necessary. The most important thing is to find someone you connect with and trust. Ask for recommendations from friends and family, your medical team or PH support group members, or visit the American Psychological Association’s Psychologist Locator to find a therapist in your area. Speak with a number of professionals on the phone and ask questions about their approach and style. Don’t be afraid to meet with several people before settling on someone you feel comfortable with. Finding the right therapist for you is a process, and it’s worth the time and effort.
Your mental health professional may also recommend medication to treat your depression. There are a number of medications that have proven very successful for individuals suffering from depression, particularly when coupled with talk therapy. If you are considering medication, remember to put your psychiatrist in touch with your PH doctor. One patient shared that encouraging communication between her doctors paved the way for successful treatment: “I told my psychiatrist about pulmonary hypertension right away. She was in touch with my PH doctor, and went over the medications. I try to always be very upfront with my psychiatrist, my PH doctor and my family doctor about what medications I’m taking, and I’ve never had problems with drug interactions.”
While professional help is a crucial component of depression treatment, you can also make lifestyle changes on your own to manage symptoms between therapy appointments. One of the most useful methods for managing difficult thoughts and feelings is a strategy called mindfulness. Mindfulness asks you to pay attention to the present moment purposefully and nonjudgmentally. It requires a dramatic shift in the way many of us think. There is a pervasive idea in the West that happiness is the natural state of emotion. This implies that pain, suffering and other difficult feelings must be avoided or tamed. Mindfulness derives from a more Eastern way of thinking that proposes that suffering is an integral part of the human condition, one that cannot be avoided or controlled. It is not our place, in this way of thinking, to avoid or master the suffering, but to accept it and move through it. Mindfulness requires nonjudgmental acceptance of your true feelings and the strength to stay with your feelings rather than trying to push them aside.
In the beginning, mindfulness practice may feel risky. You may worry that asking yourself to acknowledge and fully experience strong and uncomfortable emotions will send you spiraling out of control. You may fear that if you allow yourself to feel truly vulnerable in this moment, you’ll feel vulnerable forever. The important thing to remember about emotions is that no matter how intense they feel in the present moment, they come and go. Most people can’t sustain high levels of emotional intensity for very long. In fact, accepting your true feelings in the moment can actually help you move forward more quickly and completely than you would if you chose to resist or fight against your suffering.
Picture yourself standing in the surf with your feet planted firmly in the sand. The waves are crashing around you and you are being pushed and pulled in many different directions. You are pushed off your feet and struggle to get back up. What would happen if you leaned into the wave? What would happen if you let yourself float over the wave and, after it passed, placed your feet back on the ocean floor? Riding the wave would leave you with more energy than resisting the ocean’s force. When you feel overwhelmed, remember this lesson. Try leaning into the wave. This way of thinking takes practice, but over time, it’s possible to retrain your brain to accept the present moment, making you more attentive, clear-minded and calm.
Some patients choose to couple mindfulness with meditation or relaxation techniques and report positive effects on their mental and physical well-being. These practices can be spiritual or non-spiritual in nature, and may include prayer, modified yoga, or whatever feels right for you.
Another method for managing the symptoms of depression is by building resilience. Resilience refers to an individual’s ability to bounce back from adversity, stress or trauma. It’s not something that you have or don’t have. Resilience encompasses a series of traits that can be learned and cultivated to help alleviate the effects of depression. Here are some things you can do to build resilience and improve your overall emotional health:
- Build a caring support network. Research shows that one of the most important factors in building resilience is maintaining caring and supportive relationships. Reach out to friends and family to get support. Many patients also benefit from connecting with people in the PH community who understand what they’re going through. Consider reaching out to a local or online support group through PHA’s website (see Additional Resources).
- Be kind to yourself. Resilient people try to be as kind to themselves as they are to others. Remind yourself what you like about yourself. Forgive yourself. Set realistic goals. Perhaps pre-diagnosis, you were able to pop up out of bed, run a couple miles, make breakfast, pack a lunch, and head off to work. This may not be a realistic goal for you now that you have PH. Maybe a realistic goal now is preparing lunch the night before, slowly waking, and doing your physician-recommended exercises. When you set goals you can achieve, you’ll feel better about your abilities.
- Expect and accept change. Change is one of the few things we are guaranteed in life, yet we often work very hard to resist it. Resilient people are capable of adapting to new conditions and uncertainty. One way to become more accepting of change is by anticipating it and planning for it in advance. While you won’t be able to anticipate every possible change to come your way, you can become more accepting of change by imagining what you’d do in a variety of scenarios, from dealing with financial trouble to coping with relationship stress.
- Control what you can. Research also shows that resilient people are focused. They take stock of what they can control and then take steps to actively improve those areas of their lives. Eat regularly and nutritiously. Exercise. Go to doctors’ appointments and follow your medical team’s directions. If something prescribed isn’t working for you, call your doctor or nurse. Get massages if you like. Get enough sleep. Wear clothing that makes you feel comfortable and good. Even simple things can make a difference in your outlook and how you feel.
- Integrate more of what you love into your life. Resilient people share the belief that while life is complex, it’s also filled with opportunities. Brainstorm things that bring you peace, joy and happiness and incorporate those activities into your daily life. Take steps to reduce your exposure to people and things that make you feel badly. Maybe you can’t completely cut ties with your nosy neighbor or a taxing relative, but you can choose when you want to answer the phone.
- Reflect on your coping skills. Another practice that builds resilience is to look at how you have coped with challenges in the past. What worked? What wasn’t helpful? What strategies that have proven effective in the past could you employ in the current situation to help you through? Dedicating time, thought and energy to your emotional health can make an enormous difference in your ability to ride and survive the ups and downs of life with PH.
Information on Depression
- Supporting a Loved One with Depression, a resource for PH caregivers
- National Alliance on Mental Illness
- Depression Screener
- Depression Center on WebMD
Suicide and Depression Hotlines
- National Suicide Prevention Lifeline: 1-800-273-TALK (1-800-273-8255)
- National Crisis Help Line: 1-800-SUICIDE (1-800-784-2433)
- Depression Hotline: 630-482-9696
- Para obtener asistencia en español llame al: 1-888-628-9454
Support and Information for PH Patients
- Find a therapist
- PHA’s Patient-to-Patient Support Line: 800-748-7274
- PH Email Mentors
- Local and virtual support groups
- How to be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, ToniBernhard (Wisdom Publications, 2010)
By Virginia Maril, MPsy, Texas Woman’s University. 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