Identifying and Seeking Treatment for Depression
What to Expect
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.
Depression or the Blues?
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:
Who Becomes Depressed and Why?
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 nor-epinephrine. 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.
Depression and Pulmonary Hypertension
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.
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.
Depression or the Blues?
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, speak to Life Line HERE or Beyond Blue HERE
Who Becomes Depressed and Why?
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 nor-epinephrine. 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.
Depression and Pulmonary Hypertension
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.
Moving Forward Treating Depression
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.”
Managing Depression by Practicing Mindfulness
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 non-judgmentally. 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.
Managing Depression by Building Resilience
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:
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.”
Managing Depression by Practicing Mindfulness
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 non-judgmentally. 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.
Managing Depression by Building Resilience
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.
Recognizing Depression in Yourself or Your Loved One
“My wife told me she feels like her life is over. I don’t know how to help anymore.”
“I have been dealing with overwhelming depression and anxiety. My husband is my very best friend and the person I turn to when I am most scared or upset. So when the person you usually look to is the one you can’t, it is the scariest and most helpless feeling. I know I need to probably get help for this as I imagine the fear and anxiety are not going to just ‘go away’ because my husband’s PH is not going to just go away either.”
What to Expect
Pulmonary hypertension patients and caregivers face a host of daily challenges that put them at increased risk of depression, from the financial strain of medical bills to the isolation and loneliness of living with a rare illness. Recent studies indicate that while the majority of people affected by PH suffer from periods of depression, with treatment, most of these patients and caregivers go on to overcome their symptoms and live full and meaningful lives.
In families living with PH, it’s not uncommon for more than one family member to be depressed. The emotional effects of chronic illness can make people act differently than they did before diagnosis, and these changes inevitably affect other members of the household. If you have noticed changes in your loved one or yourself, you are not alone. One husband to a PH patient told us, “I feel overwhelmed by my wife’s condition and her actions toward me and others.” Another said, “My sister’s diagnosis came with a lot of questions and definitely shock, and it was kind of crazy watching my family go through all the emotions.”
As the caregiver of a PH patient, it’s important to become familiar with the warning signs of depression and learn about the resources available if anyone in your family needs help. Depression is a serious but treatable illness, and research suggests that the earlier depression is treated, the greater the likelihood of a positive outcome.
Identifying Depression
Depression is an illness that affects millions every year, but there’s no blood test for depression and no virus that scientists can study under a microscope. Depression can affect how a person acts, feels and thinks, and yet many people don’t realize they are depressed until they’ve been living with the symptoms for a very long time. It’s also unusual for someone suffering from depression to go to loved ones to ask for help. That’s why it’s so important for everyone in a family affected by PH to understand depression and stay alert to the symptoms in the patient, the primary caregiver and other family members.
As you watch for symptoms of depression you are looking for changes in behavior that present themselves over an extended period of time. If the person you are caring for has always cried during sad movies and continues to do so, this might be less significant than if this behavior developed after being diagnosed. If the crying lasts only for a few days, this might be less significant than if this behavior continues on a near-daily basis for a period of several weeks or more.
A few of the key symptoms of depression are:
“My wife told me she feels like her life is over. I don’t know how to help anymore.”
“I have been dealing with overwhelming depression and anxiety. My husband is my very best friend and the person I turn to when I am most scared or upset. So when the person you usually look to is the one you can’t, it is the scariest and most helpless feeling. I know I need to probably get help for this as I imagine the fear and anxiety are not going to just ‘go away’ because my husband’s PH is not going to just go away either.”
What to Expect
Pulmonary hypertension patients and caregivers face a host of daily challenges that put them at increased risk of depression, from the financial strain of medical bills to the isolation and loneliness of living with a rare illness. Recent studies indicate that while the majority of people affected by PH suffer from periods of depression, with treatment, most of these patients and caregivers go on to overcome their symptoms and live full and meaningful lives.
In families living with PH, it’s not uncommon for more than one family member to be depressed. The emotional effects of chronic illness can make people act differently than they did before diagnosis, and these changes inevitably affect other members of the household. If you have noticed changes in your loved one or yourself, you are not alone. One husband to a PH patient told us, “I feel overwhelmed by my wife’s condition and her actions toward me and others.” Another said, “My sister’s diagnosis came with a lot of questions and definitely shock, and it was kind of crazy watching my family go through all the emotions.”
As the caregiver of a PH patient, it’s important to become familiar with the warning signs of depression and learn about the resources available if anyone in your family needs help. Depression is a serious but treatable illness, and research suggests that the earlier depression is treated, the greater the likelihood of a positive outcome.
Identifying Depression
Depression is an illness that affects millions every year, but there’s no blood test for depression and no virus that scientists can study under a microscope. Depression can affect how a person acts, feels and thinks, and yet many people don’t realize they are depressed until they’ve been living with the symptoms for a very long time. It’s also unusual for someone suffering from depression to go to loved ones to ask for help. That’s why it’s so important for everyone in a family affected by PH to understand depression and stay alert to the symptoms in the patient, the primary caregiver and other family members.
As you watch for symptoms of depression you are looking for changes in behavior that present themselves over an extended period of time. If the person you are caring for has always cried during sad movies and continues to do so, this might be less significant than if this behavior developed after being diagnosed. If the crying lasts only for a few days, this might be less significant than if this behavior continues on a near-daily basis for a period of several weeks or more.
A few of the key symptoms of depression are:
- Feelings of sadness, numbness, or emptiness nearly every day. Depression may feel like a dark cloud that can make everything seem hopeless. Be aware of any irritability or lack of humor. Not everyone expresses these feelings in words. Pay attention to non-verbal cues, such as crying or shutting off from family more often than is normal compared to past behavior.
- Markedly diminished pleasure in almost all activities. Be particularly aware of a loss of interest in things your loved one used to enjoy such as exercising, cooking or hobbies. Sexual interest may also decrease.
- Significant weight loss or weight gain, or decrease or increase in appetite. In children, consider failure to make expected weight gains.
- Insomnia or excessive daytime sleeping nearly every day. Recent research shows that about 80% of people with depression also suffer from insomnia and that 15% of people with depression sleep too much.
- Fatigue nearly every day. Depression can make the activities of daily life almost impossible because it consumes an enormous amount of energy. Be aware of changes in the amount of energy or number or intensity of tasks your loved one seems able to handle. This may present itself as an inability to keep up with everyday grooming, work, shopping and household chores. Keep in mind that in patients, increased fatigue, weight changes and sleep trouble related to depression may be mistaken for worsening symptoms of PH.
- Feelings of worthlessness or excessive guilt nearly every day. 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.
- Diminished ability to think, concentrate or make decisions. Depression can make it hard to think clearly or pay attention to tasks and conversations. Even simple choices can feel overwhelming. Notice if there is difficulty completing tasks such as deciding which medication to take or if there is frustration built into even simple decisions, like which sweater to wear or magazine to read.
- A feeling of being completely alone. People suffering from depression frequently isolate themselves and pull away from loved ones. Take note if your loved one begins avoiding conversations and wants to be alone more than usual.
- An inability to relax.More than half of the people diagnosed with depression also suffer from anxiety. Someone who is depressed may find it difficult to kick back and stop worrying, even for short periods of time.
- Thoughts of death and suicide. Some people wish that they were dead, feeling that the world would be better off without them. Others make very explicit plans to hurt themselves. One of the best ways to prevent suicide in someone who is depressed is to recognize these warning signs of suicide and always take them seriously.If you or a loved one is thinking about self-harm or suicide, please contact Life Line Australia HERE
Depression in Your Loved One
As a PH caregiver, you may be the first to recognize that your loved one is in need of help. In some cases, however, the opposite is true. Caregivers and other family members sometimes find that they are too close to the patient to recognize the symptoms of depression and take action. It’s common to confuse symptoms of depression with irritability, laziness, fatigue related to the patient’s PH, or sadness that’s “to be expected” in someone with a serious disease. If your loved one is newly diagnosed, you may assume that this is the way life with chronic illness has to be. This is simply not the case. Many PH patients have overcome periods of depression brought on by diagnosis, changes in health status, and other environmental and circumstantial factors to live meaningful and fulfilling lives.
Many loving and concerned caregivers are distraught to find that it does not always come naturally to be supportive when a loved one is exhibiting symptoms of depression. Some worry that if they interact with a depressed person too much, they will slip into a depressed state too. Others simply find themselves frustrated and unable to relate. Human beings want to respond to the suffering of others by listening and providing physical and emotional support. This support may come naturally when the suffering is due to clear and observable symptoms, such as those experienced by a person suffering from a physically debilitating illness. When we can actually see the suffering, it is easier to relate and respond to that suffering.
With clinical depression, however, much like with pulmonary hypertension, an individual’s suffering happens mostly on the inside, with few visible outward signs besides exhaustion. It’s much more challenging to relate to the suffering a person experiences when depressed. Because you can’t always see depression, it is frequently confused by friends and family members with laziness or self-pity. Some caregivers will find themselves telling their loved ones to “snap out of it.” But expecting someone with depression to “snap out of it” is like asking someone with PH to “just breathe easier” or a person with diabetes to “just stop having high blood sugar.” Recovery is not a matter of will power. These are illnesses that take place at a cellular level and typically require the intervention of a health professional in order to improve.
If you notice any of the symptoms of depression in your loved one, it’s important to take action. As any other illness, depression can compromise an individual’s physical health. It can cause physical pains and aches, digestive problems, fatigue, sleeping problems, changes in weight and appetite, dizziness and lightheadedness, all problematic side effects that may interfere with a PH patient’s already compromised quality of life. Furthermore, people suffering from depression are sometimes less likely to follow their medication regimens, which can seriously compromise a PH patient’s treatment plan. A PH patient suffering from depression must be treated for depression as well as PH and any other illnesses they may be living with. If the symptoms have been apparent for some time, talk to your loved one and your loved one’s PH-treating physician at the earliest opportunity.
As a PH caregiver, you may be the first to recognize that your loved one is in need of help. In some cases, however, the opposite is true. Caregivers and other family members sometimes find that they are too close to the patient to recognize the symptoms of depression and take action. It’s common to confuse symptoms of depression with irritability, laziness, fatigue related to the patient’s PH, or sadness that’s “to be expected” in someone with a serious disease. If your loved one is newly diagnosed, you may assume that this is the way life with chronic illness has to be. This is simply not the case. Many PH patients have overcome periods of depression brought on by diagnosis, changes in health status, and other environmental and circumstantial factors to live meaningful and fulfilling lives.
Many loving and concerned caregivers are distraught to find that it does not always come naturally to be supportive when a loved one is exhibiting symptoms of depression. Some worry that if they interact with a depressed person too much, they will slip into a depressed state too. Others simply find themselves frustrated and unable to relate. Human beings want to respond to the suffering of others by listening and providing physical and emotional support. This support may come naturally when the suffering is due to clear and observable symptoms, such as those experienced by a person suffering from a physically debilitating illness. When we can actually see the suffering, it is easier to relate and respond to that suffering.
With clinical depression, however, much like with pulmonary hypertension, an individual’s suffering happens mostly on the inside, with few visible outward signs besides exhaustion. It’s much more challenging to relate to the suffering a person experiences when depressed. Because you can’t always see depression, it is frequently confused by friends and family members with laziness or self-pity. Some caregivers will find themselves telling their loved ones to “snap out of it.” But expecting someone with depression to “snap out of it” is like asking someone with PH to “just breathe easier” or a person with diabetes to “just stop having high blood sugar.” Recovery is not a matter of will power. These are illnesses that take place at a cellular level and typically require the intervention of a health professional in order to improve.
If you notice any of the symptoms of depression in your loved one, it’s important to take action. As any other illness, depression can compromise an individual’s physical health. It can cause physical pains and aches, digestive problems, fatigue, sleeping problems, changes in weight and appetite, dizziness and lightheadedness, all problematic side effects that may interfere with a PH patient’s already compromised quality of life. Furthermore, people suffering from depression are sometimes less likely to follow their medication regimens, which can seriously compromise a PH patient’s treatment plan. A PH patient suffering from depression must be treated for depression as well as PH and any other illnesses they may be living with. If the symptoms have been apparent for some time, talk to your loved one and your loved one’s PH-treating physician at the earliest opportunity.
Depression in Caregivers
PH patients aren’t the only ones at increased risk of depression. While caregivers don’t have to personally manage the physical symptoms of PH, a 2011 study revealed that their lives are just as affected in all other areas, including the practical, social and emotional arenas. In a PHA survey of PH caregivers, 42% reported that they sometimes felt sad or depressed. When caregivers are depressed, they often neglect their own needs due to the inherently unequal nature of the patient/caregiver relationship. In a recent survey, one caregiver wrote: “I am in therapy and I try not to let myself get too fearful, but I panic through every PH doctor appointment. I try to be strong for her, but I am losing it.”
To be an effective caregiver and to notice signs of depression in your loved one, you must take care of yourself with the same intention and commitment with which you care for the others in your life. In fact, since you are taking care of (at least) two people, the effort to keep yourself physically and mentally healthy may be twice as challenging. Remember the flight attendant’s instructions as the airplane takes off: “In case of emergency, first place the oxygen over your face and then your child’s…” Caregivers who don’t pay attention to their own needs can experience caregiver burnout and be too exhausted, stressed or unfocused to help their loved ones. Try to develop a routine that includes exercise, stress management, a healthy diet, sufficient rest and time with family and friends who can support you.
If you suspect that you may be suffering from depression, anxiety or chronic stress, give your symptoms the attention they deserve. Read on for tips to help you and/or your loved one overcome depression.
Moving Forward - Treating Depression
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 an individual’s 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 (psychologists, social workers and psychiatrists) use therapy, lifestyle changes and sometimes medication to help people identify and overcome difficult issues and negative thinking patterns. The goal of treatment is to help an individual reclaim a sense of control and rediscover pleasure and fulfillment in daily activities. Many people start by seeking out a psychologist or social worker, as these are the front-line therapists who can provide short- or long-term treatment. As therapists get to know their clients, they sometimes refer them on to psychiatrists who have the ability to prescribe and track medications.
The search for the right therapist can take time. Ask your loved one’s PH doctor, primary care physician, 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 to PH patients and caregivers. Seek out a professional who you (or your loved one) feel comfortable with and who’s willing to get to know you before deciding on a course of treatment. This may mean interviewing multiple therapists in person or by phone. This process can be a bit like dating—not everyone is compatible, and the right match is worth the effort.
PH patients aren’t the only ones at increased risk of depression. While caregivers don’t have to personally manage the physical symptoms of PH, a 2011 study revealed that their lives are just as affected in all other areas, including the practical, social and emotional arenas. In a PHA survey of PH caregivers, 42% reported that they sometimes felt sad or depressed. When caregivers are depressed, they often neglect their own needs due to the inherently unequal nature of the patient/caregiver relationship. In a recent survey, one caregiver wrote: “I am in therapy and I try not to let myself get too fearful, but I panic through every PH doctor appointment. I try to be strong for her, but I am losing it.”
To be an effective caregiver and to notice signs of depression in your loved one, you must take care of yourself with the same intention and commitment with which you care for the others in your life. In fact, since you are taking care of (at least) two people, the effort to keep yourself physically and mentally healthy may be twice as challenging. Remember the flight attendant’s instructions as the airplane takes off: “In case of emergency, first place the oxygen over your face and then your child’s…” Caregivers who don’t pay attention to their own needs can experience caregiver burnout and be too exhausted, stressed or unfocused to help their loved ones. Try to develop a routine that includes exercise, stress management, a healthy diet, sufficient rest and time with family and friends who can support you.
If you suspect that you may be suffering from depression, anxiety or chronic stress, give your symptoms the attention they deserve. Read on for tips to help you and/or your loved one overcome depression.
Moving Forward - Treating Depression
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 an individual’s 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 (psychologists, social workers and psychiatrists) use therapy, lifestyle changes and sometimes medication to help people identify and overcome difficult issues and negative thinking patterns. The goal of treatment is to help an individual reclaim a sense of control and rediscover pleasure and fulfillment in daily activities. Many people start by seeking out a psychologist or social worker, as these are the front-line therapists who can provide short- or long-term treatment. As therapists get to know their clients, they sometimes refer them on to psychiatrists who have the ability to prescribe and track medications.
The search for the right therapist can take time. Ask your loved one’s PH doctor, primary care physician, 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 to PH patients and caregivers. Seek out a professional who you (or your loved one) feel comfortable with and who’s willing to get to know you before deciding on a course of treatment. This may mean interviewing multiple therapists in person or by phone. This process can be a bit like dating—not everyone is compatible, and the right match is worth the effort.
Lifestyle Changes
While professional help is a crucial component of depression treatment, you can also make lifestyle changes on your own to deal with symptoms between therapy appointments. Make every effort to treat yourself with the same compassion that you would treat a loved one. Remember that depression is an understandable response to a very difficult situation. Here are some suggestions for incorporating self-compassion and self-care into your life:
While professional help is a crucial component of depression treatment, you can also make lifestyle changes on your own to deal with symptoms between therapy appointments. Make every effort to treat yourself with the same compassion that you would treat a loved one. Remember that depression is an understandable response to a very difficult situation. Here are some suggestions for incorporating self-compassion and self-care into your life:
- Get in a routine. It’s common for a caregiver to feel overwhelmed after their loved one’s diagnosis because their old routines no longer accommodate their PH-related responsibilities and reorganized priorities. Rather than living in reaction to the tasks and stresses that present themselves day in and day out, try to establish a new routine that incorporates your work, chores, meals, care giving responsibilities and fun time. By structuring your day with pre-planned activities, it’s possible to slowly regain a sense of control over many aspects of your life.
- Take up good habits. Maintain consistent sleep patterns, eat nutritious meals and exercise on a regular basis. Try stress-relief techniques like breathing exercises, muscle relaxation and yoga. If you’re having trouble finding the time, talk to your therapist about ways to incorporate small self-care activities into your daily schedule.
- Break the cycle of negative thinking. You may find yourself experiencing feelings of self-reproach and shame as you come to terms with your depression. One PH caregiver told us that a year after her adult son was diagnosed, she found herself lying awake every night ruminating about what a bad mother she was. Over time, with the help of a therapist and a supportive family, she realized that these thoughts weren’t based in reality. Try to take notice when your mind starts to fixate on negative and unproductive thoughts. You may notice that these thoughts often come in a chain, with one leading to another and another after that. Some people find it helpful to recite a self-accepting statement, something like, “I’m trying my best, and that’s the best I can do,” to break this cycle.
- Build a network of support. The support of family members and friends can make a big difference in the speed and success of your recovery. It’s also a good idea to connect with people who can relate to some aspects of what you’re dealing with.
- Reach out for help. One PH caregiver told us, “I feel like I have to be there, every moment, everywhere, 24/7.” If you’re holding on to similar superhuman standards, do yourself a big favor and let go of them now. Not even the most loving and supportive caregivers are with their loved ones all the time. You owe it to yourself and your entire family to schedule in “me time” to tend to your own needs. Assemble a core group of trusted friends and family members to be a part of your “PH team.” Assign your helpers clear and specific tasks like grocery shopping, transportation to medical appointments and cooking the occasional meal.
- Be patient. It takes time to see the benefits of therapy, medication and lifestyle changes. Don’t give up after a few weeks just because you haven’t seen dramatic changes. Keep putting effort into your recovery and all your hard work will eventually start to pay off.
Supporting a Loved One with Depression
For most people, knowing how to respond to someone with a serious illness can be a very challenging. We don’t want to say the wrong thing. We don’t want to appear insensitive. We don’t yet know what is helpful and what isn’t. On top of all that, seeing a person we love dealing with pain and suffering often reflects back to us our own mortality and this can be very frightening. For many, this proves too difficult to handle and they simply become unavailable.
Yet part of being an effective caregiver is being open to many of the same emotional challenges your loved one will confront. This means a willingness to be present with the fears, anxieties and range of questions that will arise. No matter how loving and diligent you are, you will never be the “perfect” caregiver. You will make mistakes, and that’s ok. With care-giving there is a very steep learning curve and like any learning process it will take practice, patience and commitment to get through.
Here are some suggestions for communicating with a loved one who is depressed:
Even with these tips in your back pocket, many caregivers find it challenging to provide the support they want to provide. One caregiver told us, “Some days it feels like everything I say is wrong, everything sends her further down her dark spiral. I don’t know what to do for her when she gets like that.” Keep in mind that there’s no magical pep talk or solution that will make a depressed person perk up. The biggest gift you can offer your loved one is a stable environment and your caring presence.
Bob and Sharon. Here’s an example of a conversation between Sharon, a woman living with PH, and her husband, Bob. Bob can’t change Sharon’s feelings, but in this conversation he is able to provide patient and persistent support without losing his temper or putting pressure on her to “snap out of it.”
Sharon: (tearfully) I don’t want to go out tonight.
Bob: (neutrally, trying to understand what’s motivating Sharon’s feelings) Ok…
Sharon: I just don’t think I am very good company. I feel exhausted all the time, and I just want to go to bed.
At this point in the conversation, Bob just listens for a bit before responding to make sure there is nothing else Sharon needs to say. Being comfortable with silence and resisting the urge to offer advice can be healing for both patient and caregiver.
Bob: (after a while, emphatically, without judgment…) Sounds like you’re having a hard time right now.
Sharon: I just don’t know how I am going to get through this.
Bob: Well, there’s a lot going on and you have a very full plate right now. It’s no wonder you’re feeling some self-doubt.
Sharon: You have no idea.
Bob: That’s probably true. (After a while…) I do have to tell you that I have a lot of faith in you and in us to get through this. You have to try and remember that you are not alone in this.
Sharon: That’s what it feels like. You’re not ready to pass out after a walk to the mailbox, Bob. You haven’t had to give up your job. I know you mean well, but you really just don’t know what it’s like.
Bob: You’re right. I can’t imagine what it must be like for you. Can I hug you?
Sharon: (tearfully) Yes.
Bob: (after a pause…) So, listen. We can do a few things. If you’d like to get into bed, I can rub your back a little and we can play it by ear as to whether we go out or not. Either way is fine with me. I don’t want you to feel pressured. I think you may be a little depressed and it’s just important that you take care of yourself right now. But I do want to tell you that things are going to get better. When we see Dr. Smith, maybe he can suggest some ways to deal with the exhaustion and difficult feelings. What do you think?
Sharon: I guess that sounds ok. Thank you, Bob.
Of course all conversations won’t go this smoothly, for Bob or for you. Depression is a very difficult illness to come to terms with. But the main ingredients of healthy conversations are almost always the same: a willingness to listen without judgment and an acceptance of the present moment for what it is. Sometimes conversations will go well, and sometimes they won’t. One caregiver recalls the moment that his persistence finally started to pay off. He shared, “[The emotional challenges] were very hard to address, but when I heard the words from her, ‘Thank you, you have been so good to me in this ordeal,’ the challenges started to melt away.” It may not happen overnight, but over time it’s possible for your presence and support to play a central part in your loved one’s healing process.
Shared with you from PHAssociation.org USA
For most people, knowing how to respond to someone with a serious illness can be a very challenging. We don’t want to say the wrong thing. We don’t want to appear insensitive. We don’t yet know what is helpful and what isn’t. On top of all that, seeing a person we love dealing with pain and suffering often reflects back to us our own mortality and this can be very frightening. For many, this proves too difficult to handle and they simply become unavailable.
Yet part of being an effective caregiver is being open to many of the same emotional challenges your loved one will confront. This means a willingness to be present with the fears, anxieties and range of questions that will arise. No matter how loving and diligent you are, you will never be the “perfect” caregiver. You will make mistakes, and that’s ok. With care-giving there is a very steep learning curve and like any learning process it will take practice, patience and commitment to get through.
Here are some suggestions for communicating with a loved one who is depressed:
- Listen without judgment. Most people underestimate the value of listening. Try to get a sense of what this experience is like for your loved one. Put aside the need to fix, advise, criticize or react. Most caregivers will wrestle with their desire to be in control. After all, it’s your attention to detail and willingness to help that makes you such a capable PH caregiver to begin with. But for someone who’s depressed to truly heal, “answers” often need to come from within, not from their family or friends. Rather than offering advice, make yourself emotionally available and allow your loved one the space to share.
- Accept the reality of this moment. Acknowledge that this situation is what it is. You don’t have to condone your loved one’s feelings or give up hope that they’ll change in order to accept them in this moment. Meet your loved one where she is, not where she was yesterday or where you think she should be, and take every moment as it comes.
- Be reassuring. Remember that someone suffering from depression might have a distorted perception of the world around them. By pointing out realistic options, honest observations that emphasize the positive aspects of situations, and the admirable qualities your loved one possesses, you can play a part in countering the hopeless and negative thoughts your loved one may be feeling.
- Practice the art of gentle encouragement. If you get an invitation for a party and your loved one declines, don’t force the issue. Feeling pressured to socialize can make someone who’s depressed withdraw further. But don’t give up on your loved one either. Give it time and ask again.
- Be true to yourself. Don’t ignore your own feelings or pretend that you’re not affected by the changes brought on by PH, depression or other household stresses. In the long run, trying to disguise your true feelings can take a toll on both you and your relationship. Acknowledge how you’re feeling, first to yourself and, if you’d like, to your loved one. When you’re talking about your feelings, try to speak from an “I” perspective. For example, rather than saying, “You’re not listening to me,” try, “I feel unheard.” This acknowledges to your loved one that you’re taking responsibility for your emotions and will make it easier for them to listen to what you’re saying without feeling humiliated or attacked.
Even with these tips in your back pocket, many caregivers find it challenging to provide the support they want to provide. One caregiver told us, “Some days it feels like everything I say is wrong, everything sends her further down her dark spiral. I don’t know what to do for her when she gets like that.” Keep in mind that there’s no magical pep talk or solution that will make a depressed person perk up. The biggest gift you can offer your loved one is a stable environment and your caring presence.
Bob and Sharon. Here’s an example of a conversation between Sharon, a woman living with PH, and her husband, Bob. Bob can’t change Sharon’s feelings, but in this conversation he is able to provide patient and persistent support without losing his temper or putting pressure on her to “snap out of it.”
Sharon: (tearfully) I don’t want to go out tonight.
Bob: (neutrally, trying to understand what’s motivating Sharon’s feelings) Ok…
Sharon: I just don’t think I am very good company. I feel exhausted all the time, and I just want to go to bed.
At this point in the conversation, Bob just listens for a bit before responding to make sure there is nothing else Sharon needs to say. Being comfortable with silence and resisting the urge to offer advice can be healing for both patient and caregiver.
Bob: (after a while, emphatically, without judgment…) Sounds like you’re having a hard time right now.
Sharon: I just don’t know how I am going to get through this.
Bob: Well, there’s a lot going on and you have a very full plate right now. It’s no wonder you’re feeling some self-doubt.
Sharon: You have no idea.
Bob: That’s probably true. (After a while…) I do have to tell you that I have a lot of faith in you and in us to get through this. You have to try and remember that you are not alone in this.
Sharon: That’s what it feels like. You’re not ready to pass out after a walk to the mailbox, Bob. You haven’t had to give up your job. I know you mean well, but you really just don’t know what it’s like.
Bob: You’re right. I can’t imagine what it must be like for you. Can I hug you?
Sharon: (tearfully) Yes.
Bob: (after a pause…) So, listen. We can do a few things. If you’d like to get into bed, I can rub your back a little and we can play it by ear as to whether we go out or not. Either way is fine with me. I don’t want you to feel pressured. I think you may be a little depressed and it’s just important that you take care of yourself right now. But I do want to tell you that things are going to get better. When we see Dr. Smith, maybe he can suggest some ways to deal with the exhaustion and difficult feelings. What do you think?
Sharon: I guess that sounds ok. Thank you, Bob.
Of course all conversations won’t go this smoothly, for Bob or for you. Depression is a very difficult illness to come to terms with. But the main ingredients of healthy conversations are almost always the same: a willingness to listen without judgment and an acceptance of the present moment for what it is. Sometimes conversations will go well, and sometimes they won’t. One caregiver recalls the moment that his persistence finally started to pay off. He shared, “[The emotional challenges] were very hard to address, but when I heard the words from her, ‘Thank you, you have been so good to me in this ordeal,’ the challenges started to melt away.” It may not happen overnight, but over time it’s possible for your presence and support to play a central part in your loved one’s healing process.
Shared with you from PHAssociation.org USA
