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.”


Debbie and Doreen, PH caregivers and friends

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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, visit your local emergency room or call the National Suicide Prevention Hotline at 1-800-273-TALK.

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 light-headedness, 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.

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:

  • 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, caregiving 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. You might consider joining PHA’s online email group for caregivers or a depression support group (see Additional Resources).
  • 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.

Debbie and Alex

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 caregiving 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, empathically, 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.

Additional Resources

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

Information on Depression

Support and Resources for Caregivers

PHA is grateful to Charles Leighton, LCSW, CGP, a psychotherapist and stress management educator based in Butler, N.J., for his contributions and review, and to all the members of the PH community who shared their experiences to make this resource possible. PH medical review by Keith Swetz, MD, Associate Program Director of the Palliative Medicine Program at Mayo Clinic in Rochester, Minn.

To review Conflict of Interest Disclosures for PHA's medical leadership, visit: Disclosures
Last reviewed: March 2012

 

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.