Grieving the Loss of a Fellow Patient


“Today we mourn a woman who inspired so many of us. Although these past few years she was unable to physically attend support group meetings, she was there. We always communicated either by email or phone (when she was able to talk) and she always had a little something to pass on to the group.”

“It is always hard to say goodbye to those who are our friends and family. I count my PH friends as both.”


Jump to a section:Advice from Michelle, a PH patient

What to Expect

The pulmonary hypertension community is a tight-knit group. As such, many patients have dear friends who are also living with PH. Patients may have met through PHA’s support groups or online communities, on Facebook, through their PH clinic, or at special events. Some people living with severe PH interact more frequently and in more meaningful ways with their “PHamily” online or by phone than they do with people in their local communities. For people with a rare disease, the connection forged with those who understand what they are dealing with can bring much-needed comfort and relief. For many patients with limited mobility, these friendships provide daily social sustenance, and truly keep them going.

When a member of the PH community loses their battle, they leave behind not just their own family and friends, but also a network of people with this illness who knew them and loved them. The surviving patients lose a close friend and are faced with the stark reality of their own illness. During these times, surviving patients can feel anxious, depressed, alone and guilty. They might isolate themselves to try and deal with the myriad feelings that emerge. It may feel too hard or overwhelming to attend a support group meeting or participate on PHA’s message boards.

Death is the only thing we are guaranteed in life. It is the cost of living. When we lose someone, it’s normal to feel alone, confused, and a range of other intense emotions. This experience becomes even more complicated when the person lost was suffering from the same disease with which you live. This resource was developed to help patients grieving the loss of another patient.

How Grief Happens

Grief is an intensely personal venture and one that can look very different from person to person. Perhaps you’ve known people who don’t seem fazed by loss, while others seem to have their worlds turned upside down. These extremes, and everything in between, are all completely valid ways of experiencing grief. Your grief is your own. It is yours to navigate and process in whatever way works for you. With that said, there are some common experiences with which you may already be familiar.

Perhaps the most famous model of grief was proposed by physician Elisabeth Kübler-Ross, who spent many years working with terminally ill patients and their families. She witnessed grief repeatedly and began to recognize similarities in various individuals’ experiences. The Kübler-Ross model includes the following stages. Keep in mind that not everyone experiences all of these stages or experiences them in the same order.

Denial and Isolation

For patients, denial can look like the general refusal to accept their illness. Perhaps they choose not to see a PH specialist or take their medication. Friends and family may say things like, “You’re going to be okay. You can beat this,” even when the prognosis is very serious. Isolating is a common strategy for people experiencing something very difficult. It can feel safer and more manageable to focus on your own needs. Maybe you don’t want others to know how much you’re hurting. You may be particularly hesitant to let another patient know that you are hurting because of experiences you have in common.

Denial can help us feel better temporarily. We don’t want to say goodbye to someone we care about or face our own mortality. Denial allows us some time to cope with the practical effects of a loss on our lives before having to acknowledge and work through the way loss makes us feel. Sometimes we stall out in denial and isolation, and that can be harmful. In the long run, reaching out to others is one of the healthiest things we can do. Being supported in times of intense emotion can reduce the negative psychological and physical impacts of grief.

Anger

When we lose someone we care about, it makes sense to feel angry. No one asks to get PH. It’s not something anyone signed up for, planned on, or looked forward to. It just happened. And it is unfair. If you want and need to be angry for a time, be angry. Be angry that you have lost your friend. Be angry that you lost the life you had envisioned for yourself. Be angry at the medication and the oxygen and the lack of opportunity to be spontaneous in your life. Be angry, and move through it. Holding on to anger has direct effects on mood and health.

Bargaining

In this stage of grief, individuals explore feelings of guilt by making deals with the past, the future, or a higher power. Maybe you feel guilty about getting sick in the first place, for feeling like you didn’t do enough when you were healthy, or because a friend is suffering or gone while you’re doing well. Sometimes these are deals with the intention of shaping the future, such as, “If you keep me healthy until my child’s graduation, I’ll do volunteer work every week.” When someone’s passed away, you may bargain with the past, using “What if…” and “If only…” statements. One patient told us after the loss of a friend in her support group, “I kept asking myself, ‘What if I had visited her more often in the hospital? What could I have done differently?’”

Bargaining offers a sense of control in the face of something that is largely out of our control. In When Bad Things Happen to Good People, Rabbi Harold Kushner wrote, “If the reason for misfortune is moral rather than natural, we can persuade ourselves that we can control it. If guilt is the price to be paid for the illusion of control over nature, many people have seemed willing to pay it. In other words, if we can convince ourselves that we are responsible for sickness, for someone’s death, then we can prevent sickness and death by changing our wishes and our behavior.”

Depression

Depression is another common and understandable stage of grief. Whether you’re dealing with your own diagnosis, the loss of a loved one, or both, loss can trigger an immense and complex constellation of feelings. PH patients are forced to confront the loss of both life and lifestyle many times over the course of their journeys with PH. Losing someone you care about or witnessing a friend or family member’s physical decline can stir up feelings of deep sadness.

When you’re feeling sad or depressed, you may be tempted to focus on the bright side to the exclusion of your negative feelings. While the desire to push aside negative thoughts is almost always well-intended, positive thinking can sometimes come at the expense of your true feelings and experiences. Sometimes life is sad. Allowing ourselves to embrace pain and suffering can help us move through these difficult feelings more quickly and completely.

In some cases, however, intense and enduring reactions to loss can turn into major depression. Someone suffering from major depression may feel afraid, isolated, hopeless, anxious, powerless, or incapable of carrying out everyday tasks for weeks and months at a time. Manifested over the long term, depression is a serious illness that requires professional assistance to overcome. Learn more

Acceptance

For most people coping with loss, the denial, isolation, anger and depression will begin to lessen over time. Acceptance does not mean that you will feel better and happy immediately. Acceptance is the point at which you can agree that your loss is a reality, in both thought and behavior. Some patients become quiet and reflective when they reach the acceptance stage. While acceptance isn’t a magical cure-all, it may be the first point in your grieving process at which you can imagine moving forward from your loss and making new plans for the future.

Survivor’s Guilt

Survivor’s guilt is a phenomenon experienced by disaster survivors who witness the deaths of friends and family members. Survivors who watch loved ones die in earthquakes and bombings are often left wondering, “Why not me?” People living with PH may also experience survivor’s guilt when they witness the suffering or loss of other patients. Some patients feel guilty that they’re feeling healthy or responding well to treatment when they see other patients in declining health. Others feel guilty because they’re alive when so many others have fallen to this disease.

Guilt implies responsibility. Why do we feel guilty for the course of our own disease? Why do we feel guilty because someone else passed away? Is it because we feel somehow responsible? If there was something that we could do to prevent the pain, suffering or death of another member of the PH community, chances are we would do it. Yet that nagging feeling of guilt lives on. Often, guilt is irrational, unrealistic and unproductive. What it can do, somewhat counter-intuitively, is allay a type of anxiety. If you are somehow responsible for the course of disease in someone else, perhaps you can control your own health as well. Sadly, this is a fallacy. While there are some things about our health we can control and maintain, often the course of an illness is out of our control. The illusion of control is comforting, but it’s just that — an illusion.

Survivor’s guilt can result in a number of very complicated experiences and feelings. It is important to recognize these in order to work through them. If you feel you may be experiencing survivor’s guilt, stay on the lookout for the following manifestations:

  • Depression, guilt and grief are often intertwined and difficult to tease apart. Once caught in a cycle of guilt, it can be difficult to think of much else, which can lead to prolonged feelings of sadness and despair. Depression may present itself as deep sadness, hopelessness, isolation, crying, difficulty concentrating, being unable to find pleasure in pleasurable activities, or a lack of motivation.
  • Anxiety can arise from some of the misperceptions and distortions that go hand in hand with survivor’s guilt. It can be difficult to feel at peace with your daily life when you feel responsible for someone else’s suffering or guilty for being alive. Take the time to challenge irrational thoughts when you can identify them. Take the time to learn new techniques for reducing anxiety in your life (see Additional Resources).
  • Psychic numbing refers to the tendency to tune out emotions in order to function. Sometimes it just feels easier to shut off feelings and thoughts than to face guilt, anxiety and pain. While this tactic can be temporarily adaptive, it’s not generally considered the healthiest option. Sometimes people who bury their feelings also choose to withdraw socially, so it’s important to keep an eye on yourself if you start to isolate from friends and family.
  • A search for meaning is another common manifestation of survivor’s guilt. After a loss, it’s important to work towards reestablishing a sense of meaning. When you’re confronted with death, you may experience a shift in perspective. Some things may matter less than they once did, and you may question the purpose or point of life. In Prozac Nation, Elizabeth Wurtzel summed this idea up well: “It all seems pointless in light of the fact that we are all going to die eventually. Why do anything — why wash my hair, why read Moby Dick, why fall in love, why sit through six hours of Nicholas Nickelby, why care about American intervention in Central America, why spend the time trying to get into the right schools, why dance to the music when all of us are just slouching toward the same inevitable conclusion?” While the struggle to reestablish meaning can feel hopeless at times, over time, it is possible to regain your footing.

Moving Forward

Coping with Grief

As you consider and reflect on how these stages affect you as a patient and as someone who cares deeply for others living with PH, it is important to realize the complexity of your position. You are working hard to manage your own physical and emotional health. You are also working hard to provide support and connection to others in similar positions. Don’t underestimate the depth of your connections with other PH patients. There are few things that forge friendship and intimacy as quickly as a rare disease. It’s hard to find people who “get it.”  When you do, the bond can be fast and strong.

For these reasons, it is critical that you learn not to judge or criticize your grief experience when you lose a friend to PH. Ralph Waldo Emerson wrote, “Sorrow makes us all children again — destroys all differences of intellect. The wisest know nothing.” Though it can feel terrible, confusing and unreal, try to let your grief be what it needs to be. A common misunderstanding about the stages of grief is that they must occur sequentially. This is not true. Grief is messy. You may find yourself depressed, angry, bargaining and accepting all in the same hour. You may think you’ve mastered one stage and are on to the next when, out of nowhere, you hear, see or smell something that brings you back to where you were yesterday.

In A Grief Observed, C.S. Lewis wrote, “In grief, nothing ‘stays put.’ One keeps on emerging from a phase, but it always recurs. Round and round. Everything repeats. Am I going in circles, or dare I hope I am on a spiral? But if a spiral, am I going up or down it?  How often — will it be for always? — how often will the vast emptiness astonish me…?”  This quote captures the confusion and seemingly hopeless nature of grief. Fortunately, while you may never forget or move past your suffering completely, the intensity of grief eventually subsides. Perhaps the author Dodinsky stated it best: “Grieving is a necessary passage and a difficult transition to finally letting go of sorrow — it is not a permanent rest stop.” When you find yourself in the throes of grief, take some comfort in the knowledge that you won’t feel this way forever.

Finding New Meaning

It may be hard to make sense of life after a loss precisely because loss can be an overwhelming and disorienting experience. There is no reason for one person to fall to a disease that affects another more mildly. How can we find meaning in spite of the apparently random nature of life events? The answer to this question varies from person to person. Some people choose to engage in activities that help them find meaning externally, be it through volunteering or supporting others navigating rough waters. Others spend time reflecting on and investigating their thoughts and feelings to find internal meaning and acceptance. Still others seek meaning and understanding by turning to their faith or a higher power. 

To determine which path will work best for you, reflect on who you are and how you’ve successfully dealt with difficult situations in the past. Do you cope best with help and support from someone else?  Do you cope better on your own? Who in your life do you feel comfortable sharing feelings and vulnerabilities with? What do you believe happens after death? Do you believe your relationship with the deceased is over or that it’s taken on a new form? These are some of life’s toughest challenges and questions, but they are worth engaging. It can be helpful to find someone you trust and mull these issues over together.

Quick Tips: Some Do's and Don’ts

(Adapted from Colgrove, et al., 1991)

Do:

  • Seek support from those who are able to give it. A hug can go a long way.
  • Talk to others who have experienced loss.
  • Talk or journal about the meaning of loss to you and the things you’re going to miss about the deceased.
  • Find a routine and stick to your new schedule, even if you feel you’re just going through the motions.
  • Recognize your feelings for what they are rather than why they are. Acknowledging a feeling can help you work through it.
  • Use writing, art and music to express and explore your feelings and thoughts.
  • Be forgiving and patient with yourself. It’s all right to make mistakes or lose your concentration.
  • Be good to yourself. Get the rest you need, do things you enjoy, and offer yourself small rewards for meeting your daily goals.
  • Give yourself time. Time does heal, but just how long it takes to heal varies considerably from person to person.
  • Seek guidance from someone you trust who can offer both wisdom and empathy.

Don't:

  • Try to make major life decisions too quickly.
  • Numb your pain with depressive chemicals such as alcohol or other drugs.
  • Deny your feelings.
  • Isolate or hide out from yourself and others
  • Expect every day to get better. Accept ups and downs.

Additional Resources

  • A Grief Observed, C.S. Lewis (Harper Collins, 1961)
  • How to Survive the Loss of a Love, Melba Colgrove, Harold Bloomfield, Peter McWilliams (Prelude Press, 1991)
  • On Death and Dying, Elisabeth Kübler-Ross (Macmillan, 1969)
  • On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss, Elisabeth Kübler-Ross and David Kessler (Scribner, 2005)
  • Survival Guilt, Aphrodite Matsakis (New Harbinger, 1999)
  • When Bad Things Happen to Good People, Harold S. Kushner (Avon, 1981)
  • 52 Proven Stress Reducers

By Virginia Maril, MPsy, Texas Woman's University. Medical review by Tania Von Visger, APRN, MS, CNS, CCNS, PCCN, The Ohio State University Medical Center.

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

 

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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.