Health and Wellness
Grief and Loss in the MS Journey
Written by Maryann B. Hunsberger
Four months into my disability, an able-bodied neighbor told me I should “get over” not being able to walk. She told me she knew exactly what I was going through because she was running the family business instead of living her dream of hoofing in the chorus line at Radio City Music Hall. As I sat in my wheelchair wondering who would walk my child home from school, buy groceries or cook dinner for my family, I felt that no one on earth knew how to show support for a newly disabled person who is grieving her losses.
Lara Krawchuk, MSW, LCSW, MPH, a clinical social worker in West Chester, Pennsylvania, says it’s common for people in our culture to make grieving individuals feel uncomfortable. “Disability is an ambiguous loss, which makes it trickier. The losses aren’t always obvious. If someone is still working, still has a family, or is still alive, people tell them to be grateful for what they have instead of supporting them. People try to force a happy face on them when they aren’t ready for it, because ours is a very grief-phobic culture. Nobody can tell someone how to grieve or how long to grieve.”
Krawchuk, a professor at the University of Pennsylvania who teaches clinical social work practice and a class on loss through the life cycle, has worked with many MS patients. She says that when MS patients lose the ability to physically function as they used to, others frequently fail to acknowledge that loss. “Grief is often under-recognized, unrecognized, or devalued. If nobody calls your loss a loss, you don’t call it a loss. You don’t have words for your grief and you don’t have a way to make sense of what all of these losses mean to you.”
Krawchuk says that loss often begins for the MS patient even before diagnosis. “From the minute that MS patients feel something is wrong with their body, even when they can’t pinpoint what it is, losses start to pile up. They lose trust in their own bodies and in the belief that their bodies will take care of them if they take care of their bodies. They can lose trust in people to support them. The long wait for a diagnosis causes some patients to lose trust in the medical system. Finally, the tricky nature of the disease makes people lose faith in themselves. They think they are losing their minds because they don’t know what is wrong with them.”
A New Way of Looking at Grief and Loss: Our Experiences Are Unique to Us
Elizabeth Kubler-Ross introduced the theory of the Five Stages of Grief when she published On Death and Dying in 1969. She identified the stages as denial, anger, bargaining, depression, and acceptance. In the past ten years, thinking has shifted away from this model.
Krawchuk explains, “Because of this theory, people think they are supposed to go through stages, but that doesn’t fit with chronic grief, such as a chronic sorrow that may reshape and change throughout your life. The stages don’t work for that. The new wave for grief theory is not about stages but about figuring out what grief and loss mean to the individual. It’s more of a process than a destination or a goal. It’s a lot messier, but it’s a lot more real.”
Since grief has unique features for each individual, it’s important to recognize that all feelings of grief are valid. “One person with a new diagnosis might be angry, while another might be sad and another might be shocked. There is no one right way to grieve. Common emotions are sadness, sorrow, anger, guilt, regret, and frustration. I have counseled people who think they are crazy because they experience varying emotions, but I tell them that any emotion – except for wanting to harm themselves or someone else – is acceptable. It’s imperative to have someone help you get through intense emotions, because it’s too hard to do alone.”
Krawchuk has counseled many patients who don’t even realize they are grieving. “I will list their losses and ask if they have ever thought that they might be grieving because their relationships have changed, their health has changed, or their job has been lost. The loss of hopes and dreams are the hardest thing, because family members are usually afraid of these same things.”
Complications can arise when family members and patients experience grief in different ways. Since our experiences are unique to us, nobody else can fully understand what we are going through. Nor can we fully understand someone else’s grief. “One person in a family might go through one emotion while grieving, but their loved one might experience grief differently. They are on the same roller coaster and can’t get off. But, one is in the front car and the other is in the middle or back car. Although the ride is the same, the experience is different. They can’t understand why the other person isn’t reacting like they are. This can make people unable to support each other. Therapists try to help people to bridge the gap between their experiences, helping people navigate and find strengths, commonalities, and differences.”
Sudden Temporary Upsurges in Grief
Even Kubler-Ross eventually acknowledged that the stages weren’t meant to be seen as a ladder with a final destination, and that people may skip stages or go back and forth. Krawchuk continues, “There is no right visible path, no ladder with acceptance being the finish line. The goal is to feel less distress, but the race can be run over and over again. Since MS is chronic, it makes sense that the grief will also be chronic when recurrences happen. But with these recurrences, the grief usually won’t have the same intensity.”
Grief author Therese Rando called these episodes “Sudden Temporary Upsurges in Grief.” Krawchuk notes, “MS patients can have these upsurges forever as their illness changes or as they bump up against something else they can’t do. Realize that this is perfectly normal and acceptable. Don’t let anyone tell you that you are flawed for having these grief surges.”
Krawchuk says something positive can come out of these upsurges. “It makes no sense that you accept something once and you are done with it, because the disease is always present. When a patient thinks he or she has accepted the situation, but has an upsurge in grief, that doesn’t mean the person is weak or hasn’t been handling their situation well. It just means that this is typical of MS. Sometimes, you need to work things through again. In fact, with each flare-up, patients might learn to make more sense out of what is happening to them. This awareness can be part of the process of lessening grief.”
The Path to Lessening Grief
Many MS patients may be sad and hurting about their diagnosis, but the pain does lessen for most people with time and effort. “People should feel empowered to speak up if they are suffering. For many people, healing comes from telling their story, whether telling loved ones or outsiders who can provide support without their own needs clouding the issue. Some people need to tell their story repeatedly as their illness changes. Speaking at groups, calling hotlines, talking to therapists, and talking to a person’s health team can be helpful. Voicing one’s feelings can empower patients to know that it’s okay to need what they need.”
Perhaps the most important aspect in dealing with grief is to recognize who is supportive and who is not. “Figure out who is helpful to you and overtly reach out to those people. That’s critical. Just because someone is well meaning, doesn’t mean he or she can help. You are the boss who decides who is helpful. If patients can’t think of anyone who supports them in a way that feels good to them, they need to figure out where they can get that support. It doesn’t matter where you find support. If an internet chat room helps more than a professional or religious organization, recognize this.”
The second most important aspect is figuring out what this experience means to and for the patient. “Patients need to find meaning when nothing makes sense. They ask, ‘Who am I now?’ and ‘What will my future be?’ The final source of support – and a good way to figure this out – comes from patients expressing themselves, whether through talking, journaling, doing art, writing, or any form of expression that helps them come up with a manageable solution. This helps to honor the MS experience.”
Be Sure to Use Healthy Methods of Distraction
While some people prefer to talk or write about their experiences, some prefer to distract in other healthy ways. Krawchuk suggests the following examples of healthy distractions:
1. Read a book
2. Laugh while watching a funny movie
3. Go swimming
4. Pray or meditate
“These are all healthy ways to distract from the illness. Only the individual knows if what is going on is helpful. It’s important to be open to trying different things.”
Krawchuk identifies the top four unhealthy methods of distraction, which should be avoided if a patient wants to succeed in working through grief. The unhealthy methods are:
1. Bottling up feelings. “If there is pain and it feels like it needs a voice, don’t stuff it in. Write it down, talk to a pastor or a rabbi, talk to a therapist. Otherwise, grief can turn into clinical depression, rage, or isolation from loved ones.
2. Using drugs and alcohol.
3. Pushing away friends and family.
4. Ruminating on guilt. “It’s dangerous for patients to dwell on what they think they should have, would have, or could have done.”
Recognize and Accept Your Own Style of Grieving
It’s important for MS patients to understand their own method of grieving. “Some patients might need to take an hour a day, or one day a week, to feel the grief. It’s a skill to learn how to take out the grief and put it away. Workbooks on managing anxiety and cognitive behavioral therapy can help a person to learn this skill. Mindfulness meditation – being with the suffering without judging it – is a wonderful skill for managing pain. And a therapist can be a patient’s safe place to talk about his or her pain, thereby lessening the pain the rest of the week.”
Krawchuk says people are enormously resilient beings who learn how to grow, thrive, and live well within the realities of their own experiences. “MS patients become good at knowing how to express themselves, how to seek advice and support, and to not take negative comments as their fault. You don’t need to own every well meaning, but missing-the-mark, advice. I have seen people come through grief knowing much more about themselves.”
Many of Krawchuk’s patients have succeeded in working through and alleviating grief. Although the effort can be difficult, working through grief leaves room for pride and growth. “It’s good to feel proud of getting up and going to work even when exhausted. A parent can be proud of getting the children to school on time. A care partner can be proud of supporting their partner. People can be proud of growing as human beings who don’t let the small stuff drag them down. The takeaway message is to not do it alone and to not listen to people who tell you to put on a happy face. Denying grief is wrong and dangerous. These people might mean well, but they don’t know what they are talking about. It’s natural, normal, and acceptable to have grief when there is loss.”
CONNECTING WITH GRIEF
MSAA’s Life Coach Anne Marie Buck, MS, states that when grieving the losses that MS can cause, several steps can be helpful.
- Remember to be kind to self. “Listen to what you are thinking. If you are being judgmental or critical, substitute compassion and say to yourself what you would say to a good friend who is grieving. Healing takes place with nurturing and kindness.”
- Look for ways to reduce losses. One of Buck’s clients stopped leaving the house when she could no longer walk. Eventually, she transitioned to a scooter and could go to restaurants or watch her children play sports. “Opening up to new possibilities can help return to life the things that need not be lost.”
- Don’t let fear of grief stop progress. “Resisting our emotions can increase our discomfort, like holding a beach ball underwater. It takes a lot of energy, and ultimately, the ball will rise to the surface anyway. Think of grief as waves at the beach that come and go. Each wave has a crescendo and eventually disappears. Some waves are strong and some are mild. Make peace with that ebb and flow and realize that grief will come and go, as is true with all emotions.”
- Schedule time for grief. “Make an appointment with grief. Picture the life you thought you’d have, and connect with the grief and loss you feel. Wrap yourself in a warm blanket like a big hug. Connect with your grief through music, poetry, novels, movies, or anything that can help you to commune with your grief.”
- Don’t resist grief. This can cause our bodies to tense, which brings tension into our lives. Therefore, Buck stresses paying attention to how the body feels when it’s expressing grief. “Does your face flush? Do your eyes tear? Does your stomach wrench? Let that expression go forward. Don’t resist it.”
- Express your grief. Talk to a supportive person. Journaling or drawing can be useful, since some find it helpful to use the arts to communicate grief. “Expressing grief is an important facet in beginning to heal.”
- Use rituals. Rituals can help express emotion and move people past a grief episode that is ending. “Take a journal, tie it with a black ribbon, and put it aside to show that this episode of grief has passed.”
Buck says it can be helpful to realize that when the grief passes, it’s not over forever. “Grief is part of life. Each wave of grief can help us be more resilient, wiser, and more prepared for the next wave. Start to picture the life you can actually have and take steps toward creating it.”