Embracing Change Together
Relating to Others When MS Enters One’s Life
by Christine Norris
No one understands the uncertainty of change more than a person with multiple sclerosis. The course of the disease is often unpredictable, which makes things difficult when thinking about the future. As an individual’s self-image changes according to the symptoms that appear, relationships with family, friends, and coworkers also change. With the proper help and guidance from professionals and the fortitude to work through the process of redefining a person’s identity, one can enjoy a new lease on life and have hope for the future.
“No one asks to have MS. Yet, in some ways, because of MS, individuals have to deal with their mortality earlier, and the meaning of life earlier than they might have,” says Peggy Walsh, MS, a psychotherapist in private practice in Bala Cynwyd, Pennsylvania. Walsh counsels many newly diagnosed patients referred to her from the University of Pennsylvania MS Center in Philadelphia. “This often means that they have relationships that matter earlier than others. It’s almost like a mid-life crisis. They don’t want to waste time. They want to find supportive people who appreciate them for who they are now, not who they used to be.”
This self-discovery, however, takes time to achieve. “When I initially see patients who are newly diagnosed, they’re usually in some denial. I think that denial is part of the diagnosis. It’s both a gift and a curse,” Walsh says. “What I mean is that denying some of the possibilities of the disease can actually give them some hope. They don’t know what path their life is going to take. The negative part is that if they continue to deny the diagnosis, they don’t plan ahead to handle [symptoms such as] the fatigue factor, and they don’t get the medications they need to control their condition.”
Walsh equates this stage to one of the five stages of grieving developed by Elisabeth Kubler-Ross, a world-renowned psychiatrist, expert on death, and author of On Death and Dying. “These stages are also experienced by MS patients and other chronically ill people,” says Walsh. The five stages are: 1. Denial and isolation, a state of shock where the person can’t believe it is happening to him or her; 2. Anger, where the person is mad at the world; 3. Bargaining, where the person hopes to postpone the inevitable; 4. Depression, where the person experiences a profound sense of loss, status, and esteem; and 5. Acceptance, a state in which the person quietly recognizes the inevitable.
“It’s also important for people who are newly diagnosed to realize that their partners are going through the same stages and also may be in a state of denial,” says Walsh. “The people close to them don’t want to accept that maybe some things are going to change in their relationship. They may be angry with the disease and fearful of the future.”
This dynamic can be problematic if it’s not discussed, says Kathleen Leahy, MSW, a Licensed Independent Clinical Social Worker (LICSW) in the state of Massachusetts. A social worker for more than three decades, she has held the position of social worker at The Mount Auburn Hospital MS Comprehensive Care Center in Cambridge, Massachusetts, for the past decade. “I have found that everybody is in a crisis mode in the beginning; but usually, the patients are more actively trying to get some answers, while their families are often still in denial,” she says. “This can become a serious issue in their relationship.”
According to Leahy, this denial experienced by family members often comes from the less “visible” symptoms of the disease, such as fatigue. “Even though patients may not have trouble walking or other highly visible symptoms, they may be fatigued. Their spouses, therefore, may not perceive that the disease is impacting them in a major way,” she explains. “On one hand, patients don’t want anyone to view them differently; on the other hand, they want their spouses and other family members to have some empathy for what they’re going through.”
Getting the Support One Needs
Generally, most people with MS need to get through these stages before they are ready to reach out to others. Many men and women with MS find that joining a support group can help them cope with the uncertainties of the disease. The idea behind a support group is a basic one – give people who share a common interest, trait, or problem, a place to meet and to discuss relevant issues and experiences. MS support groups give members the opportunity to learn more about the disease, to exchange feelings and ideas, to make new friends, and to get out of the house and socialize.
“Because these are young people I usually see, MS support groups can initially be depressing and overwhelming, because some of the people are often sharing how sick they are,” says Walsh. “I tell my patients to keep trying to find a support group with people who are going through similar experiences to their own. I advise them not to give up. There’s something energizing, valuable, and supportive about being with other people who have the same illness.”
Leahy also sees the value in sharing feelings and experiences with others through support networks, but she says that these networks don’t always have to be the classic “support groups,” especially for the newly diagnosed. “Often individuals who are newly diagnosed don’t want to attend a support group with MS patients who are severely disabled. This is because they’re afraid of seeing something scary that may be in their future,” she explains.
Instead, Leahy recommends that these patients get the support they need in other “less threatening” ways, such as attending a lecture on MS at a local hospital or other venue. “These lectures always have a social aspect to them, and offer an informal way to meet others with the disease,” she says.
“At our center, we also have MS patients who volunteer to sit in our waiting area to talk to families and patients while they’re waiting to see different members of our staff,” says Leahy. “This can be a really positive experience for the newly diagnosed, to meet someone who has lived with MS for awhile, and who has lived well with the disease.”
Leahy has found over the years that “most MS patients and their families cope better than they think they will. An MS diagnosis doesn’t happen in a vacuum,” she says. “Patients and their families bring what they have been going through in their lives to it. That’s why I try to encourage families to draw upon what has worked in the past to deal with new challenges or situations. Sometimes just sitting down and working things out together gives them the strength to cope. They build on these past inner resources.”
Another hurdle families must face is the decision of keeping the MS a secret. While Leahy understands why some patients may want to keep their diagnosis from co-workers or neighbors initially, she usually encourages them to share the news with others as soon as they’re ready. “Keeping the MS secret adds stress to your life, but it’s a process that people must go through on their own terms. I try to help them by discussing their concerns and what makes sense to them,” she says. “What I have found is that when patients are ready to share their MS diagnosis, it can help with their feelings of helplessness and uncertainty. People often will find that they get more support, even though they long feared that others would treat them differently. Most people are willing to help out and are very understanding.”
Keeping MS a secret from one’s children can especially be isolating not only to the parent with the disease, but also to his or her child, who senses that something is different at home. This can be frightening for a child. “It’s important to remember that parents are the very first and most vital teachers in the lives of their growing children. Parents teach their children from the very beginning that life is indeed a journey, marked with change and transition,” says Cindy Richman, MSAA senior director of services. “By helping children understand multiple sclerosis, parents can help to reduce any fear or anxiety while showing them the importance of loving and caring for one another.”
Walsh agrees: “Most children are pretty good about accepting changes in their parents. The more direct that a parent can be about the disease, what it is as well as what it can and cannot do, the better. Because kids have a lot of curiosity, they’ll take in the information and move on.”
Leahy stresses that understanding the developmental stages all children go through, especially those stages during the adolescent and teen years, is crucial. “These years are never easy. Sometimes a patient will complain to me about her teenage daughter’s room being a mess and the fact that she doesn’t help out around the house. She perceives this as her daughter either reacting to her MS or being insensitive to her needs. I try to help the mother understand that it may not be for that reason; it may be because it’s a stage her daughter is going through.”
MSAA’s Richman agrees. “A teenager might be more horrified over the kind of car the parent drives or the fact that the parent might say ‘the wrong thing’ in front of a peer, or worse, show affection in front of his or her peer group,” she says. “It’s important for the MS patient to note that it doesn’t always matter to a teenager if his or her parent is in a wheelchair or using a device; the problem is the fact that the parent is involved at all, and the same is true for parents without MS.” (Individuals with MS and their families can learn more through educational seminars held throughout the country by MSAA. For more information, please call MSAA’s Helpline at 800-532-7667, or visit MSAA’s website at www.mymsaa.org.)
Walsh emphasizes that while it’s important to have everyone in the family pitch in to help with daily chores, it’s important to know their limits. “Parents don’t want to put too much pressure on their kids and make them act as the parents, such as having a daughter care for a toddler every day after school,” she says. “People have to know when to investigate resources and support. Parents shouldn’t depend too much on their children.”
Dealing With Depression
“MS and depression is a huge problem that doesn’t get the attention it deserves, and it has devastating consequences, so it shouldn’t be ignored,” says Adam Kaplin, MD, PhD, assistant professor of psychiatry in the Departments of Psychiatry and Neurology at the Johns Hopkins School of Medicine in Baltimore, and the chief psychiatric consultant to the MS Center at Johns Hopkins. “The impact of depression should not be underestimated; not by patients, not by their loved ones, not by their care providers. Depression is treatable, and the goal should be to treat the depression into remission.”
According to Dr. Kaplin, clinical depression is extremely common in MS patients, with 40-to-60 percent of patients experiencing depression in their lifetimes, a rate three-to-10 times that of the general population. If left untreated, severe depression can sometimes lead to suicide. Dr. Kaplin cites a study that has found the suicide rate in MS patients to be seven-and-a-half times that for the age-matched general population.
“Clinical depression is more common in MS than in other chronic illnesses, including other neurologic disorders,” he notes. “It not only causes great personal suffering, but it can dramatically affect a patient’s function, quality of life, and longevity.”
According to Dr. Kaplin, multiple studies have suggested that depression is the primary determining factor in a patient’s self-reported quality of life, with a greater impact than other variables investigated, including physical disability, fatigue, and cognitive impairment. He cites these studies in his contribution to a new book on MS entitled, Multiple Sclerosis Therapeutics, third edition, which was recently published by Informa Press. Other studies cited in the book associate clinical depression in MS patients with increased time lost from work, disruption of social support, and decreased adherence to disease-modifying treatment regimens for MS.
In this book, Dr. Kaplin also cites studies showing that, in many cases, clinical depression in MS patients may be caused by changes in the brain as a result of the disease process. Until these studies proved otherwise, says Dr. Kaplin, experts believed that clinical depression developed in MS patients due to the unpredictability of the disease and how difficult and exhausting it can be to live with a chronic disease. It’s important for MS patients and their families to understand that depression is caused by their MS and not by a personal weakness or failure to cope.
Due to these new findings, Dr. Kaplin urges MS patients and their families to receive a correct diagnosis and the proper treatment. He emphasizes that unlike depression in the general population that resolves spontaneously in roughly 75 percent of patients over an average of six-to-12 months, MS depression is unremitting and tends to worsen without therapeutic intervention.
The good news is that depression is one of the most treatable symptoms of MS, with the expectation that individuals who receive adequate treatment will enjoy a complete recovery. Dr. Kaplin wants the “same level of aggressive management for treating depression as MS patients routinely invest in managing other symptoms of their disease. Many individuals are prescribed physical therapy and rehabilitation to enhance ambulation, or urologic consultation for bladder management, and the same degree of care should be given to treat depression.”
Criteria for Major Depression
Dr. Kaplin recommends that physicians use The Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the primary diagnostic reference of mental health professionals in the United States, to diagnose clinical depression in MS patients. The DSM-IV criteria for “Major Depression” requires the presence of five or more of the following symptoms during the same two-week period, accompanied by functional impairment. Additionally, at least one of the five or more symptoms that are present must either be depressed mood (listing #1) or loss of interest/pleasure (listing #2).
1. depressed mood
2. loss of interest or pleasure (anhedonia)
3. feelings of worthlessness or inappropriate/excessive guilt
4. fatigue or loss of energy
5. insomnia or hyersomnia
6. diminished ability to think or concentrate, or indecisiveness
7. significant weight loss when not dieting or weight gain, or decrease or increase in appetite
8. psychomotor agitation or retardation
9. recurrent thoughts of death or suicide.
Moreover, according to Dr. Kaplin, to correctly diagnose Major Depression in MS patients, the physician must take into consideration the effects of medications prescribed to manage symptoms or the course of the disease; worsening fatigue in the latter half of the day (a sign of depression); and the failure of the person to not move on after a reasonable period of time to accept the disease. “A failure to progress beyond the acute shock of being afflicted with MS after many months or years should raise a question about whether or not a clinical depression has begun,” he explains.
The Love Connection
Whether married, cohabitating, or searching for that special someone, a person with MS may have difficulty feeling desirable or worthy of another’s love and attention. “The idea of romance often doesn’t seem possible since their body image and self-image changes very quickly after the diagnosis,” says Walsh. “I try to help them see that how they may see themselves – possibly as an unattractive disabled person – is not necessarily how they appear to others. They need to share those feelings with their partner or future partner so they may see that others do find them attractive.”
Dating can be especially daunting until the person with MS can accept that the disease does not define them. It’s only a small part of them. Walsh explains, “When MS is thrown into the mix of the usual trauma of dating, two different struggles come into play; they may ask, ‘who would want me, and how do I pick a partner?’ In a way, MS helps them find better partners because they weed out the lousy dates and start to find people who are more accepting and caring.”
Walsh also says that her patients have found that their friendships also improve and deepen after their MS diagnosis, but it can be a painful period of rediscovery. “Often they find that their former friends were more of the fair-weather variety. After a few years they find people who are less selfish and more responsive. Many of my patients tell me that they now have better friends because of their MS. Their relationships are deeper because they’re not afraid to talk about the harder issues.”
Walsh equates these relationship changes as “little deaths,” or losses that one must work through and grieve before being able to move on. “The person with MS may not be able to go hiking with a certain group of friends any more but maybe can do water aerobics with another group. The person with MS may not be able to or even want to go out to a club and party all night, but will be able to enjoy a quiet night at home with a few close friends,” she says.
It’s also important for the newly diagnosed MS patient to grieve the “little death” that may be experienced from no longer being able to work in the same field or to participate in a particular activity, says Dr. Kaplin. “Once the person with MS stops asking ‘why me?,’ he or she can begin asking, ‘what can I do to make my life better?’ ”
Dr. Kaplin gives the example of a workaholic father who found a new job less demanding than his old one once he was diagnosed with MS. “With more time at home, he has discovered the joy in raising his kids,” he says. Another patient whom Dr. Kaplin treated felt that he had to stop coaching his daughter’s softball team after he had to start using a cane from the effects of MS. “He felt that he had to stop because he could no longer show the girls how to throw, catch, and bat. When I suggested that he find an assistant coach to help him, he did, and the team won first place that year,” he recalls. “These examples show that those with MS can rise to the occasion in the face of adversity, often better than individuals who have never had to overcome similar hurdles.”
The effects of MS can be particularly demoralizing for those who enjoy certain athletic activities, such as long-distance running. “The person has to work through the loss and grieve it in order to move on to examine what else is out there, such as bicycling or swimming,” says Walsh. “It’s also important to grieve the loss of the image of the individual as a runner.”
Care Partners Need Support Too
John Lennon’s famous lyric, “Life is what happens to you while you’re busy making other plans,” hits home for most care partners of MS patients. Since MS usually strikes men and women at the prime of their lives, often without warning, their spouses or other loved ones take on the role of care partners without support systems in place to help them cope.
Because most wives, husbands, or other family members do not consider what they’re doing as “caregiving,” they often don’t seek the help they desperately need to fulfill this new role. Instead, they often sacrifice their own needs day in and day out to offer care. Unfortunately, this selfless devotion often makes care partners neglect their health and emotional well-being, says Dr. Kaplin. “The vast majority of care partners that I see have no social life. They’re with their loved ones 24/7. This is not a healthy situation for them or for their care recipients,” he explains. “Care partners are no good to their care recipients if they are ‘burnt out.’ I tell my patients that their loved ones are not abandoning them if they go out for an hour or two to a movie or to a coffee shop with a friend. They need to give themselves permission to recharge their batteries. If they don’t take care of themselves, they are going to be depressed and resent the situation more. When they come back recharged, they’ll be better able to handle the demands of being care partners.”
Moreover, says Dr. Kaplin, if care partners continue with this personal neglect, they will no longer be able to provide proper care to their patients. To be at their best, care partners must address their own needs and feelings. Caregiving can be physically and emotionally stressful. With a growing list of new demands and less time to complete them, it’s only natural to experience a wide range of negative emotions.
The most common negative emotions associated with caregiving are:
Resentment. It’s difficult not to feel resentment when other family members aren’t pitching in to help or if the care recipient is making inordinate demands, such as three-course meals when the care partner is lucky to have enough time to pick up a pizza, according to Leahy. To cope, care partners must learn to delegate certain tasks to other family members in order to give them some free time. They also need to set limits on the time and effort they put into caregiving. “For example, with neighbors offering to help, care partners must be specific in ways that can lessen their load, such as driving the kids to school and picking them up, or calling before going to the store for a list of items to pick up,” she suggests.
With this newfound time, care partners should do something they enjoy. Ideas include joining an exercise class, taking in a movie on a regular basis, or gardening – the possibilities are endless. “The important thing is not to feel guilty and to find something that was once pleasurable and to start doing it again,” says Dr. Kaplin.
Guilt. According to Dr. Kaplin, there are two major themes to caregiving – depletion and guilt. The depletion is emotional, it’s physical, and it’s financial. Oftentimes that’s where the guilt comes in. Many individuals feel that it’s their duty to provide “selfless care” but that’s not humanly possible without support from others.
Anger, sadness, depression, feeling overwhelmed. Care partners also experience Kubler-Ross’ five stages of grief. While these feelings are normal, care partners should seek medical help after six months if they are still depressed, says Dr. Kaplin. If not comfortable talking to a psychologist or doctor about their problems, care partners should reach out to a close friend, spouse, clergyperson, or support group member. Ignoring these signs of caregiver stress will only make matters worse.
Leahy points out that joining an MS caregiver support group also can help relieve the stress of having too much on your plate and feeling overwhelmed. She also notes that most MS centers also offer support groups for other family members, including children, adolescents, and teens, to help them cope. (Readers may find a listing of centers belonging to the Consortium of MS Centers [CMSC] by visiting their website at www.mscare.org and selecting the “MS Centers Directory” listed on the left side of the screen. Individuals without access to the internet may contact MSAA’s Helpline at 800-532-7667 to speak with a Helpline consultant, who would be happy to assist in finding the closest MS center.)
Talking with others who are going through similar experiences can help care partners develop strategies for problem solving and communication. Leahy adds that these contacts are also invaluable in providing resources and tips to obtain the specific help needed.
Another good way to better handle the stresses of being a care partner is to take an educational course on caregiving. These courses are offered though local senior centers, community colleges, churches, and other civic groups. By learning more about their new roles, families can establish a new level of normalcy and regain control of their lives.
For answers to questions about MS in general, or to discuss specific issues relating to MS, relationships, and the family, please call MSAA’s Helpline at (800) 532-7667. Trained consultants are happy to help by providing information, support, and assistance.
Consortium of Multiple Sclerosis Centers (CMSC) at www.mscare.org
Hill, BA, Multiple Sclerosis Q & A: Reassuring Answers to Frequently Asked Questions, Avery Publishing, New York, 2003.
Kalb, RC, PhD, Multiple Sclerosis: A Guide for Families, Third Edition, Demos Medical Publishing, LLC, New York, 2006.
Kraft, GH, MD and Catanzaro, M, RN, PhD, Living With Multiple Sclerosis: A Wellness Approach, Second Edition, Demos Publications Inc., New York, 2000.
Courtney, SW, Mommy’s Story: An introduction for younger children to learn about a parent’s MS, Multiple Sclerosis Association of America, Cherry Hill, NJ, 2006. (This book is available free from MSAA. To obtain a copy, please call 800-532-7667, extension 129.)
Additional note: For more resources on relationships and MS, as well as books on several other topics relating to MS, readers may take advantage of MSAA’s free Lending Library. For more information, please refer to the “Spread the Word” column on page 64 of this issue.
About the Author
A former editor of The Motivator, Christine Norris is now a freelance writer specializing in health and wellness.