Signs Of MS In Women

Adaptation And Adjustment
 
THE UNCERTAINTY OF the initial symptoms and the brief sense of relief at having a name for them are often followed quickly by shock and disbelief. Deep down, we all think of ourselves as invulnerable to illness. It is difficult for a robust, healthy 30-year-old to accept the fact that he or she has a chronic illness that is progressive and potentially disabling. Most people with MS will assure you that they never really "accept" it (any more than they would accept a lifelong electrical storm that sends periodic lightning bolts into their home). What people eventually seem to do is to confront the reality of the disease and learn to adapt to its presence in their lives. 
 

Signs Of MS In Women

This adaptation is important because without it the processes of coping and effective problem-solving can be short-circuited. Those who struggle to "accept" MS may find themselves mired in frustration as symptoms worsen or new ones are added. This frustration may be heightened by well-meaning relatives and friends who become impatient for the person to "get on with life and stop thinking about MS all the time." Adapting to the presence of MS is an ongoing and challenging process; patience, understanding, and good communication will help ease the process for everyone concerned.
 
Challenges To The Self-Image
 
MULTIPLE SCLEROSIS IS a tough pill to swallow, in part because it is so "personal." MS-related limitations can interfere with many cherished abilities, including walking, seeing, controlling the bladder, or driving a car. The person with MS may find many valued facets of his or her self-image undermined by these changes.

"If I can't play outside with my kids (go on a class trip ... coach a team ... bake a cake), what kind of parent am I?" is the sort of question people may ask themselves. Sadness, frustration, anger, and feelings of worthlessness can ensue. Family members may find it hard to comprehend this intense inner struggle for the survival of a positive sense of self. They may see only its external signs, (e.g., irritability, emotional and social withdrawal), or a loss of interest in everyday activities.

Fortunately, for most people who have MS, disease-related changes challenge but do not overwhelm the self-image. Why? Because people are usually able to find other parts of themselves that they value, many of which are not physical. A mother with MS, for example, may learn that being a good parent does not just mean cooking elaborate meals or driving car pools, but is more directly related to providing the love and structure that children need to feel secure and realize their potential. A man who prided himself on his athletic abilities may discover a love of reading or a talent for writing that he never knew he had.
 
Grief

THE PROCESS OF renewing the self-image usually entails a period of grieving for those cherished abilities that have been compromised. Loss is a major issue for people living with MS. Many people feel that they have been robbed of their future. This loss of the future does not refer to premature death, which is rare in MS, but to the loss of their prior expectations for how life was likely to unfold. A person with MS might have had a promising career as a musician or a physician but now must follow a different path.
 
Grief is a healing and restorative process, but one that is accompanied by pain and sadness. Family members may experience some discomfort during this grieving process since it is often associated with a turning inward and feeling blue. However, grieving is critical to adjustment and may occur many times during the course of MS as the person is called upon to cope with new losses.

Moreover, family members will need to do their own grieving, as they experience the impact of MS not only on family relationships and shared activities, but also on their own lives. For some, the grieving process may take a long time and may be accompanied by depression. In fact, it is sometimes very difficult to distinguish a normal grief reaction from clinical depression, which is discussed later in greater detail. To find out more, you can check out Signs Of MS In Women.

Multiple Sclerosis Symptom Checker

MULTIPLE SCLEROSIS (MS) affects more than just the ability to walk. It can change the way people feel about themselves and their lives, the way they think, and even their ability to learn and remember. These emotional and cognitive effects of MS are not as visible or as obvious as a cane or a wheelchair. However, the psychological aspects of the disease are no less important than the physical changes that can occur. For many, changes in emotions and/or cognition are the most important problem. Let's review some of the common emotional and cognitive issues faced by people with MS and their families:

Multiple Sclerosis Symptom Checker

• Emotional responses, including the more common reactions people experience to the diagnosis and to life with MS; 
• Emotional changes, which encompass some of the more complex emotional experiences that are possible in MS; and
• Cognitive changes, including problems with memory, reasoning, concentration, planning and problem-solving, which can be caused by MS. 

The goals are to add to your understanding of these emotional and cognitive issues and their impact on family life, as well as to provide some concrete suggestions for undertaking positive change.
 
Emotional Responses to MS
 
MS IS A COMPLEX and unpredictable disease. Because no two people are psychologically identical, or experience MS in exactly the same way, each person's reaction to the disease will be unique. Although some of the early research in MS attempted to identify an "MS personality" that would predispose certain individuals to the disease or cause all people who have the disease to act in a certain way, it has been repeatedly demonstrated that no such personality type exists. A person's pre-MS personality, good or bad as it may be, is the same personality he or she will have after MS. And it is with this individual personality, and all its diverse traits, that a person will respond and react to the MS experience.
 
Some of the prior work in MS also described "stages" that people supposedly go through in their efforts to adjust to the disease. These "stage" models have typically been borrowed from cancer research and do not apply very well to chronic disease.

MS is an uninvited and unwanted guest in people's lives that does not go away. As a result, the person with MS does not go through a definite, orderly set of stages culminating in adjustment. Rather, adjustment is an ongoing, lifelong process that ebbs and flows with the unpredictable changes brought about by the disease.

Because each individual has a unique style and personal rhythm, which in large part determines how he or she will adjust, it is not particularly surprising that the process of adjustment seems to be more successful and comfortable for some than for others. Let us look at some of the emotional issues that arise as people try to incorporate MS into their lives.
 
Uncertainty And Anxiety
 
UNCERTAINTY AND ANXIETY set in as soon as the first symptoms appear. MS can begin in a variety of ways, perhaps with a strange tingling sensation or numbness, sudden loss of vision, or unexplained weakness. Uncertainty surrounds these upsetting and unexplained symptoms. "Is it a brain tumor?" "Am I going crazy?" In some cases, the uncertainty drags on for some time until a diagnosis is finally established. Many people actually experience a brief sense of relief when the diagnosis of MS is confirmed.

They are not happy about having the disease, but they are relieved to finally have an answer. In fact, in one study that looked at the diagnostic process in MS, the most anxious and unhappy patients following the diagnostic workup were those for whom no specific diagnosis could be confirmed.
 
Uncertainty does not evaporate with a confirmed diagnosis, however. Because the disease is unpredictable, people with MS are called upon to adjust to a lifetime of uncertainty about their health. They often do not know how they are going to feel or function tomorrow or next week, let alone several years down the road. In addition, there is uncertainty associated with the disease-modifying therapies that are recommended for relapsing forms of MS. These medications have been shown to reduce the number and severity of attacks and may slow disease progression; they are not, however, designed to reduce symptoms or make people feel better. Because of the way these medications function in the body, it is virtually impossible for any one individual to know the degree to which the disease-modifying medication is "working" at any given time. This much uncertainty can lead to a constant state of anxiety.
 

The effects of uncertainty and its attendant anxiety can include anger and irritability, indecision, difficulty in planning, feelings of helplessness, and pessimism about the future. Family members inevitably share in these feelings. As a result, all family members may find themselves looking for "anchors" - ways to reduce uncertainty and increase a sense of security and stability within the household. To find out more, you can check out Multiple Sclerosis Symptom Checker.

Multiple Sclerosis Awareness

Recommended Strategies For Family Coping

THE FIRST IMPORTANT strategy of the family should be to give MS, or the "uninvited guest," no more space in the household than it needs. As Dr. Peter Steinglass and his colleagues have so aptly phrased it, "The goal is to find a place for the illness while keeping the illness in its place." A family can develop and thrive only when the emotional and developmental needs of each of its members are being met. The family's balance is threatened when MS is allowed to drain more than its share of the family's financial, emotional, and physical resources. Instead of a family with one disabled member, the result is a disabled family.
 

Multiple Sclerosis Awareness

Similarly, it is important that the interests and activities of family members not be overly restricted by the disabilities of the person who has MS. In other words, families need to learn how to strike a reasonable balance between the interests and abilities of their disabled and nondisabled members. When guilt feelings cause family members to give up favorite activities in which the person with MS can no longer participate, the entire family may start to feel uncomfortable; the person with MS begins to feel guilty over the limitations on other family members while they, in turn, begin to resent feeling "disabled" by a disease that is not their own.The goal is for families to find a way to accommodate the limitations imposed by MS without allowing those limitations to impact every aspect of family life.

The second recommended coping strategy is often a bit more difficult for families to accept, because it involves hoping for the best while planning for the worst that might occur. Planning for the worst involves learning about the possible ways that MS can affect your life and trying to implement plans or strategies now that would cushion the blow if the worst came to pass. For example, a young woman with MS and her husband are starting to look for their first house. While the most exciting and romantic strategy might be to buy the three story Victorian they have always wanted, the more practical strategy might be to narrow the choice to houses that are all on one level. Then, in the event that the woman's walking difficulties become more severe, she will be able to enjoy her whole house without feeling restricted to one or another floor. 

Similarly, a couple in which one of the partners has MS might want to think more conservatively about the amount of money they are putting into savings. The savings will be there as a safety net if the family income is reduced because of disability. If the MS never becomes severe enough to threaten the family's income, the worst that happens is that more money has been put aside for retirement, a child's college education, or a wonderful vacation.
 
Many families resist this kind of planning strategy because thinking about "the worst" seems too frightening. There is almost a superstition that thinking about these possibilities will make them happen and pushing them out of one's mind will prevent them. Unfortunately, these kinds of beliefs can keep families perpetually off-balance; every exacerbation or change in the person s physical or cognitive abilities feels like an unexpected blow for
which family members are totally unprepared. Becoming educated about the potential impact of MS on the family, and taking steps to protect the family's financial, social, and emotional well being, can help each person feel less vulnerable in the face of this unpredictable disease.
 

Where Do We Go From Here?
 
THE GOAL OF this blog is to provide a general overview of the potential impact of MS on family life. The following posts explore in greater detail the issues that have been raised here. Each includes descriptions of some of the challenges that can arise as well as realistic strategies for enhancing each family's quality of life - now and in the future. To find out more, you can check out Multiple Sclerosis Awareness.

Information About Multiple Sclerosis

Disruption Of The Family's Rhythm
 
OVER THE YEARS, families tend to develop a rhythm of their own - a reasonably smooth and predictable way of carrying out the routines of daily life. Each of the adults in the household has, by spoken or unspoken agreement, taken on certain important functions in the household. As they grow and develop, each of the children also takes on an increasing number of age-appropriate chores and responsibilities. If one person in the family becomes unable to carry out his or her particular role(s), the rhythm of the entire family is upset. Whether it is recognized at the time or not, this shift in roles begins to change the ways in which family members interact and communicate with one another. The disabled person may begin to feel "sidelined" - out of the mainstream of family life. A spouse who needs to take on more and more of the responsibilities in the household may start to feel overburdened and deprived of the old partnership. Young children may gradually find themselves in a caregiver role that threatens their own feelings of security and well-being.  
 

Information About Multiple Sclerosis

Disruption In Family Communication
 
TALKING ABOUT THESE kinds of changes within the family can be very difficult for a variety of reasons. First, these changes tend to happen slowly and therefore outside of most people's day-to-day awareness. Families do not talk about them at the time because they are not aware that the changes are occurring. Second, people often have difficulty talking about changes in family life that are caused by symptoms they cannot readily see or understand.

A person who is experiencing MS-related cognitive changes or severe fatigue may find it difficult to describe to others how these symptoms are interfering with daily activities. Similarly, family members may become frustrated by their inability to see or understand why family life is not proceeding as smoothly as it once did. Third, family members tend to be quite protective of one another, with the result that painful feelings, questions, and concerns are often left unexpressed. No one wants to open a Pandora's box of stressful issues that have no apparent solutions. And fourth, people sometimes feel that "the less said, the better," as though talking about problems will confirm that they actually exist, and not talking about them will magically make them go away. The result of all this may be the "big, gray elephant phenomenon" entire family is tiptoeing around this big gray elephant in its midst and nobody quite knows how to mention it.
 
Important Resources and the Barriers to Their Use 

FORTUNATELY, A VARIETY of resources exist to help families live comfortably and productively with chronic illness. Healthcare teams, voluntary health organizations, educational materials, and various types of professional and self-help groups are some of the tools available to support families' coping efforts, Unfortunately, there also seem to be significant barriers to the effective utilization of these resources.

Some of the barriers are social and economic while others are much more personal and emotional. Access to quality healthcare is not universal in this country, and access to professionals with expertise in MS is even more limited. Particularly in this new age of cost containment and managed care, individuals who have MS may feel a growing pressure to monitor and manage their own care.

Of even greater concern, however, is the fact that many people do not make use of important resources even when they are readily available. Many families refrain from seeking help because of reluctance to acknowledge the potential impact of MS on their lives, or to think about MS more than is absolutely necessary. They may be afraid that thinking about current or potential problems will somehow make the problems seem more real. Other families seem to feel that seeking outside help or support is an indication of their own weakness or inadequacy; they would rather "go it alone." They do not recognize that these resources are the kinds of tools that might enable them to "go it alone" more effectively. To find out more, you can check out Information About Multiple Sclerosis.

Understanding Multiple Sclerosis

Emotions
 
LIVING WITH MS poses an ongoing challenge to the emotional equilibrium of a family. Both the person who has MS and family members experience feelings of loss and grief with each new symptom and each change in functional ability. Each progression in the illness requires the entire family to adjust to the loss and redefine themselves accordingly. "Who am I now that I can no longer do some of those things that helped to define me as me?" "Who are we as a couple now that our partnership is being redefined by MS?" "Who are we as a family now that our roles have changed and our relationships to each other and to the community are changing?"
 

Understanding Multiple Sclerosis

Along with grief comes anxiety over being unable to predict what the future will bring. While all people live with uncertainty, most are not so aware of it on a day-to-day basis. As adults, we tend to take for granted our ability to plan and look forward to events. Families living with MS sometimes feel overwhelmed with "what if's."
 
Anger can also become a part of life with MS. When uncertainty, change, and loss threaten the family's sense of order and control, individual family members may feel increasing resentment - toward the MS, toward one another as gradual shifts occur in their roles and relationships, and even toward themselves for being unable to do the things they want or need to do.
 
The ebb and flow of these emotions can take a toll on even the most secure and stable families. Learning to recognize, communicate, and share these feelings with one another helps family members to cope with them more comfortably.


Challenges to Family Coping
 
FAMILIES EFFORTS TO cope with the intrusion of MS into their lives are challenged not only by the complexities of the disease, but also by the complexities of the families themselves. What is it about families that complicates the coping process? 

Individual Needs and Coping Styles
 
THE FAMILY UNIT is made up of individuals, each with a unique personality and coping style, as well as age-appropriate needs and goals. Each person in the family will see the MS in a slightly different way, and respond to its demands in terms of the way it impacts his or her particular situation. Thus, the MS will mean something different to the husband with MS who can no longer handle his construction job, his wife who needs to take a job outside the home, his young daughter who relies on him to coach the soccer team, and his teenage son who suddenly finds himself with a host of new responsibilities around the house. Therefore, the family's efforts to deal with the disease cannot be seen as a unified, coherent process, but rather as the sum total of individual, sometimes conflicting, coping efforts.
 
For example, a woman might respond to her diagnosis by wanting to read everything available about MS and its treatments, while her husband and children want to read and think about MS as little as possible. Or, a woman might feel the need to discuss her husband's MS with friends, relatives, and even acquaintances, while he desperately wants to keep it a secret. While each of these coping strategies might be perfectly valid, the difficulty arises from the fact that different members of the family may be trying to utilize them simultaneously.

Similarly, a child's need to know and understand what is happening to Dad may conflict with the family's wish for privacy. Not only do young children have trouble keeping secrets, but they are also unable to appreciate the potential impact of this kind of information on their father's employment or place within the community. As another example, the family's need to engage in effective financial planning may fly in the face of their need to deny the possibility of future disability. In other words, the family's response to the MS is not a simple one. At any given point in time, it is a reflection of the feelings, attitudes, needs, and priorities of each of the people involved. To find out more, you can check out Understanding Multiple Sclerosis.