MS and Your Feelings: Handling the Ups and Downs of Multiple Sclerosisby Allison Shadday, Stanley Cohan
Multiple Sclerosis is a devastating, incurable disease that afflicts about one in a thousand North Americans. Striking in the prime of life, it is the most common debilitating neurological disorder of people between the ages of 20 and 40. Eighty percent of patients suffer from cognitive impairments, seventy percent from sexual dysfunction, and fifty percent from depression.
Few people are prepared for the emotional impact of this unpredictable, disabling chronic condition. Faced with a life-long progressive illness, patients typically experience fear, anger, sadness, grief, guilt, low self-esteem and sexual dysfunction. Half of all MS patients suffer from clinical depression. Other invisible symptoms, such as cognitive impairments and severe fatigue, often leave patients feeling misunderstood and alone. The emotional affects of MS can be more crippling than the physical challenges, yet little has been written on this topic.
MS AND YOUR FEELINGS is the first book to specifically address the emotional pain caused by MS. Psychotherapist and MS patient, Allison Shadday, offers readers effective strategies for coping with the psychological trauma of this disease. Shadday shares real-life MS success stories and offers insightful professional advice derived from years of counseling hundreds of chronically ill patients. Her book offers readers hope, inspiration and validation, and teaches them:
·How to come to terms with an MS diagnosis
·How to recognize and overcome negative emotional responses to MS
·Techniques to identify and manage stress triggers that can impact MS symptoms
·Ways to minimize MS-related fatigue
·Strategies for coping with fear, guilt, anger, loss, depression and isolation
·Steps to enhance intimacy and build support networks
·How to deal with cognitive challenges
·Tips for increasing self-esteem
·How to develop a greater sense of emotional security and stability
·Latest information about new treatment options and promising research
In addition, noted neurologist and MS expert Dr. Stanley Cohan, Director of the Pacific Northwest Multiple Sclerosis Center writes about the importance of treating the emotional symptoms of MS and discusses the promising future of MS drug research.
Full of immediate, useful solutions, MS AND YOUR FEELINGS is an invaluable guide for patients, their loved ones and MS health care professionals.
...In her new book, Allison Shadday thoroughly addresses this most difficult of issues with compassion and insight...from coming to terms with the initial diagnosis to learning how to handle depression, fatigue, and cognitive problems as they occur, Shadday offers insight and information... MS and Your Feelings is an easy read and a great addition to any MS library. Readers will find this a helpful reference to consult again and again over time. Inside MS
As someone who has struggled with MS for almost 20 years, I have read many books about it. I believe this is the most comprehensive and helpful book to deal with the many emotions of MS. The exercises are especially useful for the individual, as well as their family." — Marie Schwab, English teacher, MS patient
Finally, a long overdue book on managing the emotional impact of MS! MS and Your Feelings addresses specific psychological challenges and provides in-depth questionnaires and practical strategies to help you understand and ultimately meet those challenges. Written by a woman who lives with MS and who has counseled hundreds of people with the disease, Allison Shadday explores denial and acceptance, guilt and depression, psychological numbing, loneliness, and much more. With personal insights and experiences from men and women living with MS scattered throughout, readers will undoubtedly recognize themselves and their emotional challenges, and consequently, feel validated and less alone.” —Christine Ratliff, Editor, MSFocus, The Multiple Sclerosis Foundation
One of the greatest hurdles in dealing with an unpredictable disease like MS is to learn how to overcome the psychological burden of not knowing what the next day will bring. Allison Shadday helps readers realize whether you have MS or not life is unpredictable so we must all learn to be happy and content with what we have today. MS and Your Feelings helps readers bridge the distance they feel with the outside world and gives the hope of living a fulfilling happy life. — Andrew Larson, M.D. and Ivy Ingram Larson, authors of The Gold Coast Cure and Fitter, Firmer, Faster
In MS and Your Feelings Allison Shadday gives us tools that can change our perception of MS and of ourselves as MS patients. The simple exercises she recommends can empower us to amend the way we respond to the presence of MS in our lives. Allison’s words might ultimately enable us to view MS as an ally in our journey toward self fulfillment rather than as an enemy to be fought every step of the way. Allison has done a great job and a great service to MSers. — Judith Lynn Nichols, Author of Women Living with MS and Women Living Beyond MS
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Read an Excerpt
from Chapter Two: COMING TO TERMS WITH MS
Clearly, a great deal of emotional processing must be done after receiving a diagnosis. Responses are varied and complex. It can take a while to let MS become a reality in your life. Part of absorbing the diagnosis involves a shift in your self-image and this does not happen overnight. Illness humbles us and brings with it many negative associations. We may not see” ourselves as being ill. Those around us may also have a hard time believing the news which can add to our difficulty in adjusting. Often the invisible nature of MS makes the disease extremely difficult to accept. Initially it is important to be patient and gentle with yourself and your loved ones.
Rest assured that whatever your initial response is to the disease, it is likely to be temporary. Eventually you will begin to reshape your identity and establish a new sense of yourself as someone who has MS, but is not consumed by it.
I suggest you to take a moment now, while getting the diagnosis is fresh on your mind, to fill out the following questionnaire. This exercise will help you to reflect upon your feelings about being diagnosed. I also encourage you to have your family members fill-in how they felt when they heard about the diagnosis. Sharing your responses to the questionnaire can be a way to start discussing how you feel about MS coming into your lives. The following chapters will help you through that process.
MS DIAGNOSIS QUESTIONNAIRE:
When you were first diagnosed with MS, how did you respond?
What were some of your concerns or fears after initially being diagnosed?
What questions did you have?
How did you feel when you were first diagnosed?
Have your feelings changed since you first heard the news?
Did you want to talk with others about it?
How did others respond to learning that you had MS?
MS DIAGNOSIS QUESTIONNAIRE FOR LOVED ONES:
When your loved one was first diagnosed with MS, how did you respond?
What were some of your concerns or fears after learning of the diagnosis?
What questions did you have?
How did you feel when your loved one was first diagnosed?
Have your feelings changed since you first heard the news?
Did you want to talk with others about it?
How did others respond to learning that your loved one had MS?
IT IS TIME TO TALK:
If you take the time to complete the exercise above and do it with someone who cares about you, it can be a powerful therapeutic experience. Clients have found that this tool can be a catalyst to begin meaningful discussions that seemed difficult to start without the structure of the exercise. One woman who lived with the disease for almost two years says, I thought I knew how I felt about getting the diagnosis, but once I started writing about it, I was shocked by all the feelings that came out. I had stuffed a lot of my emotions about it down to try and protect my partner. Instead of protecting her, I was pushing her away. When we did the exercise, we really started talking about how the disease was affecting us instead of walking around and ignoring it. For the first time we both felt like we had the disease together and this made us both stronger.”
Getting an MS diagnosis can be a terribly lonely experience, but when we allow ourselves to feel the support of others we grow stronger and our burden is lessened. As the old saying goes, A joy shared is doubled, a sorrow shared is halved.”
However, when doing this exercise, be prepared. Your loved one could express feelings or thoughts that surprise or even hurt you initially. You may also get in touch with some powerful reactions of your own that you were unaware of. I suggest that you read and share your answers completely without interruption before responding to each other. Take some time to absorb what the other is saying. Talking honestly can be tough work, but suffering in silence is not healthy for either party. Learning to openly talk about your disease may significantly shape the way you handle it.
This exercise will be the first of many suggested in this book. You will get the most out of the following chapters if you begin using these tools straight away.
In many cases, preconceived notions can greatly influence your reaction to being diagnosed. You may have known one or two people who had MS and immediately assume that your condition will be the same as theirs. Perhaps you have seen stars on television such as Richard Pryor or Annette Funicello struggling with the disease and you see yourself battling the same symptoms. Knowing the statistics about MS patients can be reassuring.
According to author Dr. Louis Rosners’ book, Multiple Sclerosis,” at least 20 percent of people with MS will have a benign course. This means that the disease will not progress and will have little, if any, impact on the patient’s life. Another 20 to 30 percent will have relapsing-remitting MS which is chhhhharaccterized by occasional relapses, followed by a full or partial recovery. Another 40 percent will develop secondary-progressive MS. This form of the disease, which is indicated by more frequent relapses and fewer complete remissions, usually occurs after a period of five to twenty years of living with relapsing-remitting MS. Primary-progressive MS is a more severe type of disease that is characterized by a steady decline in functioning. About 12 percent of people with MS have this form of the disease. However, it is this more debilitating type of MS that the general public is most aware of because the symptoms are usually visible. As a result, it is this last category that most patients initially project onto themselves. The fact is, only a small percentage of MS patients eventually become severely disabled.
Margaret Blackstone, author of, The First Year of Multiple Sclerosis,” reports that only about 25 percent of those living with MS will ever need a wheelchair. Forty percent will not experience symptoms that are debilitating enough to limit their normal activity. The life expectancy of a person with MS is close to that of the general population.
These numbers do not take into account the medical advances that have been made in recent years. You may be fortunate enough to be part of the new generation of MS patients that can benefit from the previously mentioned disease modifying drugs now available. Because these treatments are still so new, we don’t have numbers to reflect how these breakthroughs might improve long-term outcomes. One can only assume that our odds will be improved.
Of course statistics are one thing and living intimately with the disease is another. Getting the diagnosis may have a profound emotional impact on you regardless of the physical consequences you experience.
ACCEPTANCE IS NOT QUITTING:
No matter what your reaction is to having MS, your ability to eventually gain a healthy perspective on living with the disease begins with acceptance. Without acceptance, a tremendous amount of energy is used to deny the existence of the disease. Despite denial, the illness continues to exist and the positive energy that could be directed toward managing MS gets diluted. Wasted energy is a luxury that few people with MS can afford.
Frequently the notion of acceptance is confused with surrender or giving in, but in fact, acceptance is what allows you to regain a sense of control and mastery over your life and your disease. The definition of acceptance is, to regard as true and to take upon oneself the duties and responsibilities of.” In accepting the diagnosis of MS, you begin to take responsibility for your health. It becomes your duty to learn all you can about the disease and how to manage it. Acceptance gives you the opportunity to begin making the best of what life has to offer you. It is not an excuse to throw in the towel and quit.
Acceptance is a goal to work toward, not a state of grace that comes automatically. The fact that you are reading this book is one sign of acceptance. How will you know when you have truly come to terms with having MS? Dr. Rosner has designed a ten-point checklist that I have adapted to help you recognize when you have arrived at an emotionally healthy acceptance of your disease. This checklist provides some specific targets of acceptance to shoot for:
1. MS is no longer the focus of your life.
2. Sadness, anger and disappointment are occasional emotions, not a way of life.
3. Although you are optimistic, you accept that you may have either a mild or more progressive course in the future.
4. You continue to make plans for the future based on your current level of ability, with the understanding that they may need to be altered.
5. In the event of physical impairment, you are able to readjust your goals in work, play and relationships to match your ability.
6. You are no longer fearful of the future.
7. You are willing to accept help from others, while finding your own way to reciprocate.
8. Regardless of physical limitations, you maintain a positive self-image.
9. You follow good health practices and avoid tempting fate with aggravating factors.
10. You view MS as an added burden in your life, not the reason for all your problems.
Achieving all ten goals is a tall order, but the skills you learn from reading this book will get you started on your path toward acceptance.
Meet the Author
ALLISON SHADDAY, LCSW, is a medical clinical social worker with 14 years of experience counseling chronically ill patients and their families. She has presented at both regional and national MS conferences. She is a patient advocate for Biogen pharmaceutical company, and in this role gives presentations to neurologists, patients and family members on the emotional impact of chronic disease. She was diagnosed with multiple sclerosis in 1996. Allison Shadday lives in Friday Harbor, Washington.
STANLEY COHAN,MD, noted neurologist and MS expert, Director of the Pacific Northwest Multiple Sclerosis Center in Portland Oregon, is the author of the Foreword and in the last chapter discusses the promising future of MS drug research. He lives in Portland, Oregon.
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