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Extracts from Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic Illness, by Paul J. Donoghue, PhD & Mary E. Siegel, PhD
"Where need is most pronounced, feelings are most intense. In the loneliness of pain and sickness, we need the comfort of care, sympathy, and understanding. We want this comfort from those who know us best -- our spouses, family, and friends. When we are met instead with impatience and distrust, we are shattered. We withdraw like wounded animals. Or we attack those who are hurting us.
Spouses and family members of the sick are often overwhelmed by their own needs and feelings. Their needs for intimacy, companionship, and happiness are threatened by complaints of sickness. Their feelings of fear, disappointment, confusion, hurt, and anger are complicated by feelings of guilt for being well and for having needs that the loved one is often not able to meet. "
Contents
Introduction to the book and these extracts
Coping with ICI in the Family
Doubt and distrust
Role changes
Supportive Spouses
Listening
Publication details and how to get the book.
The invisible chronic illnesses (ICIs) include diseases like irritable bowel syndrome, cystitis, multiple sclerosis and arthritis as well as fibromyalgia and chronic fatigue syndrome. What they all have in common is not only that they are invisible, but they are also mysterious: difficult to diagnose and treat, unpredictable, and very hard for us to explain or for those around us to understand.
Most of us have our illness for life and, in the absence of a cure, must develop coping mechanisms to prevent them from robbing us of more than just our physical health. In the introduction, the authors say they hope Sick and Tired of Feeling Sick and Tired will "comfort you and inspire you to live with your illness in a way that gives you dignity, confidence and hope".
Rather than focussing on the medical specifics of each disease, the book addresses a range of familiar problems for people with ICI, including dealing with the medical profession, and employment issues. The extracts I have chosen are about relationship issues and are from the following two chapters:
In the actual book the authors go into detail and provide more examples. In later chapters, they offer practical advice on techniques for improving family relationships: for example, "Saying what you feel" and "Hearing what is said". If you recognise the issues raised in these extracts, then there is much more in this book for you.
Almost every person with ICI needs the support and understanding of her family -- spouses, parents, siblings, children. Nowhere in her life is good communication needed more. It is here that her needs are most pronounced. Many of her needs and those of her family members are so profound and personal that the feelings they generate can be of shattering intensity. Unfortunately, invisible chronic illness provokes tremendous family tension and so strains relationships that among sufferers divorce is common. Where effective communication is so desperately needed, it is frequently absent.
Certainly, no loving family member intentionally refuses to communicate. Yet most of us, whether ill or not, are frequently frustrated by a spouse, a child, or a parent whom we perceive as not being open or as not listening. Family members who want to be a source of comfort to the one who is ill unintentionally neglect listening for the seemingly easier offerings of "comforting" words and such advice as "Don't worry," "Try to think positively," "Things could be worse."
The person with ICI is often overwhelmed with feelings. She needs to be able to identify these feelings and to share them with the people in her life who matter most. Her family members have a similar need. Unfortunately, most individuals with ICI and most people in general don't know how to share their feelings directly. Instead they act out their feelings through some form of attack or withdrawal. The sad result is that they seldom truly release their feelings and even less frequently experience understanding.
Appearances belie ICI. Despite looking "free," the patient may be suffering greatly. Someone needing her to play, to make love, to work, to contribute has to trust that, despite appearances, she is not able. Such trust is difficult when one's perceptions have to be discounted; it is even more difficult when one's needs have to be denied. Disappointment, hurt, and anger strain the quality of trust. Realizing that she is going to be misunderstood or that behaviors might be expected that she cannot perform, the patient may tend to exaggerate her symptoms around those she loves. For example, if she is suffering fatigue, she might slump her shoulders or walk very slowly or talk in a tired, strained way. For these efforts she might be rewarded with lowered expectations, but more often her behaviors will be met with impatience and even distrust: "You don't have to act like you're dying!" or "Come on, let's speed it up." The patient again finds herself caught between contradictory wishes: wanting clear, convincing outward signs of her illness, yet praying desperately that the disease will not get worse. - - - -
Many patients doubt themselves and their disease. At times they do ignore signals from their bodies, push themselves, test their endurance. "Maybe if I just forget about it and walk normally .... " At other times, they feel that they will go mad attending to another symptom. Their own self-doubt and confusion are reinforced by those around them. There is always a sense of being distrusted: "Maybe if you tried harder." "Maybe if you rested more." "What if you see a psychologist--or a different one." "Well, what did the doctor say exactly?" In self-doubt and confusion, the patient is terribly vulnerable to the suspicions and misperceptions of those who should know her best.
The self-doubt and subsequent constant self-questioning are at the heart of the patient's torment. When Kim, who suffers from chronic fatigue, feels a wave of intense fatigue, the questioning begins: "Should I give up my job and find a more sedentary one? Did I bring this state on by not stopping chores and errands soon enough? Am I like this because I ate too many foods with sugar or because I stayed up too late? Am I responsible? Should I seek relief? Am I getting dependent on medication? Will the doctor get fed up seeing me again saying I'm tired?"
In this vulnerable state the patient becomes overly sensitive. A friend's simple question, "How are you?" is not simple for the sufferer of invisible chronic illness, who may be preoccupied with her body and with pain. To respond "fine" sets off feelings of resentment and loneliness; yet to talk again of pain or fatigue triggers fear of the other's impatience or rejection. A casual remark by a spouse that the kitchen cabinets are dirty or that there are spots on the rug can unleash a torrent of self-defense that is full of blame and self-pity. It is not easy to have ICI and it is not easy to relate intimately with the one who does.
Some of the coping that is required in families with a sick member involves changing roles. We tend to identify with the roles we play, so changing our role can be threatening to our sense of self. If you have been the energetic one who got everything ready for a family vacation, you can feel an awful sense of worthlessness lying on the living room couch with spouse and children bustling around you. If you were the responsible parent--present on school nights, active in parent-teacher committees, on call for school volunteer programs--you can feel anxiety and guilt at not being the all-American parent. If you were the dynamic dad before MS, being the crippled dad can strip away all sense of authority.
Often the role change involves shifting from independence to dependence. Jeanne is a bright young woman, the youngest daughter of loving parents. She has always shown initiative and ambition. She earned her own money all through high school with an assortment of jobs from waitress in a diner to salesgirl at Macy's. After high school, Jeanne attended Katherine Gibbs secretarial school and graduated to a high-paying job. At twenty-two, she had her own small apartment and a car. Three years later fibromyalgia began to undermine her independence. Her mother spent hours with Jeanne, driving her to doctors, helping her clean her apartment, cooking some of her meals. Finally, Jeanne and her parents concluded that it would be easier on all of the family if she moved back into her parents' home. For Jeanne, this move was traumatic.
I couldn't get used to it. I know that I needed help, but I had never realized how much I needed privacy and the sense of being able to do things when and how I wanted. Now I can't skip a meal or stay out late, let alone overnight. I can't even leave my bed unmade without upsetting my mother. They worry too much. They know every move I make. It's driving me nuts. I can't have friends over for the evening. I just pray to God I can get strong enough to move out soon. We've been close as a family, but we're gonna be killing each other if this keeps up.
It is not difficult to imagine the tensions experienced by Jeanne's parents. They are having to revert to caretaker roles that they had performed well but had felt relieved to abandon. The patience they once possessed is strained. The quiet routine that they have been developing has been disturbed. Their other two daughters are making demands for attention and show signs of jealousy.
Whenever one member of a family changes his or her role it puts pressure on others in the family to change. Before chronic fatigue set in, Rhonda had been the energetic center of her family. She had reveled in the role of super-mom, responsible daughter and daughter-in-law, and attractive "proper" wife to her bank vice-president husband. After some soul-searching family conferences, Rhonda was able to report.
It's different now for all of us. I think we've all had to change. Bob has been sensational. I think I used to shield him from most family responsibility while he focused on work. I even remembered his parents' birthdays. I bought all the gifts for everyone--even his Christmas gift for me. Can you believe that? I was a family travel agent, family bookkeeper, social secretary, cook, chauffeur. You name it. The kids did next to nothing at home and Bob did nothing. Now, Sara and Jeff (eleven and thirteen years old) frequently prepare dinner. They do their laundry. Bob checks on them in the morning and sometimes drives them to school. He attended the last parent-teacher conferences and he called his mother last month for her birthday. I'm reading more and have become interested in some church activities that don't demand much effort or my being out at night. We're better as a family now. It hasn't been easy to change, but necessary.
Many of us are resistant to change. We become entrenched in our roles and daily habits. If we are moved to change, there are family members who will resent change and try to dissuade us. "What's wrong with the way you were? .... But you've always done that." "I'll bet this is because of that new support group you joined." Change threatens what people expect of us and also what will be expected of them. "What will happen to the kids? .... What will my friends think? .... What about the company dinner? .... What about my dinner?" It takes courage to admit that we must let go of what we have known. It can take even more courage to resist the pressures of those we love and whom we hate to disappoint.
A recent study reported in the New York Times confirmed our overwhelming clinical experience. "How spouses treat their partner suffering a chronic illness.. . has a more profound impact than might be expected on how well sick partners mentally adjust to the suffering." The researchers found that mild grumbling or even relatively benign comments had quite damaging results. If a husband was critical of his sick wife, the study found that she developed very negative attitudes toward her illness and spent much time in wishful thinking, hoping that the illness would go away. But when the wife felt that her husband was supportive, she was more likely to adopt attitudes that made the suffering more tolerable. In fact, many of these women developed very positive viewpoints that the illness had become for them a source of growth.
In our experiences, no one is more important to the married person with ICI than her spouse. He is a mirror into which she looks to see herself. Made vulnerable by her illness, she fears that she will see herself as ugly, undesirable, unlovable. Lovely women looking toward their husbands sometimes see themselves as in a funhouse mirror: gross and distorted. But those with husbands who listen, who share themselves openly, and who communicate can begin to see themselves as needed, admired, understood, and loved. They can see themselves as someone who triumphs over adversity instead of one who gives into an imaginary illness. In Shakespeare's words,
Love is not love which alters
When it alteration finds.
Robin is a petite, olive-skinned brunette. She has always been considered "the beauty" in her family. Since she has been taking the anti-inflammatory drug prednisone, her face has become puffy and round and her body is somewhat bloated. She described the difficulty of coping with the changes in her appearance and the need she feels for her husband's affirmation.
I hate looking in a mirror, yet I feel compulsive about looking at myself. It's almost like I think I'll get my face back if I keep looking at it. Over and over and over I keep looking to see if the puffiness has disappeared. Thank God for Jim. He doesn't seem to mind. Yet, I know he loves me "pixie faced," as he used to say. He calls me "beautiful" and asks, "How's my beauty?" It probably sounds silly and vain, but I need to hear it.
Jennifer is very thin but her abdomen is frequently distended by her irritable bowel syndrome. There are many days when most of her clothes won't fit at all. But, as she told us,
Hank is incredible. If I'm still in bed when he leaves for work, he'll leave me notes telling me that he loves me, giving me the weather report, and hoping that I have a good day. To him I seem attractive, even if I feel gross.
Frequently, it is very hard for the chronically ill person to see herself as lovely and loved. It can be frustrating for a husband to find his wife self-doubting and doubting of his love. He needs to understand his wife's difficulty in really trusting his affection and desire for her. He needs to be aware of how hard it can be for her to trust when she is struggling with feelings of fear, vulnerability, and inadequacy. And she needs to appreciate how hurt he can be in being doubted.
No matter how loving and supportive a spouse might be, he has his own feelings and needs, which are deeply affected by his partner's illness. He needs her to trust in him and accept his love and admiration. He needs her, sometimes, not to focus on or talk about her illness. He needs her attention and care. He needs her to be hopeful and optimistic. He needs her to be a companion on walks, going out to dinner, making love, skiing or playing tennis, in any hobby they have enjoyed in the past together. He might need her to bring in an income. When these needs cannot be met, he may feel disappointed, hurt, frustrated, and then guilty for having these feelings. He has to be free to admit these needs and feelings, even at the risk of hurting the one he loves most.
When the feelings are denied, not only do they fester into judgments about his spouse or about himself, but the denial also promotes distrust. Once these needs and feelings are admitted and accepted as natural and understandable, then the couple can be creative in developing new ways of being together, new ways of meeting their individual needs.
Other family members are swamped with feelings when someone they love suffers from ICI. Their needs, frequently not identified or admitted, are that their daughter or mother be well or, if she is ill, that the disease be diagnosed, treated, and cured. They need also for their lives not to be disturbed by fear for the health of a loved one, by having to care for an invalid, or by suffering the loss of an active companion. They struggle with their suspicions that the ICI patient may not be genuinely sick, and they dread the possibility that the patient is terribly ill. These needs and struggles trigger feelings. For the family member, these feelings interfere with effective listening. As it is with the patient, it is very hard for loved ones to listen to the patient when struggling with their own mixed feelings.
Friends and acquaintances fear invading privacy or are uncomfortable with descriptions of symptoms or expressions of suffering and fear. They frequently try to keep the conversation "light" or to avoid any topic that may segue into a discussion of the patient's illness. Unaware, perhaps, of their own feelings of disgust, embarrassment, suspicion, distrust, or fear for the patient's well-being, friends may avoid the topic of illness completely. The effect of the avoidance is to deprive the patient of an opportunity to talk and to be heard. It also deprives the patient of the opportunity to listen and come to understand the friend more deeply. Admittedly, it is not easy to share feelings of distrust, for example, nor are they easy to hear. - - - -
Ironically, listening is impeded at times by love and care. When a patient feels discouraged, frightened, or hopeless, it is exceedingly challenging for someone who loves the patient to hear the feelings without wanting to "fix" the problem. The tendency of the family member, partner, or friend is to offer advice and try to solve the problem. Where invisible chronic illnesses are concerned, few if any of the inherent "problems" can be solved. No one can take pain or fatigue away, no one can cure a chronic illness, no one can force a diagnosis to be made, and no one can produce the perfect remedy. When a patient is suffering from pain, discouraged with fatigue, angry at a doctor's insensitivity, frustrated with an insurance company that refuses to pay, or scared of future disability, it is tempting for the person to offer pain relievers, suggest a "new" treatment plan, encourage the patient to take the insurance company to court, or disparage the doctor. To listen deeply to the patient's suffering, discouragement, anger, frustration, and fear, the listener must resist the temptation to solve the problem. Problem-solving most often comes from feelings of helplessness within the listener. It is daunting to face the reality that we cannot take away pain, cure a disease, and protect the one we love.
Facing the myriad difficulties of ICI with someone we love is an awesome responsibility. We are tempted when we hear that someone suffers to take the suffering away. In most instances of life we cannot do so. We can, however, be a profound source of comfort to another person when we listen. The trials of ICI become easier to accept when we trust that by honestly and deeply listening we can provide comfort.
Sick and Tired of Feeling Sick and Tired: Living With Invisible Chronic
Illness
Authors: Paul J. Donoghue, PhD & Mary E. Siegel, PhD
Publisher: W.W. Norton & Company
500 Fifth Avenue New York, NY 10110
ISBN#: 0-393-03408-0
All material from the book © Paul J. Donoghue and Mary E. Siegel. These extracts appear by kind permission of the authors.
Available in Australia from:
John Wiley & Sons Australia, Ltd.
33 Park Road, Milton, Queensland 4064
Tel (61) 7 3859 9755
Fax (61) 7 3859 9715
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