coping

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Indiana University, Purdue University, Indianapolis *

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Oct 30, 2023

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Being diagnosed with a chronic illness such as diabetes, cancer or arthritis can come as a blow. It's normal to experience a range of emotions in the wake of such a diagnosis. However, you can learn to manage these feelings to live a fulfilling life. Emotional roller coaster Distress is common following a chronic disease diagnosis . Research indicates that people who are experiencing a number of stressful life events before diagnosis, and those with a history of depression, may be at particular risk of psychological distress when they learn they have a chronic illness. 1 However, even people with relatively few stresses in life can be shaken by a chronic-disease diagnosis. Digesting news of your disease can bring a flood of emotions. A diagnosis of diabetes, for example, is often associated with feelings of guilt and shame. 2 Grief is another common reaction to chronic illness. You may experience various stages of grief including denial, bargaining, anger and sadness. You may feel you're on a roller coaster of emotion — accepting one day, and angry the next. It may help to remind yourself that these feelings are normal, and will likely ease with time. Coping strategies Some days you may be tempted to pretend you never received your diagnosis. However, facing your diagnosis head on is the best way to cope. This was evident in a study of women with breast cancer, which found women who felt resigned to their fate were psychologically less well adjusted three years later, compared to women who actively confronted their diagnosis. 3 Another study, also of women with breast cancer, found those who sought social support and used active coping strategies — such as developing a plan of action — reported more inner peace and satisfaction with life two years later, compared to women who tended to deny or avoid their diagnosis. 4 How can you actively face your illness? A good place to start is by writing down all of your questions and taking them to your physician to discuss. Ask your doctor what specific steps you can take to optimize your health. Accurate knowledge can help you feel empowered. Also try to manage the elements in your life that are within your control. You may not be able to control certain aspects of your disease, but you can choose to eat healthy meals, take medications as prescribed and spend less time with people who aren't supportive. Finding support

Minimize stress by letting go of unnecessary obligations. You may be able to take time off from volunteer commitments, for instance, or ask for more help from family and friends. Build a strong support network you can rely on, and communicate with them about how they can best help you manage your disease. Illness can be stressful for an entire family. It's not unusual for couples to experience strain on their relationship. Try to see things from the other's perspective and keep the lines of communication open. If you have children, plan for some alone time with your partner. Also encourage your partner to make time to care for himself or herself, especially if he or she is your primary caregiver. Facing a life-threatening diagnosis Being diagnosed with a life-threatening or terminal disease is likely to trigger feelings of fear and grief. More than ever, it is important to surround yourself with positive and supportive people. Try to find small things that you can enjoy every day, and set realistic short-term goals for yourself. Even small goals such as a visit to a park or museum, or a phone call with a close friend, can help you make the most of each day. Seeking help The 5 Coping Skills Every Chronic Pain Patient Needs Pain management is like a 3-legged stool—interventions, medications, and psychological education and counseling. Without all 3 legs, the stool will fall. By Ted Jones, PhD Page 1 of 4 41 When I first began work in the field of pain psychology, I wanted to be as helpful as I could be to my patients and to be seen as fully prepared and competent by my referral sources. However, as I began to read books and attend conferences “to get up to speed,” I was overwhelmed by the variety of services and offerings that experienced practitioners offered. Along with ever-present traditional cognitive-behavioral psychotherapy, I also learned about a variety of other interventions: progressive muscle relaxation; guided imagery; hypnosis; technology-assisted treatments such as virtual reality; activity pacing; sleep hygiene; patient education; psychodynamic psychotherapy; interpersonal therapy; assertiveness training; family therapy; desensitization. … The list went on and on. When I traveled to pain conferences to learn new skills, I had trouble deciding which sessions to attend. I had no plan or schema to organize my training or my psychology services. I also did not have unlimited resources to attend every conference and learn every possible pain intervention technique.

After several years of clinical practice (it’s been 16 years now), I began to construct a schema to help organize where to start—where I should start in my continuing education and where I should start with my patients when they presented for therapy. I have presented this schema at professional meetings a few times and others tell me they have found it helpful. The following is a summary of my experience. The Big Picture In general, one method that helps me organize my thinking about pain treatment is Dr. Herbert Benson’s oft-used analogy of a 3-legged stool. , Dr. Benson, a Harvard cardiologist who has been a pioneer in the field of mind-body interventions, has proposed that health care treatment for any chronic condition can be conceptualized as a 3-legged stool. The first leg of the stool is made up of interventional treatments, or “passive patient” approaches. These include surgeries, injections, manipulations, and other similar treatments. For these, all the patient has to do basically is show up and be still. I refer to it as “the auto repair school of medicine.” The second leg of the stool is made up of pharmaceutical approaches. These treatments call for action on the part of the prescriber and the patient. The prescriber writes a prescription for some sort of medication and tells the patient how to take it. The patient then is supposed to take (or apply) the medication as prescribed. It’s a joint endeavor of the provider and the patient. Many pain practices start and end with these 2 general approaches, and offer nothing else. However, just as a stool would fall over with only 2 legs, pain treatment is truly successful only when the third leg of the stool is offered. The third leg of the stool is made up of “active patient” approaches—skills and changes that patients make to help them cope with their condition. In the treatment of heart disease and diabetes, these are often referred to as “lifestyle changes,” and providers know that they are essential to bring a chronic condition under control. It is a similar situation in treating chronic pain disorders. While interventional and pharmaceutical interventions are important, the third leg of the stool is critical to successfully coping with pain. This third leg of the stool generally is where psychologists play a role. While a few psychological interventions are not in this domain (hypnosis in and of itself is an interventional treatment until the practitioner begins to teach self-hypnosis techniques), most psychological treatments fall into this third leg of the stool: teaching skills to patients for their ongoing practice and use. This 3-legged stool analogy has helped me organize my treatments within the context of overall treatment for chronic pain. Once I had placed my work within the overall treatment plan for pain patients, I still needed to determine the most important lifestyle habits to teach patients. Rather than determine what the most important skills were, I found a way to organize all the possible helpful treatments into a schema that made sense to me and which then could direct my treatment planning. Thus, what I developed was a conceptualization of the 5 basic or general skills that every patient with chronic

pain should work to master to have the most success in dealing with their pain condition: understanding, accepting, calming, balancing, and coping. The First Skill: Understanding Today, when a patient receives a medical diagnosis, one of the first things they do is go to the Internet and search for the diagnosis. (People used to go the library, but now we use search engines.) They are likely to search and read about 2 things: what is this diagnosis/condition and how is it treated. To better understand their conditions, people also seek out advice from others they trust, such as friends and family, and they ask the same 2 questions: What is this condition and how is it treated? This also leads to prognosis questions: Will I ever get better? Can this be cured? Patients with pain conditions are no different, and by the time they seek treatment, they likely have already done some Internet searches and talked to family or friends about these issues. Sometimes they have gotten correct information and sometimes they have not. Sometimes patients have appropriate knowledge and expectations about their pain condition and sometimes they do not. So, often the first order of business is to educate the patient about his or her condition and offer a plan of care he or she will accept. Issues that can come up in this skill area are reflected in comments such as “My body is damaged very badly and I need strong pain medication,” “I do not want any opioid medication because it is highly addicting,” “I just want someone to do surgery on me and fix this problem,” “I don’t want an injection—I hate needles and I hear the relief doesn’t last any way,” and “I have already had that (treatment) and it didn’t work” when they really didn’t have the same treatment. Questions and comments of this type often indicate that the patient needs some education to better understand some aspect of their condition or their treatment. As a psychologist, I often receive comments similar to “I don’t need a psychologist; my pain is real and it is NOT in my head.” One major educational point I need to make with many patients is how psychology services fit into the treatment of “real pain.” I have had much success going over the concept of pain gates. 3 Having patients understand the pain gates concept (an overview is usually sufficient) helps them see the value of psychological interventions in treating chronic pain. This validates why it will be helpful to address such issues as depression, anxiety, and sleep hygiene. It shows that a holistic approach to their pain may be of value and it likely is a new approach that they have not been offered before. Psychologists and other providers often also address such issues as fear avoidance of pain, how in chronic pain “hurt does not mean harm,” and how a downward cycle of dysfunction and immobilization often is overlaid on chronic pain conditions. The sensation of pain usually means that there is bodily damage. A natural reaction to pain is to stop moving, a tactic that helps decrease the pain temporarily. But this stopping of movement can lead to more muscle contraction, altered body mechanics, increased pain, and more inactivity. This can become a downward spiral of inactivity and increased pain. Patients need to understand that with chronic pain “hurt does not mean harm.” The pain sensation is basically a false or over-amplified sensation and does not reflect new or more tissue damage. One important step for pain patients

then is to realize that it is okay to move and to feel some pain. By slowly increasing movement, patients realize that the pain is indeed bearable and need not be avoided as much as they may have been doing. This can start a positive cycle upward of more activity and increased tolerance of pain. Addressing this and other issues surrounding a patient’s diagnosis and treatment plan are, for me, the first steps in creating a working treatment relationship and moving forward with the patient to address his or her pain. The Second Skill: Accepting How the patient thinks about his or her pain is critical to successful outcomes. “Catastrophizing”—the behavior of patients telling themselves that their pain is the worst imaginable, that relief is impossible, and that this is the worst situation of their lives—has been shown to be an important predictor of negative pain treatment outcomes. 4 An important skill for the patient is be able to accept his or her situation and decrease their emotional struggle with the situation. This can be a tricky skill to discuss because it is not helpful for the patient to just give up and not put in any effort to deal with making his or her life better. What “acceptance” means is a worthy of discussion with every patient. Acceptance and having appropriate attitudes and expectations about chronic pain are central to cognitive-behavioral therapy (CBT), which is the most commonly used psychological therapy for pain patients and has been shown to be effective in treating chronic pain conditions. 5 Acceptance and Commitment Therapy (ACT) also has been shown to be effective for chronic pain conditions. 6 These treatments reflect the overall patient skill of what I have termed accepting. Accepting is a major issue for all pain patients and will be a part of any treatment of chronic pain, whether one is a psychologist or not, and whether one is doing CBT or not. There are many counseling and motivational techniques that can help in this area, in addition to CBT and ACT. On a simple level, I tell many patients that the basic issue is changing from thinking “woe is me” or “why me” to “what now.” When a patient begins to focus on what he or she can still do and what role in life he or she will have from now on, then this reflects increased acceptance. One basic approach to foster this type of thinking is gratitude. By helping the patient focus on the skills and resources he or she still has, despite the pain, this can help refocus them from the loss to moving forward. While the patient’s “glass” may not be even half full, there is usually some amount of water left in the glass, and focusing on what is left and where to get new sources of water is a key skill for pain patients. Avoiding “shoulds” is important (and is central to CBT). Many pain patients, and most of us as human beings, think with “shoulds.” “I should be able to help my family more,” “I should be able to work a full-time job,” “I shouldn’t have this much pain because I am so young,” and “ I should not let the pain get to me like it does” are common statements that pain providers hear routinely. Working with the patient to help them have appropriate and realistic expectations is important to any pain treatment. A patient’s level of acceptance will vary from day or day or even minute-to-minute, but it is important for a pain clinician to know where a patient is overall with respect to acceptance. The Third Skill: Calming

Pain is meant to stimulate the body into action and to avoid danger. This is the well-known “fight or flight” response. The natural reaction of patients with pain is to be in a state of physiological arousal. The problem is that, because the pain is ongoing, the body can be damaged by this ongoing stress. Therefore, an essential skill for any pain patient is to learn how to calm the body down. I usually use the word “calming” rather than “relaxation” because the word “relaxation” has so many different meanings and uses in our culture that it can get hard to determine exactly what we are talking about. There are a wide array of relaxation techniques that have been used in patients with chronic pain conditions: progressive muscle relaxation, mindfulness, guided imagery, yoga, tai chi, qi gong, and many more. In the past, I have found it difficult to know where to start in this area. In our practice, my colleagues and I differentiate 2 aspects of calming. We first talk about calming down the body’s stress reaction—decreasing stress. This is taught most easily by teaching the patient diaphragmatic breathing. Inhaling with the diaphragm rather than the chest and shoulders (ie, shoulder breathing) can be taught quickly and easily. To demonstrate the impact on the body, I have patients first count their breaths for a 30-second period and write down the number. Then we talk about diaphragmatic breathing and have them put their hand on their abdomen and feel what it is like to breath with the diaphragm rather than the chest. After only a few minutes of discussing this, I ask the patients to again count their breaths, and this time breathe with the diaphragm to the extent they can. Almost invariably the number of breaths has decreased, usually by 20% to 50%. This gives immediate feedback that the body has changed with this type of breathing and how this likely also reflects a decrease in the fight-flight response. After teaching the importance of decreasing stress, we go on to discuss triggering the body’s calming (or relaxation) response. We talk about the difference between decreasing stress (decreasing adrenaline) versus triggering the body’s calming response (stimulating endorphins). This sets the stage for further education about relaxation techniques and how all relaxation techniques trigger this endorphin response. In some groups, we teach a specific relaxation technique (body scan or modified tai chi); in others we ask patients to explore and chose their own relaxation technique—one that best fits their personal philosophy. We believe that there is not one “right” or “best” relaxation technique, but it is an important skill and all pain patients should be familiar with some sort of calming technique to use as needed, if not regularly The Fourth Skill: Balancing This skill is a collection of various techniques and skills that revolve around creating a balanced and sustainable lifestyle. Patients with pain who describe themselves as being successful in managing their pain all report that they have developed a pattern of living that works for them, but they also report being adaptable to episodes of pain. One specific skill within this category is “activity pacing.” This involves learning not to overdo activities. Patients who are coping well describe how they have learned to do a little bit at a time and not overdo it, while also staying fairly busy. In the pain groups that we lead at our practice, we remind patients of the parable of “The Tortoise and the Hare.” Sometimes we give out turtle pictures or turtle magnets for the refrigerator as reminders to take it slow and steady. This also involves breaking large tasks into smaller ones that can be performed one at a time. Maintaining

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