Positive Self Image - Positive Self Talk
Welcome to the Positive Self. We have gathered together some really good articles for you to read and suggested some further links you may like to explore too. No one understands or knows more than a fellow PH patient how your confidence or body image may suffer and this inspiring informative article covers all the bases to help you stay strong and build on you to ensure a better future for yourself with PH. The patient who wrote this understands what happens to your "Whole Self" and how important it is to take care of all your needs medicinal, physical & emotional.
Maintaining a Positive Self Image
Pulmonary hypertension is a “whole life” condition that can influence everything, from how long it takes you to shower in the morning to your social life. Changes to your body, both real and perceived, can be difficult to adjust to, practically, intellectually and emotionally. In a society that celebrates youth, fitness and health, it can be challenging for people living with a chronic disease like PH to figure out how they fit in.
PH and Self-Image Our self-image is made up of all the ideas we have about ourselves, including how we look, how intelligent we are, how connected we feel to those around us, and how hopeful we feel about the future. Being diagnosed with PH can affect every aspect of an individual’s self-image. Many patients describe feeling isolated, either because they can’t get out much or because strangers, friends and family don’t understand their disease. One young woman described how being house-bound has limited her social circle with far-reaching effects: “I used to know lots of people my age at church but now no one is around. They are all either married, have kids, or moved away. Their lives are full of adventure but mine stays here.”
Others find it difficult to maintain a positive self-image with so many of their old “feel good” activities and plans for the future suddenly stripped away. Tiffany said, “Everything I do, my efforts and ability are limited. Cooking, cleaning, working, shopping and decorating my home are all things I love and need to do to enjoy my life. I cannot do these, or I’m limited in how I can do them.” Some of the activities that PH patients have to give up are the very things they did to maintain a healthy self-image before diagnosis, such as running, dancing or staying up late chatting with friends and family. Cut off from self-affirming activities, it can be difficult to re-establish a positive sense of self after diagnosis.
PH and Body-Image: Many PH patients also struggle with one central aspect of self-image: body-image. Physical symptoms of PH and associated conditions, including chronic breathlessness, low energy, weight fluctuation, fluid retention, skin rashes, facial flushing and sweats, can make patients feel like they’re “starting over” in a body that feels totally foreign. Teresa told us, “It’s like a body transplant! You’re the same person inside, in terms of personality, interests, and hobbies. But you’re presented with a body that doesn’t do those things anymore.”
Some patients on supplementary oxygen and intravenous medication find that the discomfort and conspicuous nature of their medical devices can take a toll on their self-confidence. One woman with a Flolan pump confided, “People stare at me and my self-esteem has been lowered. I cry all the time.” Others report feeling self-conscious even in front of their spouses, particularly in the bedroom. A woman in her late 20s described the “horror” of having to go on a date for the first time with an oxygen tank in tow.
Loss of Perceived Identities: Between all the symptoms, medical equipment and life changes, people diagnosed with PH often find themselves experiencing what one support group leader called “the loss of who they once were.” A 42-year-old former cyclist told us that he didn’t know who he was if he wasn’t an athlete. A 65-year-old mother of three told us that after she was diagnosed she thought she’d “never feel like a woman again.” After being told that pregnancy can be life-threatening for women with PH, one young woman was surprised to find herself grieving the loss of a “future mother” identity she didn’t realize she was holding onto. Loss of perceived identities is just one more way PH can alter your self-image.
Yet it’s important to keep in mind that self-image isn’t static. Over time, people with the intention of changing the way they think about themselves are capable of doing just that. According to Dr. John Wynn, medical director in the Department of Psycho-oncology at Swedish Cancer Institute of Swedish Medical Centre, “A healthy body-image is a sense of one’s physical self that feels easy and acceptable. What it comes down to is how do you think of yourself and do you accept who you are?” For many living with PH, the answers to these questions change from one day to the next, and the path to a more positive self-image is ongoing.
Adapting and Moving Forward: While everyone deals with changes to their self-worth and body-image differently, there are strategies that have helped others with PH reflect and improve upon their self-image over time. Here are a few approaches to get you started. Some also find it helpful to seek out professional counselling to work through some of these issues. Talk to your healthcare team about finding a therapist in your area.
Demystify Your Thinking: A negative self-image can feel the most isolating and overwhelming when you can’t put your finger on what you’re feeling and why. Without an awareness of the situations and circumstances that trigger negative thoughts, it’s easy to believe that you’re the only one who feels the way you do. By developing a critical awareness of the expectations you feel, however, it’s easier to recognize that your negative thoughts are just that — thoughts — and not direct reflections of reality.
Think about the expectations you encounter as you move through your day. For example, what expectations do you feel as a result of television, magazines and movies? What images do you see of people with chronic illness in the media, and how do these make you feel? What expectations do you feel because of your family or background? Many people grow up in families or cultures where illness and disability are stigmatized. Sometimes without realizing it, these individuals carry around the unrealistic expectation that they should feel and look healthy, energetic and upbeat at all times, even when they’re sick.
One way to develop critical awareness of your expectations is to make a list of all the elements that make up your self-image (the picture you have in your mind of your personality, your body, your ability to connect with others, etc.). How has your thinking in each of these areas changed since you were diagnosed? When do you feel the most vulnerable? When do you feel the most confident? Look for patterns. One PH patient, Lisa, found that she felt the worst about herself when she thought she was letting her family down because of her illness, like when they dropped her daughter off at college and she couldn’t help move boxes into the dorm. This simple act of recognition helped her see that she was unfairly clinging to expectations that were no longer attainable. It also helped her work up the courage to talk to her husband and daughter about how she felt in these situations.
Further suggested links for this topic can be sourced phassocciation.org
“Ten years ago I was hiking, raising a son and working full-time. I held myself to a high standard, but when PH hit hard and heavy I couldn’t meet that standard any longer. I speak from experience when I tell you that when your body goes to hell in a hand basket, it can easily take the rest of you with it.” Teresa Asselin - Hayes PH Patient
Stay in the moment Your self-image, like life with PH, will have ups and downs. Your body, your health status, your outlook: none of these will stay the same forever. It can be helpful to think about every day as a new beginning, and appreciate each moment for what it is. According to Dr. Tiffany Stewart of the Body Image Project, “The more we hold on to what should be, the less we can see what is and what can be. Opening up to this possibility is a shift in perspective and the essence of acceptance…acceptance of constant change. It takes realizing that the journey is about the journey, and not about certain preconceived expectations and outcomes. When we are able to cultivate this vision for ourselves, we unlock our own ability to let go of judgment and find a genuine appreciation, not just of the body, but of the whole person.”
By talking to her family, Lisa realized that when she couldn’t move boxes, mow the lawn, or cook a meal, she felt like a bad mother and wife. She was experiencing the “loss, of who she once was,” a mother who showed her love for her family through actions. By identifying the root of the problem, she was able to start expressing her love in ways that she was capable of.
She started spending lots of time with her husband and daughter when she was feeling well, folding laundry and doing other sedentary chores, and being vocal about how much she appreciated their help. Demystifying her thinking helped Lisa distinguish reality (she couldn’t move boxes) from her perception of reality (she was a bad mother). This helped her begin to accept her limitations without putting herself down.
Accept What You Can’t Change Today: While research has come a long way in the past two decades, PH is still a life-altering disease. Allow yourself to grieve for the dreams and activities you’ve had to give up. For some, accepting limitations and life changes can take a long time. Teresa told us, “My acceptance has been in fits and starts. It was prolonged grief for me because I didn’t know what was wrong with me at first. I felt guilt. I thought I was lazy. I kept thinking, ‘This isn’t who I am.’” Yet over time, Teresa got better at differentiating between things she could change and things that she couldn’t. She said, “At the end of the day, PAH is beyond my control. But how I choose to live with it is definitely within my control.”
Keep in mind that acceptance doesn’t mean giving up. By accepting what you absolutely can’t change today, you’re less likely to tire yourself out fighting unwinnable battles, and you’ll be left with more energy to take a fresh look at what you can change tomorrow. According to Diane, life with PH “is a balancing act of knowing what you can and cannot do. Each day is different.”
Make Positive Changes Where You Can: Once you’ve accepted what you can’t change, it gets easier to zero in on areas of your life where you are willing and able to take control. Here are some suggestions for implementing positive changes to improve your self-image:
Call in reinforcements. Surround yourself with friends and family who make you feel good about yourself. And don’t limit yourself to two-legged friends either. One patient told us, “The thing that helped me the most was going to the humane society and getting a dog. My dog loved everything about me. He saved my life.”
Be good to your body: Rather than focusing on the body you think you should have, focus on the body you do have. One patient told us, “When I was stuck on how fat I was, it didn’t matter what I ate because I was already overweight. What helped me was when I started putting my health at the centre of every decision I made. Instead of stuffing potato chips down my throat, I started eating less sodium and feeling better.” Work with your PH team to develop a nutrition plan, make sure you’re getting plenty of sleep, and don’t push your body too hard when it’s telling you it needs rest.
Stay active: Talk to your PH doctor about developing an exercise plan. Low-level aerobic exercise, even just a daily stroll around your neighbourhood, can be good for your body and mind. One patient started by walking out the back door to the end of her alley and back. Over the course of several months, she extended the walk bit by bit, and today she walks three miles a day. She said, “That was the thing that helped me cope emotionally with my body. Being out in the fresh air, moving my body, having my muscles respond, all these things helped changed my body. Everything happened together. I centred myself."
Celebrate your accomplishments: When you reach a personal goal or finish a project, take the time to recognize your achievement. If you like to write or scrapbook, consider keeping a journal of your milestones. You could take yourself out to dinner, take pictures that remind you of the accomplishment, or make an announcement to friends and family. Finding ways to formally recognize your successes can help you build new, positive identities post-diagnosis.
Change the way you talk about yourself: If you find that you’re putting yourself down a lot (“What’s the matter with me?” or “I’m hopeless!”), challenge your negative thoughts by replacing them with kind words that don’t reflect unrealistic expectations. For example, on low-energy days, many PH patients will tell friends and family that they are feeling lazy. Lazy is a loaded word that implies that you should be capable of doing more. Instead, try using judgment-free language that acknowledges a more basic truth: your body needs rest. Using your feelings and needs as guideposts can be a helpful way of translating negative self-talk into language that’s more compassionate and realistic. Here are some more examples:
PHA is grateful to PH patient and former social worker Teresa Asselin-Hayes for her input and review, and to all the PH patients who contributed their experiences to make this resource possible. PH medical review by Debra Hudock, RN, MSN, CNS, of Akron General Medical Centre in Akron, Ohio.
Understand Chronic I'llness
Millions of individuals are challenged with debilitating and perhaps long term illness for which there may not be a cure. Many of these people may never revisit their ‘previously well’ state of being; physically, psychologically and socially. The life of someone with a chronic medical condition is impacted in ways that a healthy person cannot begin to comprehend. There is tremendous impact to the social, recreational and occupational functioning of someone with illness. Relationships are often compromised and strained as the effects on the family can be as great, but different, than that of the person who is ill. The emotional toll on someone with the challenges of an ongoing illness can be overwhelming. Mood-related symptoms, anxiety, depression, anger, irritability, helplessness and hopelessness are emotions that all those with illness have experienced. In addition, the person with the illness is in a constant state of grieving aspects of themselves that they may not reclaim. Coping with the ongoing effects of illness requires a constant reorganizing and redefinition of self based on the changed reality imposed by the illness.
Any chronic condition has the potential to take on a ‘life form of its' own’ and individuals may feel a sense of powerlessness over their life due to the ravages of the illness. It is imperative that the person with illness recognizes that there are ways that he/she can regain a sense of mastery over aspects of their life, in spite of the medical condition that they are facing every day. With guidance, you can learn ways to attend to the areas of life that still remain under your conscious control. Learning ways to take charge of that which you still have power over creates a sense of well-being that transcends the grasp that the illness has had on you, your attitudes and your approach to life.
For Care Givers
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Multidisciplinary intervention is communication and collaboration among doctors, nurses, caregivers, counsellors, and other professionals. This is to improve satisfaction among participants and improve patients’ satisfaction with quality of care.The patient as well as their medical team need to learn how to manage the particular illness as many illnesses are very complex. The more the individual learns about their illness the better chance they will have to improve their health and keep their independence. A good self-management program for chronic illness is to put in place a team conference proposed plan of management
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Emotional Dimensions of
Maintaining the patient's hope For patients and their families, hope is an integral part of coping. The clinician has a key role in engendering realistic hope. Maintaining hope is key for long-term survivors of HIV infection and long-term survivors of breast cancer. Healthy coping, however, differs from the popular notion of “positive thinking.” It implies the capacity to tolerate and express concerns and emotions not just the ability to put anxieties aside. Being able to discuss the anxieties, uncertainties and fears, losses and sadness that usually accompany severe illness is generally helpful, despite the pressure commonly exerted by family and friends for the patient to always “keep a positive out-look.” “Positive thinking” may represent an attempt to avoid confronting the distress of chronic illness, and doctors who care for these patients and their families are not immune to such patterns of coping. A study of women with breast cancer found that those who sought alternative treatments had higher levels of psychological morbidity: the pursuit of such treatments might thus indicate the patient's distress rather than their well-being.
Moving towards the terminal phase Recognizing that the condition has progressed and that the patient is approaching the terminal phase of their disease may be distressing for staff who have known the patient well. In some cases the patient may be reluctant to discuss the need to change treatment goals or the possibility of death, but in others it is the doctor's avoidance that limits the chance for the patient to raise these issues. Staff may be reluctant to relinquish more aggressive treatments. It is worth remembering that health professionals' appraisals of treatments that they would accept are different from appraisals made by patients with cancer. Patients with a chronic illness sometimes report a surprisingly high level of satisfaction with their quality of life. Also, clinicians may underestimate the quality of life maintained by patients with chronic illness and by elderly patients. Patients may attach greater importance to their mental health than their doctors do; doctors may focus on their patients' physical limitations.
Treatment issues Adverse effects of treatment The side effects of some treatments, for example those caused by steroids, may lead to frustration and anger; these feelings may be mediated by an emotional reaction to changes in the patient's body and symptoms but may also be the direct result of the effect of the treatment on the patient's mood. The clinician may experience guilt about such side effects. Additionally, patients who are angry, demanding, or resentful may engender powerful feelings of rage in staff.
Compliance Although adherence to prescribed treatments may improve the course of a disease, the clinician cannot promise the patient that “being good” will be rewarded; in some diseases, such as diabetes, impairment may still occur. Young patients, in particular, may test limits and challenge the status and knowledge of the staff caring for them. Compliance may be poor even in patients who have had an organ transplanted. There may be conflict between a patient and a clinician about the proposed treatment. In chronic fatigue syndrome, for example, evidence has emerged about the benefits of cognitive therapy and the importance of exercise. If patients and their families are resistant to these approaches, long-term care may be adversely affected.
Psychosocial aspects of care Psychosocial interventions are increasingly being incorporated into routine medical care, and these approaches seem to be effective. In patients with rheumatoid arthritis, the use of interventions to manage stress has resulted in significant improvement on measures of helplessness, dependency, coping, and pain. Comparatively simple interventions that allow patients with asthma and rheumatoid arthritis to express the psychological impact of their disease and other stress have significantly improved symptoms in these patients. The families of patients who are chronically ill tend to be more depressed and are more likely to have other psychological symptoms. Clinicians should be aware of this hidden morbidity among carers.
HOW CAN HEALTH PROFESSIONALS COPE? Recognizing of the cost of caring Clinicians who treat patients with a chronic illness must not ignore their own needs. Clinicians may be exhausted by the emotional needs of their patients. When the clinical course is stormy or the patient rejects treatment or commits suicide the sense of professional isolation and despair may be intense. There is strong socialization against members of the medical profession discussing their own distress for fear of appearing weak. At least half of the physicians in one study reported high levels of emotional exhaustion.
Confronting feelings of helplessness and the limitations of the medical treatments available may elicit a range of responses from health professionals. These responses may include rejecting and withdrawing from the patient, blaming the patient for failing to recover, or taking excessive personal responsibility for the patient's failure to recover. Both under- and over-treatment of the patient may ensue. Such problems are illustrated in the widespread debate over the care of dying patients and doctors' responses to “incurable” suffering.
Health professionals do not work in a vacuum. Medical care is increasingly provided in a complex clinical and ethical landscape of public scrutiny and economic accountability. The technological complexity of medical treatment in areas such as transplantation surgery and intensive care, for example, brings clinicians face to face with complicated ethical issues on prolonging the end of life or allocating resources. Demands are made for “evidence-based care,” but in many areas evidence is either unavailable or limited, causing further concern among clinicians.
Education and training The responses made by health professionals to difficult clinical situations depend on their training and life experiences. The clinical experiences of junior doctors rotating through a range of specialty attachments and participating in specialist training programs frequently fails to provide them with the experience of treating patients over a long period. Short-term contact with patients with severe chronic illnesses in hospital settings may provide junior doctors with a distorted perspective on the course of such illnesses, the role of medical treatments, the needs of patients, and their own potential responses. Surveys of medical graduates show that they are aware of these deficiencies in their training.
Doctors may be well equipped for the biomedical aspects of care but the challenges of understanding and responding appropriately to the psychological, social, and cultural dimensions of illness and health need to be addressed. Many clinicians also feel that providing emotional support for families is a source of stress. Medical education must include information on the emotional aspects of diseases and their impact on the patient, the patient's family, and the clinicians treating them. Communication skills are vital. Clinicians who feel that they have received insufficient training in communication and management skills have significantly higher levels of distress than those who feel they have sufficient training.
Team membership and use of external resources When a clinician is part of a multidisciplinary team it is possible to discuss difficult clinical problems, share the burden of care, and gain access to the specialist skills of other staff and agencies. Non-governmental agencies and volunteer support groups can provide social support, education, and advocacy for patients with chronic physical and mental illnesses. Clinicians have a key role in linking patients with such groups. These organizations can counteract the social isolation and stigma experienced by many patients with chronic illnesses.
Self-care Working excessively long hours is not conductive to providing high quality health care, and clinicians should consider exerting control over their clinical work and setting their own priorities. Clinicians should reflect on the emotional dimensions of their work, including how professional development and training may enhance professional satisfaction and patient care, and the important role that relationships and activities outside of work have in providing balance. Physicians cannot provide excellent clinical care if they fail to nurture themselves physically, emotionally, and spiritually.