| Emotional Adjustment and Scleroderma |
 Hello, I am Janey Willis, ISN Guide to Emotional Adjustment. I know from experience that scleroderma can place unique demands on patients and caregivers alike. I have systemic scleroderma (SSc). It is common to suffer reactive depression with scleroderma. If you or someone you care about is having a difficult or suicidal time right now, call your nearest suicide hotline, or a doctor, or hospital. This is a medical emergency and it is okay to go to the emergency room or to call for help from your local police or fire department. The important thing is to make a call—any call—until you find help. | |
| Emotional Adjustment and Scleroderma (MAIN MENU) |
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| Coping with Scleroderma |
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| Overview of Coping with Scleroderma |
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| A healthy emotional adjustment is an important part of having a good quality of life (QOL). It is even more important when you have a chronic illness such as scleroderma. Maintaining healthy routines such as exercise and diet, taking your medications properly, staying close to family and friends, and knowing how you feel emotionally and physically all contribute to your overall state of being. |
| It is necessary to be able to evaluate your state of mind, to really know how you feel and to face those feelings. Find out what triggers your emotions: positive and negative emotions. If you can not avoid the negative triggers, then learn how to cope with the emotions that follow. Find and develop those stategies that work for you. |
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| Some Simple Steps for the Stressed-Out. Large numbers of people across the country are trying to quiet their apprehension with drugs or drink, or have turned to antidepressants, anti-anxiety medications and sleeping pills. But after decades working not only in Washington but also with war-traumatized populations overseas, I've found there are simple strategies for helping people cope that are easy to learn, practice at home and, in these stressful times, free. James S. Gordon. Washington Post. 09/29/09. (Also see: Reducing Stress) |
| Treatment For Chronic Illness Must Be Less Disruptive In The Daily Lives Of Patients. Professors Carl May, Victor Montori, and Frances Mair write: "Chronic disease is the great epidemic of our times, but the strategies we have developed to manage it have created a growing burden for patients". This treatment burden leads to poor observance, wasted resources, and poor results. Medical News Today. 08/12/09. |
| Disease and Symptom Burden in Systemic Sclerosis: A Patient Perspective. Patients with SSc report significant symptomatic and emotional burdens, which, in turn, affect their Quality Of Life (QOL) and psychological well-being. J Rheumatol 2007;34:1718-26. |
| Emotional Adjustment and Diabetes. For all people, whether they have diabetes or not, healthy emotional adjustment is an important part of having a good quality of life. If you have diabetes, it is even more important. Diabetes Association of Greater Cleveland. |
| Coping Strategies |
| Doctor/Patient Communication Tips. Quackwatch |
| How to Care for Yourself. Dozens of helpful ways to help you deal better with arthritis. Arthritis Foundation |
| Coping With Autoimmunity. A few basic suggestions are crucial for you to consider in order for you to manage your illness better. American Autoimmune Related Diseases Association. |
| 10 Things to Say to a Sick Friend. Often times people are told what not to say. This is a great help in giving them an idea of what to say!” Here’s a sample of suggestions from the Twitter community for what to say to a sick person. Elvira G. Alettam, PH.D. World of Psychology. 08/21/09. |
| Does A Cup Of Tea Reduce Stress? Several daily newspapers in the UK and elsewhere carry reports this week of a study commissioned by the Direct Line insurance company that suggests a cup of tea reduces stress, not just by drinking it but also because of the calming effect of the ritual of putting the kettle on. Medical News Today. 8/14/09. (Also see: Stress) |
| The happiness-health connection. Want to improve your health? Start by focusing on the things that bring you happiness. There is some scientific evidence that positive emotions can help make your life longer and healthier. Tips and Tricks. Harvard HEALTHbeat. 03/24/09. |
| Writer reveals struggle with chronic illness. ``Never before have medicine and society had to contend with issues like the effects of caregiving on young marriages and relationships or seriously ill young adults having children on such a large scale, but here we are,'' Edwards writes. PatriotLedger.com. 09/09/08. |
| Can I be ill and happy? Philosophy lecturer, Havi Carel debated that in theory. Then she had to put it into practice. Telegraph.CO.UK. 0/15/08. |
| The Healing of a Serious Illness. The most effective strategy is to confront the problem, act accordingly, and let whatever happens in the future flow from your actions rather than your fears. Joel Nathan. HealthNews. 08/30/08. |
| Coping with chronic disease. What makes one person despair and another adapt? And what can we learn from it? A team of psychologists from the Netherlands set out to find out. They trawled though a decade of scientific research on how patients react to chronic disease, and what coping mechanisms helped them adapt. The Pulse. ABC Health & Well Being. 07/31/08. |
| Social support: Tap this tool to reduce stress. Having close friends and family on whom you can count has far-reaching benefits for your health. Here's how to build and maintain these essential relationships. Mayo Clinic. (Also see: Causes of Scleroderma: Stress) |
| Making patients move requires the right exercise advice. It is common knowledge that regular exercise supports physical and mental well-being. Despite this and recommendations from health care providers, the majority of patients with chronic illnesses remain inactive. Physorg.com. 07/23/08. |
| Dan Harper: Sickness is a canker on the soul. "The cure for this ill is not to sit still, or lounge about with a book by the fire; but to take a large hoe and a shovel also, and dig till you gently perspire." Santa Cruz Sentinel. 06/22/08. |
| Life's little pleasures can relieve illness, stress. Everyday positive experiences may greatly improve the lives and outlooks of people struggling with chronic illness or other long-term stresses. Kim Painter, USA TODAY. 05/12/08. |
| Disease Management Programs. Disease management programs that help guide the care of patients with chronic health problems appear to improve the quality of health care, but there is little evidence that such efforts actually save money, according to a study issued by the RAND Corporation. Medical News Today. 12/11/07. |
 But You Don't Look Sick: The Spoon Theory. I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. Butyoudontlooksick.com. |
| The Common-Sense Model (CSM) of self-regulation of health and illness: how can we use it to understand and respond to our patients’ needs? The key construct within the CSM is the idea of illness representations or ‘lay’ beliefs about illness. These representations integrate with existing schemata (the normative guidelines that people hold), enabling them to make sense of their symptoms and guide any coping actions. Editorial. Rheumatology 2007 46(6):904-906. |
| Fibromyalgia: Ten Strategies for Maintaining a Positive Attitude Deborah A. Barrett, Ph.D. |
| Low impact aerobic exercise reduces fatigue in autoimmune conditions says multi-study review. A review of research shows that low impact aerobic exercise, such as walking and cycling, can effectively reduce fatigue in adults with chronic autoimmune conditions. PressZoom.com. 11/30/06. |
| Daily occupations and well-being in women with limited cutaneous systemic sclerosis. Loss of occupations, low satisfaction with leisure, perceived fatigue, shortness of breath, and pain indicated poorer well-being in women with scleroderma and need to be focused on in occupational therapy interventions. PubMed. Am J Occup Ther. 2005 Jul-Aug;59(4):390-7. (Also see: Limited Scleroderma) |
| Coping and Cognitions as Predictors of Psychological Distress in Scleroderma. Coping and cognitions are mediating variables predicting psychological distress in SSc. Interventions to improve patients' well being should focus on active coping and expression of emotions. Acceptance and helplessness are individual disease cognitions related to distress and should be addressed as well. W. Van Lankveld. FRI0064 EULAR 2005. |
| Support Group Stories |
| The New Reality. Patients diagnosed with a chronic illness need help to cope with emotional fallout. TheRecord.com. 11/07/08. |
| Francisco J. Castellanos. ISN Support Group Leader, Bogotá, Columbia: Asociación Colombiana de Esclerodermia. Our association has many diverse activities, including monthly meetings with members; workshops and conferences directed by medical specialists; and the Scleroderma Quality-of-Life Program (Programa Esclerodermia con Calidad de Vida). |
| Scleroderma patient starts support group to share strength. Rachel Ebert, 70, suffers from scleroderma, and moved to Florida from Pennsylvania eight years ago, for the warmer climate. Ebert has had scleroderma since she was 37. Palm Beach Post. 06/13/07. (Also see: Support Groups Worldwide) |
| Evaluating State of Mind and Triggers for Our Emotions |
| Emotion regulation in patients with rheumatic diseases: validity and responsiveness of the Emotional Approach Coping Scale (EAC). The Emotional Approach Coping Scale (EAC) measures active attempts to acknowledge, understand, and express emotions. Although tested in other clinical samples, the EAC has not been validated for patients with rheumatic diseases. The EAC is an acceptable and valid instrument for measuring emotional processing and expression in patients with rheumatic diseases. H. Zangi. BMC Musculoskeletal Disorders. 09/03/09. |
| Appearance self-esteem (ASE) in systemic sclerosis--subjective experience of skin deformity and its relationship with physician-assessed skin involvement, disease status and psychological variables. In SSc, ASE proved unrelated to the extent of skin thickness. Psychological interventions aimed at boosting ASE should primarily target the psychological factors acceptance and anxiety. PubMed. Rheumatology (Oxford). 2007 Feb 17. |
| Medical Signs and Symptoms Associated with Disability, Pain, and Psychosocial Adjustment in Systemic Sclerosis. Skin score is strongly associated with disability and pain. Dependent edema has negative implications across quality-of-life (QOL) outcomes. Assessment (including self-report of patient symptoms) of specific medical signs and symptoms may indicate SSc patients experiencing diminished QOL. J Rheumatol 2007 February;34:359–67. |
| Gastrointestinal Manifestations and Health Related Quality of Life in Systemic Sclerosis (SSc). Patients with SSc report poor health-related quality of life, both on a physical and psychological level. GI symptoms are common in SSc and are associated with significantly poorer mental health. S. S. Taillefer. FRI0125 EULAR 2005. (Also see: Gastrointestinal Involvement) |
| Personal Stories |
| Dawn: Confirmed Early Scleroderma I am awaiting surgery for a rotator cuff injury. I now understand this might be a symptom of my scleroderma... |
| Dee B: Limited Scleroderma/CREST Syndrome I also
had the problem with people saying I was a hypochondriac, as at that
stage all the doctors I saw found nothing wrong with me, but I constantly
felt weary and ill... |
| Judy R. Thompson Devlin: Diffuse Scleroderma with CREST He said 1 in 200 people get a disease in their lifetime, and that scleroderma was like having 20-30 diseases at once... |
| Krista: My Caregiver's Story All those years beside him, seeing him suffering, being frustrated about the fact that I could not do anything to help him... |
| Lidia: Scleroderma Discovering that I was ill with scleroderma was very difficult for me. I remember that day I was with my husband when the doctor talked to us about what my condition was, and how serious it was... |
| (Español/Spanish) Lidia: Sclerodermia Descubrir que padecía de esto fue muy difìcil para mí. Ese día estaba con mi esposo cuando el médico nos habló de lo que padecía y lo grave que era... |
| Serena: MCTD/Diffuse with CREST During her 20 years from onset to diagnosis, her Calcinosis was diagnosed as fungus... |
| Tata P: Diffuse Scleroderma I am thirty-two years old, and I have been suffering this illness since I was nine... |
| (Español/Spanish) Tata P: Esclerodermia Difusa Hola, tengo 32 años, y padezco esta enfermedad desde los 9... |
