| 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) | | | |
| Coping with Scleroderma |
| |
| Overview of Coping with Scleroderma |
 | | 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. | | |
| 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. |
| Disability, Pain and Dyspnea Predict Levels of Depression in Systemic Sclerosis (SSc). Depressive symptoms are quite common among patients with SSc, both diffuse and limited. Disability, pain and shortness of breath were shown to predict levels of depression. Decreasing disability and treating pain and shortness of breath could prevent high levels of depressive symptoms in SSc. Suzanne Taillefer. 1569/345. ACR 2005. |
| 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 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. |
| Women Living with Scleroderma: A Focus Group Study. A positive attitude, a strong support system, a commitment to moving forward with life, and access to high quality, and timely information all provided the participants with the tools to develop and implement a strategy of self-advocacy in disease management that enabled them to access needed information and services. Cindy Mendelson. 2026 ACR 2006. |
| 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. |
| Suicide Risk, Affective and Anxiety Disorders in Patients with Systemic Sclerosis. Current and lifetime prevalence of major depression was high (53.2%) in our series. Less than 50% of SSc patients with severe depression received adapted psychiatric treatment. The high prevalence of major depression and anxiety disorders in SSc patients can no longer be ignored and systematic screening and psychiatric treatment interventions are needed. Thierry Baubet. 1689/514. ACR 2004. |
| Scleroderma: living with unpredictability. Nurses in all settings, hospital, community, and work, can do much to assist individuals with the management of chronic conditions such as scleroderma. PubMed. AAOHN J. 2003 Aug;51(8):353-7 |
| Psychologic factors in scleroderma. Although complicated, the advent of disease-specific interventions that are administered by way of the Internet may prove particularly useful in a rare illness, such as scleroderma. PubMed. Rheum Dis Clin North Am. 2003 May;29(2):427-39. |
| You've got trauma, but writing can help. Pouring your most painful traumas out on a computer screen can improve your health, according to one of the first studies on how e-mail may influence well-being. USA Today 6/30/02 |
| Support Group Stories |
| 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). |
| The fight against scleroderma continues. Carroll Vapsva and Shirley Haslam suffer from scleroderma, and founded a Mississauga support group for people living with scleroderma. June is recognized as Scleroderma Awareness Month here in Canada. The support group held a gala dinner earlier this year and were able to raise in excess of $30,000 for research and to raise awareness about the disease. Mississauga News. 06/17/07. (Also See: Support Groups Worldwide ) |
| 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 |
| 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) |
| Disease and Symptom Burden in Systemic Sclerosis: the Patients' Perspective. Patients with SSc report significant symptomatic and emotional burden which affects their quality of life and psychological well-being. Additional research is needed in this area to develop, validate and implement relevant patient measures that assess disease burden in SSc. Maria Suarez-Almazor. 1056/436. ACR 2004. |
| Quality of Life in Systemic Sclerosis. Health-related QOL (Quality of life) appears to be particularly low in systemic sclerosis compared to other patient groups, and to significantly decrease over a one-year period. Vanessa L. Malcarne. ACR Conference Oct. 2003. |
| Quality of Life in Scleroderma: Compared to Psoriatic Arthritis, SLE, Rheumatoid Arthritis and Healthy Controls. Quality of life is adversely affected in SSc with a strong correlation between disability and the presence of > 10 tender points, arthritis, high skin score and GI involvement. SSc patients with arthritis are more disabled than those with PsA and experience more severe pain than RA patients. Sindhu R. Johnson. ACR Conference Oct. 2003. |
| Life with a rare chronic disease: the scleroderma experience. Nurses may have little knowledge about scleroderma. It is possible that they, through their ignorance of such rare conditions, may stigmatize individuals. Through understanding about rare diseases will they be able to teach patients the skills necessary to help them cope with their symptoms, as well as the reactions of others to their diagnosis and appearance. PubMed. J Adv Nurs. 2003 Jun;42(6):598-606. |
| Cutaneous Concerns of Scleroderma Patients. The purpose of our study was to ascertain what was most bothersome aesthetically to scleroderma patients. The vast majority of patients with systemic sclerosis have great concerns over changing facial features, and this worsens with age. J Dermatol. 2003 Jun;30(6):438-43. |
| Body image dissatisfaction among women with scleroderma: extent and relationship to psychosocial function. Results suggest that body image dissatisfaction is a significant concern in women with scleroderma and should be assessed routinely. Early identification and treatment of body image dissatisfaction may help prevent the development of depression and psychosocial impairment in this population. PubMed. Health Psychol 2003 Mar;22(2):130-9 |
| Personal Stories |
| Dawn: Confirmed Early Scleroderma I am a waiting surgery for a rotator cuff injury. I now understand this might be a symptom of my scleroderma... |
| 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... |
| 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... |
