Coping with Scleroderma

Author: Janey Willis. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer.
Overview of Coping with Scleroderma
Coping with a Child's Chronic Illness
Coping Strategies
Support Group Stories
Evaluating State of Mind and QOL
Personal Stories
Personal Stories of Child with Scleroderma


Star Ornament by Shelley Ensz

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.

Positive Outlook on Aging Helps Seniors Heal. Older patients with positive attitudes on aging may be more likely to fully recover from severe disability compared with those who can't see the bright side of life, researchers found. MedPageToday. 11/20/12.

Coping with a Child's Illness

Coping with a Child's Illness can be quite challenging, but with the right resources, knowledge and attitude, it is possible to continue to maintain a sense of normalcy for the child, the caregivers, and the family. ISN

Overview of Coping with Child's Chronic Illness
Personal Stories of Children with Scleroderma

Coping Strategies

Coping Strategies. Coping with scleroderma and any chronic illness can be a challenge. There are many things you can do to make you feel better mentally and physically. One of the worse things you can do is to isolate yourself from the people and things that you love. You should always try to stay active, happy and positive. ISN.

Food and Drink
Pet Therapy
Support Resources
Working with Scleroderma

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).

Evaluating State of Mind and Triggers for Our Emotions

Exploring Sources of Emotional Distress among People Living with Scleroderma: A Focus Group Study. Interventions and supportive resources need to be developed to help individuals with scleroderma and people close to them manage and cope with the emotional aspects of the disease. PubMed, PLoS One. 2016 Mar 23;11(3):e0152419. (Also see Quality of Life with Scleroderma)

Illness perceptions and psychological distress associated with physical health-related quality of life (HRQoL) in primary Sjögren's syndrome (pSS) compared to systemic lupus erythematosus and rheumatoid arthritis. These findings indicate that psychological factors are important correlates of HRQoL in these disease groups. PubMed, Rheumatol Int, 2014 Dec;34(12):1671-81.

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.

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.

Personal Stories

Angel G: Systemic Scleroderma with Raynaud's Phenomenon I noticed that the middle finger on my right hand had turned so dark in color that it was practically black and I actually thought there was ink on it and tried to wash it off. Oh, if only the remedy had been so easy…

Bill: Diffuse Scleroderma I was relieved to have a label for my condition but the doctor was not very reassuring telling me that there was no effective cure or treatment…

Dawn: Confirmed Early Scleroderma I am awaiting surgery for a rotator cuff injury. I now understand this might be a symptom of my scleroderma…

Deborah T: Scleroderma No doctor seems to help me. My doctor just says I have so many problems its hard to know what to do…

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…

Dian H: Diffuse Scleroderma Having to take disability from work is the hardest thing I have ever done. Working at least kept my mind on other things besides the pain…

Franchina: Systemic Sclerosis (Italy) I am sixty-one years old, and I discovered I had this illness eleven years ago. Most likely I had it two years before, but nobody understood what was wrong…

(Italiano) Franchina: Sclerosi Sistemica (Italia) Ho 61 anni, ho scoperto la mia malattia 11 anni fa ma sicuramente l'avevo gia 2 anni prima ma nessuno riusciva a capire niente…

Hazel: Morphea Scleroderma In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye…

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…

Jules: CREST She has left me with no answers or expectations and I'm afraid my obsession will only aggravate my symptoms…

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…

Matilda: Systemic Scleroderma (South Africa) I don't think there is a lot of support in South Africa and I would actually like to start a group where people with the same disease can meet and discuss how they cope with the illness…

Serena: MCTD/Diffuse with CREST During her twenty years from onset to diagnosis, her calcinosis was diagnosed as fungus…

Soledad: Diffuse Scleroderma with CREST I have tried to find different therapies and sometimes I feel fine, but then I have a crisis, I fall, pick myself up again, time and time again…

(Español/Spanish) Soledad: Paciente con Esclerodermia Difusa con CREST He tratado de buscar diferentes terapias y estoy bien por un tiempo pero vienen las crisis y caigo, y vuelvo a levantarme, una y otra vez…

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…

Vivi: Facial Scleroderma (Linear/Morphea or Parry Romberg's) I feel really bad, I want to get better, I want to be pretty, I am hurt when I see my cousins healthy and pretty and I can't stop covering my face because I am ashamed…

(Español/Spanish) Vivi: Esclerodermia Facial (Lineal/Morfea, Parry Rombergs) Me siento mal, quiero curarme, quiero ser bonita, me duele ver a mis primas bien y bonitas y yo no puedo descubrirme la cara porque me da pena…

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