Living with chronic pain: Affected individuals share experience and give useful advice

Brandenburg an der Havel, 29 February 2024

People living with continuous pain need to try out lots of things and re-adjust on a daily basis. How to cope? What else can I try? How to make others understand my situation? On the website krankheitserfahrungen.de, people talk about life between health and illness, they describe their experiences with medical care, with changes in daily life and the support they receive. The website is a project of DIPEx Germany, located at the Institute of Social Medicine and Epidemiology / Brandenburg Medical School Theodor Fontane (MHB) and currently co-financed by Krebsallianz, a German charity providing cancer treatment and support for people in the developing world. The website offers scientifically sound information and support to affected individuals, families and healthcare professionals such as physicians and nurses in a low-threshold format.

New reports on personal experience with chronic pain

The section “Chronic pain” at Krankheitserfahrungen.de is now online with new reports. The website was relocated from the University of Freiburg to the MHB Institute of Social Medicine and Epidemiology directed by Prof. Christine Holmberg; the section is revised and updated. Interview partners from all over Germany were invited to talk about life with pain. Topics are, among others, back pain, fibromyalgia, joint pains and migraine. One of these people is Rosemarie Lenz. She had been suffering from cluster headache and migraine for 21 years. A head surgery in 2017 had the side effect of freeing her from these pains. Simone Scheck was in her mid-forties when she became aware of growing pain and impairments, specifically after long periods of sitting in the office. Arthrosis primarily affected her hands and knees. She was diagnosed with fibromyalgia in the hands, and in addition with intervertebral disc protrusion which caused back pains. She decided against further surgery and instead opted for treatment with opiates and cannabis. A total of 47 recorded talks with affected patients underwent scientific analysis and are available on the website to be read or listened to.

10 topics on the website

The extended topic “Chronic pain” was among the recently most visited subjects on that website. The number of visitors suggests that the experience of other sufferers is particularly important in this field. The reports are a valuable supplement to medical information. The section on “Chronic pain” is only one among ten on the portal which offers comprehensive information on the following topics: ADHS in children and adolescents, Breast cancer, Chronic inflammatory bowel disease, COVID 19, Colon cancer, Diabetes type 2, Epilepsy, Eating disorders: anorexia and bulimia, Medical Rehabilitation, and Prostate cancer.

The website offers a wide range of experience reports and practical tips for everyday needs, coping strategies and general orientation. In addition it has a collection of information sources on the medical aspects of chronic pain and support measures.

Useful for affected patients, their families and health professionals

The website www.krankheitserfahungen.de is the licensed webpage of DIPEx Germany, the database project for individual patient experiences in Germany. DIPEx Germany is a member of DIPEx International. The aim of this parent organization and its members is an improved understanding of health and illness experiences. Individual experiences are registered and analyzed according to uniform scientific standards and made available to the public at large. This benefits affected patients and their families, health professionals, policy makers and researchers alike. International collaboration produces a unique pool of experiences and permits comparative analyses between countries.

The team involved in krankheitserfahrungen.de thanks all those for their support who helped to find interview partners, and all individuals who were willing to tell their personal story for giving us their confidence and their time. Our particular thanks go to the Foundation Stiftung Krebsallianz and their backing for this module.

Scientific contact:

Prof. Dr. Christine Holmberg
Director, MHB Institute of Social Medicine and Epidemiology
Phone: +49 3381 41 1281
E-Mail: christine.holmberg@mhb-fontane.de