What is Reumasutra?
Rheumatic diseases affect many aspects of life, and sexuality is without doubt one of them. This may be caused by a combination of factors, but the most commons are the side effects of drug treatment and symptoms of the disease such as: pain, fatigue, stiffness, functional impairment, depression, anxiety, negative body image self-perception, reduced libido and hormonal imbalance. Physical and emotional problems may cause difficulties with the partner, and contribute to increase anxiety, which leads to a less frequent and enjoyable sexual activity.
Sexual concerns are frequent in patients with rheumatic diseases. There is evidence that patients want their physician to provide them information on sexual issues related to their disease. Simultaneously, they require more responsibility from the health system in addressing their needs. However, in most cases, sexual problems in patients with chronic diseases are ignored by physicians.
Several studies have shown that health professionals have a very positive attitude about talking of sexual disease related problems with their patients, but this attitude is not reflected in their clinical practice and very few refer to begin a conversation about sexuality. The barriers that prevent them to start a conversation about sexuality are: perceived shame of the patient (83%), lack of time in consultation (72%), ethnicity of the patient (59%), domain and knowledge of the subject (56%), own shame (52%), age of the patient (51%) and lack of privacy (47%).
Data shows that despite the fact that sexuality is an important component for patients with rheumatic diseases.
This lack of information about sexuality from health professionals leads patients to seek answers to their doubts in two alternative sources: internet and friends. This could be counterproductive, because we have no control of the information available to patients. In the case of friends, we do not know their level of knowledge on the subject and when it comes to the internet, it can be a good source of information if it is well filtered. Since not all websites offer reliable information, a navigation not well filtered could lead to reinforce some myths on sexuality in rheumatic diseases such as: the sexual act is always painful, the lack of mobility will always make the sexual intercourse not enjoyable, rheumatic patients should not have sex to avoid harm, the only way of feeling satisfaction is through sexual intercourse, among others.
Our group seeks to leave behind the complicity by omission in the reinforcement of myths about sexuality in rheumatic diseases. Reumasutra standardizes information and communication on the challenges associated with sexuality in a rheumatic disease. This will help to reduce uncertainty, concerns, and feelings of guilt in rheumatic patients.
The main objective is to educate in sexuality with high quality and reliable information in a practical and attractive way. Since the primary source of information used by patients is the internet, our aim is to develop an online platform (website) combining videos, forums and information through which we will:
• Give examples and discuss couple problems related to sexuality, including the fears of couples of causing pain or anxiety during sexual activity, among others.
• Give examples of sexual expressions including different sexual positions so patients with physical impairments have the opportunity to explore them.
• Provide guidelines or tips to make sexual activity enjoyable (use of analgesics, muscle relaxation, etc.)
• Propose alternative methods of sexual expression.