Red Skin Syndrome (RSS) – Suffering - 5/8

Red Skin Syndrome (RSS) – Suffering – 5/8

In his 1992 book titled Intoxicated By My Illness Anatole Broyard wrote, “Illness is primarily a drama and it should be possible to enjoy it as well to suffer it. Suffering and joy are often more complimentary than oppositional; each requires the other.”

There is somebody wiser than us, and that is everybody.

Napoleon

There is transformative suffering and this recognizes that suffering can be the foundation of insight and creativity. The opposite of transformative suffering is useless suffering. Useless suffering anticipates no transformation; it only breaks people. RSS patients suffer uselessly 24/7. Their useless suffering is wholly created by the misdiagnosis mismanagement and mistreatment of their skin and the outdated protocols followed by those who treat them.

RSS patients can assuage their suffering by seeking connection with the stories of others who are also suffering with RSS. Their shared experience creates a community that helps them feel less lonely and less crazy. The opposite of this dynamic is found in isolation because suffering intensifies when people feel alone. Support groups like ITSAN, Topical Steroid Withdrawal Group and the NEA have performed well in this area. Indeed, both the reader and the writer in these groups benefit. The reader finds solace in finding others who similarly suffer and the writer finds relief in telling the world what he/she has gone through. Suffering is alleviated somewhat by community but cure is obtained only through appropriate medical intervention that ends the conditions that impose it.

By Dr Marvin Rapaport, MD|2021-10-19T03:16:49-07:00November 23rd, 2015|RSS The Disease, White Paper|Comments Off

About the Author: Dr Marvin Rapaport, MD

In 1978 I initiated and set up the contact and photo dermatitis clinic at UCLA. There was a need to evaluate a large group of patients who exhibited severe eczematoid rashes, especially on the face. Patients were referred from all over Southern California. All patients underwent a lengthy history and examination. Further evaluations included blood studies, allergy patch testing, special sunlight (photo) testing and skin biopsies. From the start it was apparent that most patients experienced a mild dermatitis on various parts of the body that progressively worsened. Their histories always included numerous doctor visits, multiple physicians, and therapy consisting of an increasing amount of corticosteroids. My testing failed to reveal any specific culprit chemicals, cosmetics, perfumes, workplace or recreational exposures. It became increasingly clear that the physician’s therapy, the corticosteroids, was invariably causing the problem. I wrote 7 scientific articles that were published in the most august peer-reviewed dermatologic journals and I gave many lectures at various dermatology meetings. To this day an unfortunate reluctance exists on the part of most physicians to accept this simple concept.