Im struggling so hard right now with my health, but also are my friends with Chronic Illness especially Lupus and the other “Invisible AI Diseases”. When I am struggling I immediately look for my music, art or I write. I decided to post parts of the Forward To The Third Edition of the great book…“Coping with Lupus” by Robert H Phillips… but this is written by Dr Harry Spiera, MD.
Here we go….
Lupus is a disease of the immune system that affects primarily women in their childbearing yrs, thought children, men and the elderly can also be affected. Many women develop the disease in the prime of their lives. SLE has a wide array of clinical manifestations, ranging from symptoms that are mildly annoying to symptoms that are life-threatening. It is also unpredictable in its course – a patient with only mild symptoms can become acutely and dangerously ill, whereas another patient with a severe case may improve spontaneously.”
“Life for the Lupus patient is a constant battle”
“Even patients with no organ involvement may have generalized achiness an fatigue as a constant companion. Moreover, SLE is often an “Invisible” disease, in which the patient, though feeling quite ill may appear robust and healthy, particularly to the untrained observer. Patients with SLE may have their symptoms and concerns unappreciated by those around them.”
Treatments used for SLE are not only expensive, but are often associated with side effects that may add to the disease burden, in terms of both health and self-image. The latter is true in patients taking corticosteroids, with which swelling and weigh gain become a terrible problem.
“The goals of treatment in a patient with Lupus are to relieve symptoms, prevent major organ deterioration and allow the patient to live as normal life as possible… Thus both the illness and its treatment are a constant battle for the Lupus patient to fight. It is akin to what Leon Trotsky called “permanent revolution”. He taught that it was necessary to keep battling to achieve one’s goals.”
“All these concerns necessitate the development of coping skills on the part of the patient. The coping skills comprise a combination of the patient’s own resources, family and social support, and intelligent and concerned medical and psychological care.”
Coping With Lupus, edition three, written by Dr R Phillips and forward to this edition by Dr H Spiera.