Living with a chronic illness

Facts about chronic autoimmune disease:

  • The National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases that include rheumatoid arthritis, lupus, scleroderma, multiple sclerosis, psoriasis and many others that affect the joints, skin or other organs at random and often without warning.

  • Named a major women's health issue by the NIH's Office of Research on Women's Health, autoimmunity is the underlying cause of more than 100 serious, chronic illnesses. It targets women 75 percent of the time.

  • African American women are three times more likely to get lupus than white women. It is also more common among Hispanic/Latina, Asian and Native American women. It does, however strike children, men and older adults.

  • Rheumatoid arthritis affects one (1%) percent of the population, or a total of 2.5 million Americans. It generally strikes people between the ages of 20 and 50 and is three times more common in women than in men.

  • It has been estimated that autoimmune diseases cost $86 billion per year.
A prescription for developing the doctor-patient dialogue:
  • Be prepared with what you want the doctor to know. Be as clear as possible about how you are physically feeling - - what your symptoms are.

  • Bring with you all information about your medications: names, dosages, when prescribed. Also bring a list of all of your other doctors with contact information. If the doctor prescribes medication, be sure to ask what it is, why it's being prescribed and what, if any, side effects there are.

  • Leave Internet research home. This is unfiltered information. You want to present your feelings to the doctor, not facts. Don't present a diagnosis.

  • If tests are suggested, before you say "no," tell the doctor you would like further information or you would like some time to think about it. Tell the doctor when you will get back to her.

  • Be patient with yourself. Sometimes it's hard to get your "medical story" right and you may try too hard.

  • Do not be cute, coy or try to be charming - be yourself

  • If an experience with another doctor has you feeling resentful, park it at the door.

  • Be prepared not to receive an immediate diagnosis. Medicine is an imperfect art. Have compassion for and patience with your doctor.

  • Remember that a doctor's time is limited. If the doctor spends a only a brief time with you, it does not mean she is indifferent.

  • Work out your fears before you get to the doctor's office. It's okay to be afraid but it's best if your fear doesn't take over the visit.

  • Know how to differentiate between a "crisis" and a "situation."

  • Do not be a doormat. Do not put the doctor on a pedestal.

  • Go with an open heart and an open mind. If it is not reciprocal, move on.
About Alida Brill
Alida Brill, whose best-selling new book Dancing at the River's Edge: A Patient and Her Doctor Negotiate Life with Chronic Illness is a "must read" for anyone living with a chronic illness. A sufferer from chronic complex autoimmune disease, Brill penned this personal memoir with her physician Dr. Michael Lockshin, a world-renowned researcher with New York's Hospital for Special Surgery. The book takes readers through the day-to-day struggles endured by Brill, while revealing the deep concerns and conflicts of a doctor who is engaged in the ongoing decisions to help his patients maintain a reasonably "normal" and full life.

Dancing at the River's Edge lends support to people who battle with chronic illness, as well as their friends and family. The authors are refreshingly candid about all topics that range from sex, suicide, and careers, to frustration, doubt, and keeping arrogance at bay. Readers will be inspired by Brill's determination, spirit and lack of self pity. They will also find a blueprint for a doctor-patient partnership that allows room for honest and ongoing dialogue.

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