Join Me for Invisible Chronic Illness Awareness Week

I am honored to announce that next week I will be giving an online seminar as part of National Invisible Chronic Illness Awareness Week.

My seminar, “Secrets of Paying for Health Care,” will start at 5:30 p.m. Pacific Time (7:30 p.m. Central Time and 8:30 p.m. Eastern Time) on Monday, Sept. 8.  It will last approximately 45 minutes and include new information not found on this blog or in the latest version of my book, Unmasking a Diagnosis: How to Find Help for a Confusing Illness Without Filing for Bankruptcy.

National Invisible Chronic Illness Awareness Week, Sept. 8-14, is a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Activities for the week will take place on the event’s web site, http://www.invisibleillnessconference.com/. Registration information can be found on the site.

The focal point of the week will be 20 online seminars, from Monday through Friday, which will cover a variety of subjects. The seminars are open to anyone, including those who have loved-ones with chronic illness.

Seminars topics include:

• Assess Yourself: Find the Job You Desire and Can Do Despite Illness Limitations
• The Civil Rights of Patients with Invisible Chronic Illnesses
• Overcoming Self-Defeating Behaviors
• How to Get Paid to Blog
• After the Diagnosis: The Journey Beyond

The theme this year is “Hope Can Grow From The Soil of Illness.”

According to the Robert Wood Johnson Foundation, which is dedicated to improving the health and health care of all Americans, nearly 1 in 2 people in the United States live with a chronic illness.

So why is it that most of us don’t even know when a friend or co-worker is dealing with diabetes, heart disease, lupus or chronic fatigue syndrome? Because, according to the U.S. Census, about 96% of these people have invisible illnesses.

Lisa Copen, 39, began National Invisible Chronic Illness Awareness Week in 2002 as she continuously witnessed hundreds of people emotionally hurting just because they felt as though no one “got it.” Lisa has lived with rheumatoid arthritis and fibromyalgia for fifteen years and understands how validating it can be to just have one friend who you don’t have to explain everything to.

“Though there are hundreds of illnesses represented, and large differences in symptoms and pain levels, none of that matters more than feeling like someone understands you. When our best friends and family members are skeptical about our disease, it can be that last straw that sets us off into a spiraling depression.”

She says, “We plan to unite the millions of people who live with chronic pain and illness by offering an oasis of hope and understanding, as well as (provide) helpful information and practical tools to live the best life possible.”

In addition to the seminars, guests will be able to access daily guest bloggers, dozens of articles, ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. If you’re tired of those looks when you park in a handicapped spot, be sure to pick up a license plate or bumper sticker.

Read posts by guest bloggers and receive daily updates at http://www.invisibleillnessblog.org

Other Professionals Who Address Chronic Illness

Updated 7/27/08

Certain types of professionals, by training or experience, may better understand that chronic illnesses affect the body differently from acute illnesses. They are listed here in order of accessibility, not competence.

1. Physicians who have realized that the training they received in medical school won’t work very well for chronic illnesses. The tales of some physicians who have questioned the status quo have become legends. These pioneers were forced to think outside the box to meet crises that affected them, their family and/or their patients. Experience is often the best teacher.

2. Board certified holistic medicine specialists. The American Medical Association now recognizes professionals in this area. Though few in number, their ranks and influence are growing. Visit the site of the American Board of Holistic Medicine for more information.

3. Integrative medicine research centers. Integrative medicine combines treatments from mainstream medicine and complementary/alternative medicine. These treatments are backed by high-quality evidence of safety and effectiveness. The Consortium of Academic Health Centers for Integrative Medicine has more than 35 members throughout the United States and Canada.

4. Schools that teach complementary and alternative medicine. Seventeen medical programs and two nursing programs recently completed studies to develop a curriculum for including complementary and alternative medicine (CAM) training in doctor of medicine (MD), doctor of osteopathy (DO) and nursing programs nationwide. Louisiana State University Health Sciences Center School of Medicine also received a grant, but its work was interrupted by Hurricane Katrina. The National Institutes of Health’s (NIH) National Center for Complementary and Alternative Medicine (NCCAM) financed these studies.

The American Medical Student Association (AMSA) received a grant to fund studies at six of the schools. AMSA’s Report on Educational Development for Complementary and Alternative Medicine (EDCAM) included the following statement:

. . . Because of the widespread use of CAM by patients, and the growing scientific evidence that certain CAM therapies are more effective than orthodox alternatives, CAM education must be integrated into medical education in allopathic and osteopathic schools in the near future. . . .

5. Naturopathic Doctors (NDs). NDs treat disease with special diets, herbs, vitamins, massage, etc., to assist the natural healing process. In a departure from traditional naturopathic practice, NDs also perform surgery and prescribe medication. They are licensed to practice as primary care physicians in 14 states, the District of Columbia, Puerto Rico and the U.S. Virgin Islands.

6. Other types of licensed professionals. Acupuncturists and chiropractors often combine other natural therapies to provide relief for chronic ailments.

7. Various types of unlicensed practitioners. Traditional naturopaths, homeopaths and others often recognize underlying conditions that lead to chronic illness, which can give you valuable clues for further research.

Exercise caution when you use their services. The laws vary from state to state. Some allow unregulated practice, some require registration or certification and some ban their practice altogether.

Do your research! Read what’s on the Internet, inquire at a health food store and check with your state about licensing laws. In recent years state and federal agencies have become stricter with even licensed alternative practitioners and their clients.

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From Unmasking a Diagnosis: How to Find Help for a Confusing Illness Without Filing for Bankruptcy, the third edition of the book formerly titled Secrets of Finding a Diagnosis Unmasked and Secrets of Getting a Diagnosis Unmasked

Unmasking a Diagnosis, by Jacqueline L. Jones, is available now as a paperback for $8 and as a download for $6 from Lulu.com.

Government Can Afford Natural Care for All

by Jacqueline L. Jones

The evidence is clear. According to the Centers for Disease Control (CDC), people with chronic illnesses like diabetes and heart disease account for more than 75% of the nation’s $1.4 trillion in medical care costs each year. That figure could jump 42 percent by 2023, according to an Oct. 2007 report by the Milken Institute, a think tank in Santa Monica, Calif.

As the American Medical Student Association (AMSA), the Institute for Functional Medicine (IFM), and practitioners in emerging and ancient disciplines report positive results in fighting these illnesses, the path to reducing health care costs seems clear. Equal access to disease prevention services and effective natural treatments could reduce costs for all.

Read more

Order Tests Directly from Labs

Updated 7/27/08

Many people with chronic illnesses have sought answers through Internet research. During that research, they may have stumbled upon the right answers, but faced resistance from primary care providers unwilling to order the necessary tests.

If you have an idea of what may be ailing you, you have the right to order tests directly from a specialty laboratory. Some insurance companies pay 100% for these services.

Read more

Seek Help with Caregiving Duties (Part 3)

Friends, relatives, neighbors, and people in your local congregation of faith can be a great source of help with caregiving. As I stated in an earlier post, my friends and the few family members in the area are unable to help much. A member of my church recently volunteered to fill in the gap. What a difference her help made!

Read more

Visitors Now Welcome

I’ve never enjoyed entertaining at home. When visitors come, I feel like an animal in the zoo facing observation for a scientific study. The inhabitants of this apartment go into extreme cleaning mode as the observation date approaches. Read more

Angry No More

I’ve spent the better part of the last past 15 years in a rage. The cause: trying to get help for a chronic illness in a medical system that is geared toward acute illness and trauma. My struggles have taught me to believe that “all things work together for good to them that love God, to them who are the called according to his purpose.” (Romans 8:28)

Read more

Product, Not Delivery, Is the Greater Issue

Despite continuing discussions about delivery of health care in the United States, many people with chronic illnesses can attest to the fact that the system does not adequately meet their needs. Some people have opted out of the system altogether. Although that strategy sometimes can be dangerous, I understand the frustration of those who pursue it.

Read more