Invisible Illness Week Features Virtual Conference and Fresh Awareness

CONTACT: Ms. Lisa Copen, founder & director
858-486-4685
www.invisibleillness.com

---

Invisible Illness Week Features Virtual Conference and Fresh Awareness

Did you know that nearly 1 in 2 people in the USA have a chronic illness?* And despite assumptions that most illnesses are a mild inconvenience, if you ask those who live with a disease or chronic pain, you will find it drastically changes their lives. An invisible illness can be a disease that is nearly always unseen like chronic fatigue syndrome (CFIDS) or heart disease to one that progresses from invisible to visible, such as multiple sclerosis or rheumatoid arthritis. One thing is certain: those with chronic illness desire to connect with one another and live life to the fullest. . . but they may not be able to travel and sit through a typical conference.

This is where National Invisible Chronic Illness Awareness Week, September 14-20, 2009 excels, offering a 5-day virtual conference, where all speakers are available to listen to LIVE or later (all session are archived.) Monday through Friday, 9/14-9/18, anyone can log on to www.invisibleillnessweek.com and hear illness experts 4 times a day and even call in with their questions after the presentations. Last year’s shows have had over 12,000 listeners and are also available on iTunes.

There are a wide variety of topics including:
• Finding Health Insurance Coverage with a Pre-existing Condition
• Coping with Chronic Illness in Your Marriage
• Having Your Own Business When You Are Chronically Ill
• Simplifying Your Home and Housework
• Parenting When You are Chronically Ill – Chaos and Confessions

The theme this year is “A Little Help Gives a Lot of Hope.” Thousands of people have joined the cause through social media tools like blogging for the cause, a blog tour, a Facebook Cause and fan page, and Twittering about the event with the hashtag #iiwk09.

Lisa Copen, 40, is the founder of National Invisible Chronic Illness Awareness Week and has lived with rheumatoid arthritis and fibromyalgia for sixteen years since the age of 24.

“We all live with a variety of symptoms and the severity of the pain often changes or moves from one area to another on a daily basis,” says Copen. “But there is an underlying feeling that those we love the most don’t fully comprehend what we cope with minute to minute or the choices we make just to ‘have a life’. This can be more devastating to some than the actual physical pain.”

Copen, who was the recipient of the Audience Choice Our Bodies Ourselves Women’s Health Hero Award this spring says, “We hope to unite some of the millions of people who live with chronic pain and illness silently by offering an oasis of hope and understanding. Illness is never fun, but we hope to connect people to encourage one another, as well as host some fabulous workshops to help people live their best life possible.”

For details visit the web site, http://www.invisibleillnessweek.com

____________

*Source: Chronic Care in America: A 21st Century Challenge Revised

Related articles by Zemanta

• Can Those with an Invisible Illness Park in the Blue Spots Without Others Seeing Red? (invisibleillnessweek.com)

Popularity: 5% [?]

Our Mission

I’m so glad you’re here! You must be feeling so much better!

You look so good! You can’t really be that sick, right?

I saw you out walking your dog… so… when are you going back to work?

If you’ve ever heard one of those comments you understand how hard it is to live with a chronic illness that is invisible. The truth is, most people don’t even realize just how invisible most illnesses are! The ill are expected to look ill; we’re expected to live in sweats and have dark circles under our eyes. To fully live, however, we get dressed, put on some cover-up and push our way through the day doing what needs done.

By letting others know that you have an illness, you will provide valuable information to healthy people about the challenges of living with an invisible chronic condition, thus providing a more understanding environment.

Together we can make a difference! National Invisible Chronic Illness Awareness Week, September 14-20-2009 is a designated time, worldwide, in which people who live with chronic illness, those who love them, and organizations are encouraged to educate the general public, churches, health care professionals and government officials about the affects of living with a disease that is not visually apparent.

Through programs and resources, we seek to recognize the daily challenges of more than 100 million adults and children who live with invisible illness. Through acknowledging that despite how “well” they look, they live with the ups and downs of a chronic condition, it is our mission, to encourage and offer compassion.

We seek to educate those who do not live with illness on how to reach out to and encourage those with health difficulties, including what to say and not say and how to meet practical needs.

Overall, it is our hope that people who live with invisible chronic illness can legally park in a handicapped parking spot without receiving skeptical looks, that friends and family acknowledge that invisible illnesses are real, and how to not just survive, but truly live–and even celebrate life– despite illness, encouraging others on the same detour in life.

Will you be a part of our efforts to increase awareness? Here are some fast ways to make a difference!

• Join our cause on Facebook and then spread the word
• Watch our video, share it, consider playing it at your support group, place of business, church or other forum. Feel free to post it to your own blog too!
• When you read an article or post you like, take 2 seconds to share it via Twitter, Facebook, or whatever your favorite social network is. Bookmark it too in your social bookmarking tools.
• Order some goodies: a cute summer tote bag, a bumper sticker or license plate (fewer dirty looks if you legally park there with these items on your car!) Give yourself the chance to share that nearly 1 in 2 Americans live with a chronic condition.
• Plan on attending at least a few of our seminars during our virtual conference, M-F of II Week (Sept 14-18, 2009) and share it with your friends.

There are lots of ways to just bring awareness to the people around who care about you. It’s NOT all in your head!

Popularity: 2% [?]

Statistics Overview of Illness

Here you will find many statistics and stories about why we believe National Invisible Chronic Illness Awareness Week is so vital. Feel free to use these statistics anywhere. You can quote the source, or link back to our web page for the source.

• General Overview of Statistics
• Chronic Illness Statistics
• Invisible Illness Statistics
• Mental Illness Statistics
• Emotional Impact of Chronic Illness
• Chronic Illness Coping and Faith Statistics

Popularity: 12% [?]

Emotional Impact of Chronic Illness

I know what it is like to have an invisible illness and a chronic illness. I was diagnosed in 1990 with Meniere’s Disease. In 1994, came Fibromyalgia, Chronic Fatigue Syndrome, and Panic/ Anxiety Disorder. When people look at me, they do not know I am sick

What they don’t know is there are days that I cannot function. If it is not vertigo from the Meniere’s Disease, it is the daily pain from Fibromyalgia. I am constantly unsteady and I fall. I am always tired. I don’t sleep well at night from constant pain.

I am always in a state of panic. Anxiety is really bad, you cannot shut your mind off from any thoughts or feelings. When I tell people that I am sick, they say “well you don’t look sick”.

I do have a supportive family, especially my Mom. She is my best friend. I don’t know what I would do without her. I try to stay informed on my illnesses. I have great doctors that take care of me. I do take a lot of medicines.

But my biggest helper of all, is God.

Terrie T.

I remember when I first became aware of Rest Ministries, I was attending a seminar on Invisible Chronic Illness that was being sponsored by our local hospital.  I had just been diagnosed with both Osteo Arthritis and Rheumatiod Arthritis, and my dear friend who was attending with me was dealing with Fibromyalgia.

We were amazed at the number of people in attendance at the seminar, both men and women, all of whom looked perfectly normal and healthy just as we did.  But as I looked closer around the room I could see the visible signs of the Invisible Illnesses.  The mis-shaped hands of the chronic arthritis sufferer or the grimace on the face of someone who simply needed to change position in their chair.

Yes, we all looked the picture of health, but when we are grocery shopping we walk slower, have trouble reaching items on high shelves, can’t bend down to get things from the low shelves, or worse yet, we only go shopping when someone can go with us to help with these issues and more, like carrying the groceries into the house and putting them away.

Some of us even still feel guilty when we park in a handicaped parking place, we look so normal, but have so many issues to deal with and by the time we get home from errands or even one errand, we have to recouperate before accomplishing even the simplest task at home.  Chronic Invisible Illness means living a delicate balance between what needs to be done and what we can actually accomplish, between knowing our limits and making sure the others in our lives take these limitations seriously.

Carolyn J.

Popularity: 12% [?]

Statistics – Chronic Illness

• Nearly 1 in 2 Americans (133 million) has a chronic condition
  Chronic Care in America: A 21st Century Challenge, a study of the Robert Wood Johnson Foundation & Partnership for Solutions: Johns Hopkins University, Baltimore, MD for the Robert Wood Johnson Foundation (September 2004 Update). “Chronic Conditions: Making the Case for Ongoing Care”.

• By 2020, about 157 million Americans will be afflicted by chronic illnesses, according to the U.S. Department of Health and Human Services. Chronic Care in America

• That number is projected to increase by more than one percent per year by 2030, resulting in an estimated chronically ill population of 171 million. Chronic Care in America

• 96% of them live with an illness that is invisible. These people do no use a cane or any assistive device and may look perfectly healthy. 2002 US Census Bureau
• Sixty percent of the chronically ill are between the ages of 18 and 64.
  Chronic Care in America

• 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases
  The Growing Burden of Chronic Disease in American, Public Heal Reports / May–June 2004 / Volume 119, Gerard Anderson, PhD

• 9 million people are cancer survivors with various side effects from treatment
  American Cancer Society

• The divorce rate among the chronically ill is over 75 percent
  National Health Interview Survey

• Depression is 15-20% higher for the chronically ill than for the average person
  Rifkin, A. “Depression in Physically Ill Patients,” Postgraduate Medicine (9-92) 147-154.

• However, the significance of one’s faith has shown to lower one’s risk of depressive symptoms and aid one in better handling a stressful medical event.
  Pressman P., Lyons J.S., Larson D.B., Strain, J.J. “Religious belief, depression, and ambulation status in elderly women with broken hips.” American Journal of Psychiatry 1990; 147(6): 758-760.

• Various studies have reported that physical illness or uncontrollable physical pain are major factors in up to 70% of suicides Mackenzie TB, Popkin MK: “Suicide in the medical patient.”. Intl J Psych in Med 17:3-22, 1987

• and more than 50% of these suicidal patients were under 35 years of age
  Michalon M: La psychiatrie de consultation-liaison: une etude prospective en milieu hospitalier general. Can J Psychiatry (In French) 38:168-174,1993

• About one in four adults suffer from a diagnosable mental disorder in a given year;
  Kessler RC, Chiu WT, Demler O, Walters EE. Prevalence, severity, and comorbidity of twelve-month DSM-IV disorders in the National Comorbidity Survey Replication (NCS-R). Archives of General Psychiatry, 2005 Jun;62(6):617-27.

• and more than 90 percent of people who kill themselves have a diagnosable mental disorder
  Conwell Y, Brent D. Suicide and aging I: patterns of psychiatric diagnosis. International Psychogeriatrics, 1995; 7(2): 149-64.

• Four in five health care dollars (78%) are spent on behalf of people with chronic conditions
  The Growing Burden of Chronic Disease in American, Public Health Reports, MayJune 2004 Volume 119 Gerard Anderson, PhD

• Those who use their religious faith to cope are significantly less depressed, even when taking into account the severity of their physical illness. In fact, the clinical effects of religious coping showed the strongest benefit among those with severe physical disability. Some 87 patients hospitalized with serious illness who also then suffered depression were followed over time in another study. The patients with a deep, internalized faith recovered faster from the depression, even when their physical condition wasn’t improving.
  Kendler, K.S., Gardner, C. O., and Prescott, C.A. “Religion, Psychopathology, and Substance Use and Abuse: A Multimeasure, Genetic-Epidemiologic Study,” American Journal of Psychiatry 1997; 154: 322-329. Koenig, Harold G., Larson, David B., and Weaver, Andrew J. “Research on Religion and Serious Mental Illness,” in Spirituality and Religion in Recovery from Mental Illness, ed., Roger Fallott. New Directions for Mental Health Services 1998; (80).

Popularity: 21% [?]