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Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

September 29, 2010 by admin  
Filed under Free Ways to Help, Statistics & Stories, What's New, How to Help

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blue rose Speak Out and Take This Survey on Invisible Illnesses and Hidden DisabilitiesLaura Brydges, B.A.Sc., M.A., and Jennifer Martin, PhD, Industrial/Organizational Psychology have put together a survey about invisible disabilities and have asked those involved with National Invisible Chronic Illness Awareness Week to be involved!

These women bring their personal experiences of having disabilities together with more than 30 years of research and health communication expertise. They began a group last year on Facebook called “Hidden Disability” and now have launched an invisible illness and hidden disability survey that asks some very important questions about disability. It is a secure and confidential English-language survey that will give adults everywhere their chance to share their opinions on some new disability issues.

The survey is the result of advocacy efforts of two women who both have disabilities. They have funded this research through garage sales, and are relying on word-of-mouth for this survey to reach as many people world-wide as possible. So please forward this message onto all of your contacts, friends and family, and ask them to take part too.

The survey should only take 15 to 20 minutes to do.


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Speak Out and Take This Survey on Invisible Illnesses and Hidden Disabilities

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Our Favorite Resources! Associations, Foundations, and More!

September 6, 2010 by admin  
Filed under Online Ways to Help, Statistics & Stories, Today's News, Announcements

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paper people Our Favorite Resources! Associations, Foundations, and More!This is a list we put together with some of our favorite organizations. If you have one you would like added, leave a comment below and we will update the list soon.

(This collection of links is copyrighted. Please don’t copy and paste it to your web site.)

INTERNATIONAL________________

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Our Favorite Resources! Associations, Foundations, and More!

 

 

 

 

www.caringbridge.or

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Internet is Widely Used for Crucial Health Info

May 16, 2009 by admin  
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manwoman computer Internet is Widely Used for Crucial Health InfoHow often do you look up a symptom? Or information on a new medication your doctor wants you to take?

In a recent study, it was discovered that 58% of those who found the internet to be crucial or important during a loved one’s recent health crisis say the single most important source of information was something they found online.

*Pew Internet and American Life

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Does Mental Illness Count? YES!

May 13, 2009 by admin  
Filed under Christian Resources, Statistics & Stories, Today's News, Announcements

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lonely woman Does Mental Illness Count? YES!We are frequently asked if Invisible Illness Week includes mental illness. Yes!

It’s invisible, right? While we would like to expand our resources for those living with mental illness, we do have few. Please feel free to email us more or articles you may have.

> Mental Illness Awareness Week is Oct 4-10, 2009
> See statistics here

HOW DOES “THE CHURCH” ADDRESS MENTAL ILLNESS?

Since NICIAW is sponsored by Rest Ministries a Christian organization, we want to also take a look at how mental illness is addressed by churches. Living with a mental illness, whether it’s bi-polar, schizophrenia, depression or one of the many other mental illnesses, it is a frustrating, experience that can leave one feeling somewhere between annoyed with themselves and life, to being suicidal.

Imagine turning to the church for encouragement and understanding and being told that if you “just prayed harder,” it would go away.

As our population continues to age, the faith community has become more proactive in finding ways to meet the growing needs of those who suffer from chronic conditions cause by aging and the body’s degeneration.

However, there is still a large attempt to educate the church about those who live with invisible illnesses, such as lupus or fibromyalgia, as well as the millions who live with mental illness.

Unfortunately, our churches are ill-equipped to reach out to this community of people because they basically don’t know how. But churches do not need to know everything about mental illness in order to create comforting and accepting place.

In a speech entitled, “Stigma of Mental Illness: The Role of the Faith Community,” Gunnar Christiansen, M.D. presented at the 2003 NAMI Oregon Convention, he said, “Spiritual strength will diminish, however, unless it is constantly nurtured through giving and receiving loving care in our relationships with others. Thus it is of major importance that each of us attempt to develop a welcome and spiritually nourishing environment for those affected by mental illness in our own place of worship.”*

A variety of resources are available for those who live with mental illness and are looking for Christian support. We recommend the following:

Participate in National Invisible Chronic Illness Awareness Week. Mental illness is an invisible illness and we are looking for more representatives to join us in spreading the word and educating others.

SECULAR RESOURCES
NAMI (National Alliance for the Mentally Ill)
National Mental Health Association is the country’s oldest
and largest nonprofit organization addressing all aspects of mental health and mental illness
NARSAD The Mental Health Research Association by National Alliance for Research on Schizophrenia and Depression,
The National Network of Adult and Adolescent children who have a Mentally Ill parent/s. Australian- but still great resources.
FAITH RESOURCES
National Alliance of Mental Illness (NAMI)”Faith Net” The
“religious” department of this organization which seeks to bring awareness to religious communities about mental illness facts.
Pathways to Promise is an interfaith technical assistance and resource center which offers liturgical and educational materials, program models, and networking information to promote a caring ministry with people with mental illness
and their families. These resources are used by people at all levels of faith group structures from local congregations to regional and national staff.
Mental Health Ministry Resources Books, tapes, resources, wonderful!
Mental Illness and Faith Communities Helping faith communities become caring congregations – excellent. Be sure to read the articles/brochures/inserts available.
*Substance Abuse and Mental Health Services Administration – National Mental Health Information Center – Article: Building Bridges: Mental Health Consumers and Members of Faith-Based and Community Organizations in Dialogue

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Study Surprisingly Shows that Chronic Illness is a Taboo Subject

May 13, 2009 by admin  
Filed under Articles, Statistics & Stories

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advice Study Surprisingly Shows that Chronic Illness is a Taboo SubjectIt seems like every where we turn someone is giving us advice on how to treat or cure our illness, what doctor to see, what new potion to drink, or what pill to swallow. Evercare recently did a study on health advice, however, and as someone with a chronic illness you may be surprised to hear the results!

[October 11, 2007 08:40:42 PM PST THURSDAY, Oct. 11 (HealthDay News) ]

– Along with taboo topics such as politics and religion, many Americans are reluctant to discuss managing a chronic illness with family or friends, according to a new survey of more than 1,000 adults.

The survey, released Oct. 11, found that 82 percent of respondents said they knew someone with a chronic illness, but only 34 percent were likely to suggest ways for this person to better manage their care. That’s about the same number who said they’d debate politics (37 percent) or religion (33 percent) with a loved one or friend.

Respondents were more likely to discourage friends or loved ones from buying the wrong house (65 percent), loan them a large amount of money (56 percent), advise them against taking a job they didn’t think was right for the person (48 percent), and tell them their spouse was unfaithful (41 percent).

The survey was released by Evercare, a provider of health plans for people who have chronic illnesses, are older, or have disabilities.

The reasons why many Americans are reluctant to offer advice to chronically-ill friends or family include:

  • They think the person has the situation under control (66 percent); they are not a health care professional (31 percent)
  • they don’t want to seem like a nag (31 percent) or rude (29 percent)
  • they don’t believe the person would listen to them (27 percent)
  • they didn’t think the matter was that important (15 percent).

Other findings:

Twenty percent of respondents said their spouse was the easiest person to give advice to about health, followed by a child (20 percent), mother (13 percent), and father (5 percent).

Most respondents said they’d prefer to receive advice about managing a chronic illness from a health care professional (67 percent), followed by a spouse (10 percent) or parent (7 percent). Men were twice as likely as women (14 percent versus 7 percent) to have their spouse give them such advice.

Men have an easier time offering health advice to their spouse (28 percent) than women (19 percent). Women have an easier time offering health advice to their children (24 percent) than men (16 percent).

Thirty-four percent of respondents said the person closest to them with a chronic illness is a parent (34 percent), followed by another relative (16 percent), spouse (14 percent), friend (11 percent), sibling (8 percent), and child (6 percent).

Evercare offered tips on how to help family or friends with a chronic illness:

Talk to them in order to get an understanding of their goals. Get the conversation started by discussing events or activities they used to enjoy or future events they want to be part of, such as a family reunion. Once you understand their goals, you can help them achieve them along with health care providers, doctors or community service agencies.

Appoint an “ambassador” — someone your friend or loved one feels comfortable talking with and respects enough to heed his or her advice. This person can help your friend or family member manage their condition.

Increase your comfort levels by educating yourself about the person’s chronic illness. This will make you feel more comfortable speaking with them about the condition and reinforcing the advice the patient has received from their doctors.

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Personal Stories

May 6, 2009 by admin  
Filed under Statistics & Stories

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458939532 9094e98da0 m Personal Stories
Image by Martin_Heigan via Flickr

Why do we do what we do? It only take a few minutes of reading these testimonials and you will understand.

We also invite you to share your story! You never know who it may encourage.

My Aching Bones

In July, 1985, I had just started a new job working in the laboratory at a local hospital. It was an exciting job, something I truly enjoyed. I was a medical transcriptionist for two pathologists. I loved my job. I eventually went to nursing school as a direct result of working in the laboratory. I wanted to be part of the medical team.

One day, however, I woke up feeling a little “stiff”. When I placed one foot on the floor, then the other, I felt excruciating pain that I had never before experienced. My feet felt like they were on fire. I could barely walk to the bathroom to get ready for work. Every inch of my body hurt. I had severe neck pain. Since my job was new, I decided not to call in sick and hoped that this pain would go away.

When I arrived at work, my boss was concerned about the way I was walking. She decided to run a few blood tests on me. Everything came back negative and the mystery continued. I didn’t have a cold or flu. I didn’t have a fever, sore throat, or runny nose. I just hurt all over.

Thus began my invisible illness. It would be years before I found out what I had, and for years, I went from doctor to doctor trying to find out what was causing my pain. I was prescribed antidepressants, high-dose anti-inflammatory medications (ibuprofen, etc.), and I watched everything I ate. One doctor treated me like a drug addict looking for pain medicines.

Unfortunately, the medical community labels people who go from doctor to doctor as drug addicts and hence, the term “drug-seeking” behavior was born. This just adds insult to injury. Doctors can certainly be cruel when they can’t figure out what is wrong with a patient. Sometimes it’s easier to label a patient than to research and find out what is really going on, especially if the patient appears to be otherwise healthy.

This is called chronic or invisible illness. And so, it would be another 16 years before I would find out what was causing my pain, and an unlikely doctor would solve the puzzle.

National Invisible Chronic Illness Awareness Week is the latest tool in the fight for recognition of things unseen and undiagnosed.

Beverly was born and raised in Detroit, Michigan. She currently resides in Orlando, Florida. She is the mother of 3, grandmother of 10, and currently is a writer/blogger. She has decided to fight her invisible illness with the use of chiropractic care and nutrition. Her complete blog can be found at www.meandmyrheumy.blogspot.com.

Personal Stories

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Chronic Illness Coping and Faith Statistics

May 6, 2009 by admin  
Filed under Christian Resources, Statistics & Stories

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Majority of Doctors Say Faith Helps Patients – A survey finds that 85 percent of U.S. doctors believe religious faith can help patients have a good outcome. Researchers polled 1,144 doctors for the study, which was published in the Archives of Internal Medicine, The Los Angeles Times reported. Only 1 percent said they believe religious faith and spirituality have a negative effect, while 2 percent said it has no effect and 12 percent said they think the positive and negative effects are balanced.

Doctor shares viewpoint on praying with patients – (Excerpt) “After a few moments, the parents turned to me and asked for my hand. Uncertain, I extended my fingers to touch the mother’s. “Please pray with us” was the request, and, following their suit, I bowed my head. Their moving prayers sought God’s help in curing the boy and pledged their acceptance of his decision…”

Majority of Doctors Say Faith Helps Patients -

ASIA: Scientists find religion good for health – “While meditation is known to reduce stress, blood pressure, heart rate and anxiety, Dr Jantos says prayer is far less accepted as having a place in the secular medical arsenal. But he says it can be of equal benefit to patients — even if doctors don’t think it will work.”

Ill Teens with Spirituality Cope Best -

Physicians View Religiosity as Factor in Patients’ Health – A majority of physicians in a large survey declared that religion and spirituality, including divine intervention, affect their patients’ health. The survey of more than a thousand practicing physicians found that 56% believe religion and spirituality have a significant effect on health, researchers reported in the April 9 issue of the Archives of Internal Medicine.

Can Faith Makes Us Feel Less Pain? Studies Prove Yes -

Spirituality, religion helps lower BP – A study of more than 5,000 African Americans has found that being involved with or participating in religious activities can significantly lower blood pressure, even in those people who are likely to be classified as hypertensive, having higher levels of body mass index (BMI), and lower levels of medication adherence

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Statistics Overview of Illness

May 6, 2009 by admin  
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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.

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Emotional Impact of Chronic Illness

May 6, 2009 by admin  
Filed under Statistics & Stories

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3422508116 dc87772336 m Emotional Impact of Chronic Illness
Image by t_buchtele via Flickr

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.

Emotional Impact of Chronic Illness

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Statistics – Chronic Illness

May 6, 2009 by admin  
Filed under Statistics & Stories

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  • 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”.
  • 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).
Statistics Chronic Illness

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