Despite over 100 million USA residents living with a chronic condition, most people still don’t know that much about chronic illness.
In a society where if you are ill you take a pill–and soon recover, the idea that you may have an illness forever–well, people tend to think that just happens to people with poor lifestyle choices, like smoking and drinking and such.
Here is a lit of 25 facts about chronic illness and invisible illness. Feel free to share and be sure to follow us @invisibleillwk on Twitter.
RT @invisibleillwk #iiwk10 Fact #1 Nearly 1 in 2 Americans (133 million) has a chronic condition. Not U? It’s someone U luv! http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #2 About 96% of illnesses are invisible. No visible signs and no assistive device used. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #3 The significance of one’s faith has shown to help one handle a stressful medical event better http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #4 Sadly, the divorce rate among the chronically ill is over 75 percent http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #5 ppl with illness are young! 60% are between the ages of 18 and 64 http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #6 By 2020, about 157 million Americans will be afflicted by chronic illnesses. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #7 90% of seniors have at least one chronic disease and 77% have two or more chronic diseases. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #8 Depression is 15-20% higher for the chronically ill than for the average person. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #9 Sadly, physical illness or uncontrollable physical pain are major factors in up to 70% of suicides. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #10 About one in four adults suffer from a diagnosable mental disorder in a given year. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #11 Invisible illness includes #autism, #bulimia, #migraine pain, #arthritis, #bi-polar disorder #depression. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #12 More ppl need pain treatment than those w/ cancer, heart disease, stroke & diabetes combined. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #13 Less than 2 hours is spent on pain management in most medical school curriculum http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #14 Most people prefer illness mgmt advice from health professionals before their spouse http://ow.ly/72fO
RT @invisibleillwk #iiwk13 Fact #15 19 million of ppl who are severely disabled do not use a wheelchair, cane, crutches or walker http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #16 4 in 5 health care dollars 78% are spent on people with chronic conditions in USA http://ow.ly/72g4
RT @invisibleillwk #iiwk13 Fact #17 Patients with a deep faith recover faster from depression,even when illness doesn’t improve. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #18 Faith reduces stress, loneliness, pain, & anxiety according to American Cancer Society http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #19 Over half of the chronically ill say the worst thing someone can say is “you look great.” http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #20 34% of respondents said the person closest to them with a chronic illness is a parent. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #21 Most medical residents leave med school believing that 80% patients R addicts seeking drugs. http://ow.ly/72gP
RT @invisibleillwk #iiwk13 Fact #22 Over 75 percent of patients with depression complain of physical pains. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #23 The # of ppl in the US 65 > will double in the 25 yrs to 20% of Americans = more illness. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #24 Depression can predispose patients to chronic pain due to chemical imbalance it creates. http://ow.ly/6Otw
RT @invisibleillwk #iiwk13 Fact #25 Faith gives ppl w/ health challenges peace of mind & will to live http://ow.ly/6Otw
Is anyone out there?
One challenge that I particularly face, especially when one considers it is a rare condition–is simply by trying to find an audience for my blog. Again, as I have previously mentioned it is not a common condition with very little information on the Internet or in medical books and have not yet met anyone exhibiting the same condition as myself. As a result, I often wonder if anyone reading my posts can relate to them or if they are relevant to other conditions.
Many of the symptoms are general, such as the dizziness and vertigo can be applicable to many different conditions, and the spastic paraparesis is itself a symptom and can be found in patients with multiple sclerosis and Parkinson’s Disease. But still the question remains whether my blog is helping and making a difference to others. Do I have something of value to add and share with whole health community?
I am too tired to write
The second challenge is being able to keep up with the writing and health activism whilst feeling so very unwell. A lot of the time, I really feel so unwell that the last activity that I feel able to take part in is by going on the internet, and writing or taking part in some other activist related activity. Us health activists need to attempt to learn to balance our lives. Health activism is so important, it often gives us something to focus on besides our illness, and advocating for ourselves and others is an excellent approach to doing just that at, however, it is also important that we take time for ourselves and give ourselves a chance to recuperate when symptoms are bad and to rest as much as possible.
The challenge of educating those who are well
And the third challenge that I personally face, as a health activist is to effectively make people aware and to understand the challenges that patients with an invisible chronic condition face everyday, to let them know that although we make look well, that it is not always the reality.
And in addition to make others aware of the language that people often use around those with invisible chronic conditions – that they are not often useful or helpful and can be really hurtful. Some examples of things not to say to a person with an invisible chronic condition are:
“It’s probably just stress” – this undermines the severity of the symptoms being experienced; as if the person is exaggerating their symptoms as well as undermining the diagnosis given by a qualified medical practitioner
“It’s all in your head” – this can be really undermining and hurtful for someone with an invisible chronic condition; just because you are unable to see the problem does not mean that it doesn’t exist
“You’ve made it! You must be feeling better” – this fallacy is one that I get a lot and can be really infuriating. For my condition and many others there is no quick fix or even a cure and hearing tis proves that invisible chronic conditions are completely misunderstood and no effort is even being made to understand by others. For myself, I often try to make an effort to visit someone for their benefit as well as my own, often the worst thing to do is stay in and feel unwell and often like to leave the house to get fresh air and to have social contact with others
“Everyone experiences that” – I often get this directed towards the dizziness that I constantly suffers and feel that it often minimises the effects of the dizziness, yes, a lot of people experiences dizziness, but it many not be of the same severity that mine is, and often is not felt constantly as mine is.
And there are many more! Can you think of others that people say to you which are not helpful? Please share them with us and perhaps I can do a follow-up piece on the topic!
Rhiann Johns was diagnosed two years ago with what is called a long-standing brain stem lesion and spastic paraparesis. This basically means that she has scarring on the brain stem which, for her, causes chronic dizziness with frequent episodes of vertigo with visual disturbances. The spastic paraparesis causes stiffness and weakness in the legs, making it uncomfortable when walking and means that she is unable to stand for very long. Although, she was only diagnosed 2 years, she has had this since she was born, although the doctors are unsure of how it happened. Although, she has always had problems throughout her childhood and teenage years, she was able to still gain a BSc Psychology. Recently, her condition has deteriorated a lot.
She blogs about it frequently at My Brain Lesion and Me
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
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.
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.
|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.|
|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|
It 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).
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.
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…”
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.”
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.
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
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
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.
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.
- 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).