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
Laura 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.
Related articles
- Rest Ministries Sponsors Invisible Illness Week (chronicillnesspaindevotionals.wordpress.com)
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Popularity: 13% [?]
How You Can Help This Week! Things to Know
September 12, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, How to Help
Monday, September 13, 2010 kicks off Invisible Illness Week!
There are many ways to get involved in the online activities of the week, but the most important thing to know is…
We will be having an online VIRTUAL conference. What does that mean? Each day, M-F, 10:30-12 PACIFIC you can go directly to http://invisibleillnessconference.com and you will be connected with our workshop automatically at Blog Talk Radio.
Each morning we will have a series of special guest experts who have dealt with illness in their own lives who will be able to answer questions and who will have some key talking points about topics such as coping with illness, parenting, getting organizes, relationships, setting boundaries, working, and of course, the whole “invisible” illness issues.
Here are some other ways to get involved:
Tell someone!
Do you want to email a family member, friend, pastor, counselor, support group leader, your favorite newsletter’s editor? Here is a short description of Invisible Illness Awareness Week – copy, paste, & share anywhere! http://ow.ly/2D1eo
If you have a blog:
Do our meme: “30 Things You May Not Know About My Invisible Illness” (Found here: http://ow.ly/2D1aQ ; Or blog about any invisible illness topic) and then sign up at Bloggers Unite so everyone can find your blog post at http://ow.ly/2D13m Be sure to grab the badge that you are participating too!
Grab the button for your site:
See bottom right side column with code at http://invisibleillnessweek.com
Read about our panelists/special guests:
See someone who you want to make sure your friends know about – be sure to let them know with an email and link to this page:
http://invisibleillnessweek.com/2010/09/08/conf-workshops/
Connect with others: Join the Sunroom group for Invisible Illness Week: http://www.restministriessunroom.com/group/invisibleillness
Download our free 80-page ebook!
20 Experts share their tips about living with a chronic illness. Just sign up for the daily updates from Invisible Illness Week at http://invisibleillnessweek.com (top right side of page), confirm “subscription”, and you will get the download link.
To read blogs of others:
Bloggers who have committed to blogging about invisible illness week or II topics are registered at Bloggers Unite at http://ow.ly/2D13m – Here you can get a description of their blogs too.
Do you tweet? Here are some great things to retweet!
http://invisibleillnessweektweets.wordpress.com
Give a donation!
Have you considered giving a donation to help with Invisible Illness Week expenses? Every little bit helps if you are financially able to give. http://ow.ly/2D1sh
Check out the photos of where people have left sticky-notes this year! http://invisibleillness.com (right column)
If you are on Facebook:
Join our “Invisible Illness Week Cause” http://ow.ly/2D1GP
Be a Fan! http://ow.ly/2D1I3
Click the “like” button on any of our web posts at http://InvisibleIllnessWeek.com
RSVP to the “event” http://ow.ly/2D1A5* Share anything (the Cause, Event, Group, etc.) with a friend!
Post this as your status!
Nearly 1 in 2 people live w/ a chronic condition, most of them invisible. If it’s not you, it’s someone you love. In recognition of Invisible Illness Awareness Week, http://InvisibleIllnessWeek.com post this as your status so someone who is suffering silently knows someone cares!
Popularity: 6% [?]
Special Thanks for YOUR Help!
September 12, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, How to Help
I’ve heard from more of you who have gone the extra mile in spreading the word about Invisible Illness Week and wanted to say thank you!
Sarah wrote to us and let us know she had sent out some press releases. “I have submitted my invisible illness article to our local papers and quite a few national ones, including Associated Press.” Thanks, Sarah! That does help so much!
And one woman said she was speaking at her church’s retreat about invisible illness. I asked her to share how that had come about. [I feel terrible I have searched everywhere for her name and cannot find it!] She emailed me back, “We have a ‘retreat’ and it is really not a retreat, it is once a month at the church and about maybe 8 – 13 ladies. The group and the minister, mainly the minister arranges for speakers for each meeting. Last year in honor of Pennsylvania proclaiming Women In Pain Awareness (WIPA) Month I offered to do a workshop on WIPA. This year I am making it invisible disabilities! All prayers are appreciated.
Lisa
Popularity: 4% [?]
Did You Know This is…. PAINWeek?
September 8, 2010 by admin
Filed under Free Ways to Help
What in the world is PAINWeek and why “celebrate” it?
PAINWeek is the national pain conference for frontline clinicians. The collective goal and vision of PAINWeek is to disseminate knowledge and tools to frontline clinicians who are faced with treating the majority of patients in pain.
PAINWeek is the only national pain conference that has been developed to meet the educational needs of physicians, nursing professionals, physician assistants, dentists, pharmacists, psychologists, and podiatrists.
PAINWeek offers a diverse curriculum and multidisciplinary faculty who will present courses in the following areas: addiction, complementary & alternative medicine, geriatrics, health coaching, hypnosis, medical/legal, narcoterrorism, neurology, pain & chemical dependency, palliative care, pediatrics, pharmacology, physical medicine & rehabilitation, primary care, regional pain syndromes, and rheumatology.
Melanie Thernstrom, author of the book that was released just this month, The Pain Chronicles: Cures, Myths, Mysteries, Prayers, Diaries, Brain Scans, Healing, and the Science of Suffering, will be the keynote speaker.
Though you may not be a professional who needs any more knowledge of pain. . . it’s good to know what is out there and when you are speaking to your physician about Invisible Illness Week or other awareness events, it’s always nice to pass along a brochure from an event such as PAINWeek to them that is planned for them specifically.
Popularity: 3% [?]
Invisible Illness Week Joins American Pain Foundation to Endorse the Virtual March on Washington
September 7, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, How to Help
September is Pain Awareness Month. Pain affects more Americans than diabetes, heart disease and cancer combined, and is a leading cause of disability in the United States. Yet, it remains woefully undertreated and misunderstood, resulting in needless suffering .
This September, the National Invisible Chronic Illness Awareness Week campaign is joining with the American Pain Foundation to endorse the Virtual March on Washington to raise awareness about the barriers to accessing appropriate and effective pain management and the desperate need to improve pain care for all Americans.
Go to www.painfoundation.org/virtualmarch to participate in the march.
Opportunities to engage include: writing your legislator, watching condition specific videos, chatting with others affected by pain and adding your voice to the 10,000 Voices campaign. You can also use resources in the PAM Advocacy Toolkit to host an event in your local community or get tips and templates for writing a letter to the editor. Go to www.APFActionNetwork.org to see how. Tell YOUR story. Join us to create change!
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- Creating Pain Awareness Through Photography (invisibleillnessweek.com)
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Popularity: 5% [?]
What Illness/Health Related Newsletters Do You Get?
September 3, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help, What's New, How to Help
Between all of us with a variety of chronic illnesses and symptoms, there are hundreds of thousands of newsletters and ezines out there on the internet. Since many of us live with different illnesses than our friends, we actually have quite a few editors we can reach in a short time.
I am letting the editors of the newsletters I receive know about Invisible Illness Awareness Week.
I am just going through the newsletter ezines I’ve received in the last few weeks and have hit “reply” or “contact” and sent them an email sort of like this (be sure to personalize yours and keep it short)
Keep in mind that the easier you can make it for them to tell others the more likely they will! So be sure to include the paragraph that has the description they can copy and paste.
Dear (name):
I recently received your newsletter and enjoyed it as always, especially the part about (what I liked here).
I wanted to call your attention to the date of September 13-19, 2010 which is National Invisible Chronic Illness Awareness Week.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. You can find more information at http://InvisibleIllnessWeek.com
Thank you so much for passing this along!
(Your name)
Popularity: 4% [?]
Let Your Church Know About Invisible Illness Awareness Week
September 3, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
Nearly 1 in 2 people in the US have a chronic condition. . . This includes people sitting in pews too! Invisible Illness Week is sponsored by Rest Ministries which is the largest Christian organization that specifically serves the chronically ill.
About 300 HopeKeepers groups exists around the USA and beyond too (find a HopeKeepers group near you or start a HopeKeepers group yourself!)
Pastors actually receive very little education in seminary that specifically discusses how to reach out to the chronically ill. They may learn to counsel a bit, pray, and pray for healing, but 6 weeks later-when the person has not been healed– it can be confusing as to what to say and do then.
Now is a great time to introduce Rest Ministries to your pastoral staff. There are some simple ways to increase awareness, by just emailing your pastor about the event. (A description is below that can be edited.)
If you need something to include on a resource table Beyond Casseroles bookmarks and Rest Ministries brochures are perfect give-aways. If your church will approve it, you may wish to get up and share a bit about chronic illness, Rest Ministries, or your testimony.
We are here to answer any questions! And if your pastor does not seem enthused. . . that’s okay. Don’t take it personally. If you are considering starting a HopeKeepers group or some kind of chronic illness ministry, “How to Start a Chronic Illness Pain Ministry” a new book by our founder, Lisa Copen, has some great tips regarding the emotions of it all, as well as the practical tips.
We recommend sending off a short email to your pastor and let him know that you will follow up with a phone call in a couple days. And then call him! If the pastor is very busy or oversees a huge church, you may wish to choose a pastoral staff member that oversees those who are ill, caregivers, the women’s ministry director, etc. Connect with the person who you believe will most connect with your passion of chronic illness ministry.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event began in 2002 by Lisa Copen, founder of Rest Ministries, a national Christian organization that serves the chronically ill and an affiliate of Joni and Friends, the ministry of Joni Eareckson Tada. The week has a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com .
Popularity: 3% [?]
Let Your Local Illness Organization Know
September 2, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
Do you have a local association or organization that you know about or attend a support group meeting? For example, the Arthritis Foundation or the Multiple Sclerosis Society are wonderful organizations.
There are literally thousands of them that serve even the rarest diseases. If you can take just a few minutes today or tomorrow and pick up the phone and call a few of them (even just one!) it would help us spread the word.
Wondering what to say? Here is a sample script:
Hi, my name is _____. Is there someone there I could speak with about events or programs?
Hi, my name is _____. I have (name of illness) and I just wanted to let the staff of your organization know about something I am involved with, It’s called Invisible Illness Awareness Week. It’s a national event to increase awareness that about 1 in 2 people in the U.S. live with a chronic illness and about 96% of the conditions are invisible.
[Oh, when is this?]
It is September 13-19, so very soon, but I wanted to make sure that you knew about it. It’s been around since 2002 and during the entire week there is an online virtual conference.
[That sounds interesting. And how you involved?]
Actually, I am just helping out the volunteers in spreading the word. The virtual conference is free and there are other things they are doing as well, such as having hundreds of bloggers blog about invisible illness, that kind of thing.
[I see. And how can I get more information?]
Everything is at the web site invisibleillnessweek.com – There are press releases, a video about the week, media information, etc. If you have any kind of emailed newsletter or place for events to list it, we just want to make sure people know about the free conference.
There are some short blurbs on the web site that can be copy and pasted directly into your email newsletter if you’d like to keep it simple too.
Thank you so much for your time. I know you are very busy and I appreciate that fact that you care.
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Invisible Illness Week Bloggers Make an Impact!
September 1, 2010 by admin
Filed under Free Ways to Help, Online Ways to Help
Are you blogging for Invisible Illness Week?
It’s easy… your topic can be on anything to do with your illness, a friend’s illness, your experience, whatever! We’d love to have join us.
You can also add the badge to the right to let people know and don’t forget to sign up at Bloggers Unite so we know where to find your blog so we can come read it!
Every little bit helps!
Popularity: 3% [?]
How and Why YOU Can Help Invisible Illness Awareness Week
September 1, 2010 by admin
Filed under Free Ways to Help, What's New, How to Help
National Invisible Chronic Illness Awareness Week starts in just a couple of weeks, Sept 13-19, 2010.
If you would like to be of assistance there are a variety of ways that collectively we can make a huge difference. If you have a few minutes a day over the next couple of weeks, by just making a quick call, sending off a couple of emails, or posting something to your social network can help us spread the word a great deal.
We don’t have a room full of volunteers on the telephones. We don’t have a budget for this undertaking. It’s me (typing this at my son’s karate class and then uploading it tonight after he goes to bed) and YOU! So, can you see why any help you give us a huge help? (smile)
So watch this web site each day (get our emails to make it really easy PLUS you will get our 80-page ebook for free when you sign up with tips for living with chronic illness.
And then, to encourage others, when you do make a phone call or email a newsletter editor, whatever… post in the comments below (each post on the blog has a place for your comments). We’d love to say thanks as well as celebrate with you!
In summary:
Ways to help: watch the web site for specific tips, but ANYTHING you touch on our web site helps. For example, if you are on Facebook you may be familiar with the “Like” button that is on all of our web pages. Be sure to click that so others see. Email illness newsletter editors; email your friends, etc.
Main things to know about II Week:
- Our 2010 Theme is “Each One Can Reach One” – anyone can leave an anonymous sticky note anywhere to share encouragement that someone will find!
- Sign up to receive the daily emails between now and 9/26 and receive our free ebook “Chronic Illness Tips: 263 Ways to Do More Than Just Get By.” This has over 80-pages of tips from the “experts” who live with illness like Jenni Prokopy, Georgia Shaffer, Pam Farrel and more.
- Our main event? Sept 13-17, M-F we will have our virtual conference with 5 90-minute podcasts featuring special guests with topics from coping skills, relationships and finances.
Here is a quick description you can copy and paste.
September 13-19, 2010 is National Invisible Chronic Illness Awareness Week. This annual event, started in 2002 by Lisa Copen, features a variety of ways to get involved including a virtual conference September 13-17 online for free with speakers each morning 10:30 – 12 USA Pacific time.
There is a Meme “30 Things You May Not Know About My Invisible Illness”, you can sign up to blog for the cause, read guest bloggers’ posts, and get involved in the campaign on Facebook. There is even a free 80-page ebook when you sign up for email updates, with 263 tips!
With nearly 1 in 2 people living with a chronic condition, about 96% of those people are suffering silently with invisible illnesses. See InvisibleIllnessWeek.com
Lisa
Popularity: 3% [?]
