CNN Health features a chat based on interest from Invisible Illness Awareness Week, with founder Lisa Copen, hosting.
Thank you for all your help with Invisible Illness Awareness Week. I have some follow up emails set to come out in future days, but this one took priority about the opportunity over at CNN Health.
When we live with invisible illnesses we often say no one understands. They don’t understand the pain, the fatigue, the strength it takes to push through it all. They don’t get our fear of infections, the stress of the bills, none of it.
And we wish the media would do more to cover invisible illness than just show celebrities who seem to be “back to their old life” once they have taken certain medications.
Well, CNN Health is paying attention! Last week they featured your “Images of Hope” from Invisible Illness Awareness Week. I was even asked to write an article for CNN Health on how to talk to one with a chronic illness. And they received over 140 comments in just hours. They listened . . . to you!
This week, in response to the article and the commenters, CNN Health is hosting a chat over at their Facebook page, http://Facebook.com/CNNHealth . It will be this Friday, September 21, 2012 at 9 AM pacific, 12 Noon Eastern. And I will be co-hosting it along with Sarah from CNN staff.
They are giving their readers a forum to discuss what is on our minds. And personally,
I would love for TONS of us to show up.
Now, this is for just 1 hour. I know some of you will not be able to come. If you cannot make it, will you take just a minute to comment on this post, and thank the health editor over at CNN Health, Ashley Hayes, for the opportunity. She is the one making a difference.
Too often we criticize the media. They don’t tell our story, or when they do, we complain that they didn’t tell our story the right way. But they are giving you and I a chance to tell our story–and that is vital.
If they do not hear from us, from people like you and I who live with invisible illnesses, they will not know that there is a story to tell. So, show up if you can. Put it on your calendar–right now. And if you can’t come, comment below.
Every little bit matters–because you–and your story–matter.
Special thanks to Elizabeth Cohen, CNN Senior Medical Correspondent for tweeting out about the chat!
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If you live with an invisible illness, you may feel alone in your experience, but e-patient bloggers are using it as an opportunity to speak about the pain you never see.
Feel free to share this press release in any way, or a quote from it–on your blog, Facebook, Twitter, Pin it, whatever! We appreciate your help and the e-patients who are involved.
San Diego, CA — (SBWIRE) — 08/28/2012 — When it comes to bloggers with passion, “e-patient bloggers” who share about their illness journeys, have changed how people find encouragement for living with their illness. A recent study found that 41% of e-patients have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog, and 38% say it changed the way they cope with a chronic condition or manage pain.*
National Invisible Chronic Illness Awareness Week (NICIAW), established in 2002, is September 10-16, 2012 and e-patient bloggers are the inspirational force behind the campaign’s success.
“These e-patient bloggers are strong advocates for increasing awareness for causes such as invisible illness,” shares Lisa Copen, founder and coordinator for NICIAW. “They open up their hearts and become vulnerable in order to educate others and increase understanding among the healthy community.”
InvisibleIllnessWeek.com features guest bloggers through September 16th that focus on a variety of topics that impact the lives of those who are chronically ill. These include being the spouse of one with illness, learning how to ask for help, and being a part of the patient community.
Anyone is welcome to participate in blogging about their illness, the emotions involved, their medical journey, or what they have learned. At InvisibleIllnessWeek.com a blogger can instantly link his or her blog to the campaign’s website. Bloggers can also download the badge that shares their intent to blog about Invisible Illness Week or personal issues of living with an illness.
Copen shares, “The personal factor of reading about a similar health or illness experience of another person online, can sometimes be more influential than classes or doctor’s instructions when it comes to learning to cope with pain.”
Research has shown that among the those whose most recent online search affected their health, 56% say it changed their overall approach to maintaining their health or the health of someone they help take care of.*
Many e-patient bloggers are participating in the Invisible Illness Week Meme, “30 Things About My Invisible Illness You May Not Know.” This year’s theme, “Invisible Illness? Share Your Visible Hope!” encourages people to post photos via the website that show things that give them hope, whether it is a sunset, a pet, or a grandchild.
During Invisible Illness Week people can participate in the virtual conference by watching seminars with a variety of speakers on topics such as how your personality may influence your style of coping, how to work from home when ill, and to how to explain your illness to others. For more information see http://InvisibleIllnessWeek.com .
*The Social Life of Health Information, by Susannah Fox, Sydney Jones, 2009
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Lisa Copen, founder of Rest Ministries, Inc., the largest Christian organization specifically for those with chronic illness or pain won theaward for Women’s Health Hero: Audience Choice. On May 11, 2009 Our Bodies Ourselves announced the 2009 Womens’ Health Heroes, honoring the work of women’s health advocates worldwide, marking OBOS’s first annual effort to spotlight the diversity of care, education and activism in communities around the world.
See OBOS’s announcement, as well as the nomination and kind comments for Lisa here:
“Every day millions of people worldwide do incredible work to improve the health and well-being of women, and we want to bring attention to their efforts,” said Our Bodies Ourselves Executive Director Judy Norsigian. “Many of our heroes accomplish so much with very few resources, particularly on the frontlines of public health, where gaps in the quality of care and healthcare access remain persistent.”
The inaugural group, chosen from close to 100 nominations, represents seven countries: United States (13), Canada (2), Australia, The Netherlands, Nigeria, United Kingdom, Ukraine.
Copen, who began Rest Ministries in 1997 after living four years with rheumatoid arthritis and not finding illness support that was faith-based says, “It’s a great honor to win this award, but more exciting is the opportunity to have the opportunity for Rest Ministries to gain the exposure. We sponsor National Invisible Chronic Illness Awareness Week each September and have a five-day virtual conference online. I hope that this award will be a reminder of the resources that are out there to encourage people while living with illness.”
To find out more about Rest Ministries visit our web site at www.restministries.org and information for National Invisible Chronic Illness Awareness Week is now being updated for 2009 at www.invisibleillnessweek.com
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Living with an invisible illness can cause heartache and bitterness when one feels no one understands the significance of the illness. Invisible Illness Week provides that validation that people with invisible diseases often seek.
San Diego, CA — (SBWIRE) — 08/27/2008 — While we assume that most people are generally healthy, you may be surprised to find out that an alarming 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 people have invisible illnesses.
National Invisible Chronic Illness Awareness Week is being held this year, September 8-14, 2008. It’s a secular event sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill. Visit the invisible illness awareness campaign’s web site at www.invisibleillnessblog.org . You can be encouraged through dozens of articles, including daily guest bloggers, find ideas to get involved in the outreach, and goodies to help promote awareness, from silicone bracelets to brochures. Tired of those looks when you park in a handicapped spot? Be sure to pick up a license plate or bumper sticker.
The focal point of the awareness campaign is September 8-12 (M-F) during which 20 telephone seminars will be held on a variety of topics and are open to anyone. Topics may also be of interest to those with loved-ones who have an illness. Some seminars 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
- Secrets of Paying for Medical Care
- 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.”
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 helpful information and practical tools to live the best life possible.”
Through the guest bloggers of Invisible Illness Week, to 20 seminars that supply tools to ensure that one is cared for–both body and soul–National Invisible Chronic Illness Awareness Week is succeeding in meeting that goal.
Find out more information and receive daily updates at http://www.invisibleillnessblog.org
National Invisible Chronic Illness Awareness Week
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Chronic illness statistics are staggering, with nearly 1 in 2 people in the USA living with a chronic condition and, according to U.S. Census Bureau, about 96% of illnesses are invisible. With hundreds of thousands of people on the Internet searching for health information and support, thousands of bloggers now post daily journals about the emotional challenges they live with while facing a daily chronic illness filled with pain.
National Invisible Chronic Illness Awareness Week, September 8-14, 2008, is inviting these blogs to have a substantial role in their awareness campaign. For example, part of their outreach includes over thirty days of guest bloggers as well as bloggers across the internet posting about invisible illness matters. For example, if you have an invisible illness-and a legal handicapped parking placard-you’ve likely faced a few stares and questions if you park in the blue spot since your invisible illness does not require the use of a wheelchair.
All over the internet, bloggers are putting their illness awareness efforts together to join in helping more people become aware of invisible illnesses. They show their support by posting about invisible illness issues, on their own blog. A downloadable badge that says, “I’m blogging for Invisible Illness Awareness Week” can spread the word about their commitment to the cause. Plus, bloggers are also thanked publicly each Friday on the Invisible Illness Week blog, which can give them lots of extra exposure for their own web site. Bloggers can post anytime, but they are also encouraged to specifically post on September 8th to kick off the week.
Lisa Copen, who founded National Invisible Chronic Illness Awareness Week in 2002 says, “Though we live with thousands of different illnesses, we have more in common than not. For example, illness impacts our families, careers, finances and daily living, to name a few. We can all learn from one another and share during this journey.” She adds, “And frankly, people are tired of hearing, ‘But you look so good!’ and they want others to know that their illness is legitimate despite how well they seem to be holding it all together.”
Laurie Edwards is the author of a recently published book called, “Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties.” She has blogged about her illness since 2006 and says, “When you are a young adult people expect you to put in long hours to establish a career, to jump into the dating world, and to build a life for yourself. But they certainly don’t expect you to be sick. There’s no such thing as ‘too young’ to be sick! That is just one of the many reasons why Invisible Illness Week is so important!”
If you would like to join this unique opportunity to blog for awareness about invisible illnesses, see www.invisibleillness.wordpress.com . You can also receive updates, participate in surveys, win prizes, and find out more about the telephone workshops at the Invisible Illness Week web site: www.invisibleillness.com .
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Lisa Copen, Founder of Rest Ministries, the sponsor of this annual event says, “Illness can signify the loss of one’s plans and even dreams, but most often people who live with invisible illness find a new purpose they would not have imagined under any other set of circumstances.”
The next month will feature bloggers on the topic of illness, all of who have found a renewed sense of direction, despite the life-altering changes illness has brought into their lives.
Copen, 39, who was diagnosed with rheumatoid arthritis and fibromyalgia at the age of 24, remembers searching for what her purpose would be within her new limitations.
“I had always planned to work for a nonprofit doing something to help others, but I never felt I was efficient or empathetic enough because I had not walked in the shoes of those I served. Now, through my illness ministry and books on aspects of coping with illness, I have the chance to use what I experience each day to reach out to others. It’s my hope that they will also find hope despite their illness, as they discover that new sense of purpose in the pain.”
To find out more about the telephone seminars that will be held September 8-12, as well as the invisible illness week awareness outreach products, visit www.invisibleillness.com .
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