Connect with Other II Week Participants

Do you wish to connect with other participants of Invisible Illness Week? If so, we invite you to join the Invisible Illness Week GROUP in the Sunroom social network of Rest Ministries.

During the week while 4 seminars are happening each day, this is where we will also send you if you want to ask more questions of listeners on a particular seminar topic, if you have questions for the speakers that were not answered during the seminar, etc.

We are asking our speakers to sign in and check to see if anyone needs any additional information. If our speakers have handouts, this is where they will post a link to them.

The Rest Ministries social network, The Sunroom, has over 1300 participants and is a Christian environment for those with chronic illness. We understand that during Invisible Illness Week some of those involved may have different faiths or not have a religious preference. We ask that everyone be respectful of one another. If you do not wish to participate after Invisible Illness Week you can delete your membership.

Another option is to leave comments at the Blog Talk Radio web site where other listeners or the speakers can connect with you.

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Chronically Ill Are Perfect Audience for Virtual Conference, September 14-18

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

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Chronically Ill Are Perfect Audience for Virtual Conference, September 14-18

Hard beds, traveling expenses, long walks to conference rooms, peers going overboard on the perfume, and extreme fatigue are predictably part of your average conference. For the chronically ill, however, these inconveniences oftentimes make attending an actual conference impossible. National Invisible Chronic Illness Awareness Week celebrates its seventh year, and with the power of social networking, 009’s “virtual” conference September 14-18, 2009 is sure to be a success.

“I can only leave the house once a week, twice if I am really lucky, so a weeklong conference is normally impossible for me,” says Juliann Krute who lives with Ehlers-Danlos Syndrome and many other illnesses. “Having a conference that I can attend—even if I am in too much pain to get out of bed—is fantastic!”

The conference will feature twenty live seminars via Blog Talk Radio that anyone around the globe can listen to LIVE or archived. The 2008 workshops have had over 12,000 listeners and are also available on iTunes.

Topics for 2009’s conference include:
• Applying and Winning Disability Assistance When You Are Chronically Ill
• Managing College with a Chronic Illness
• Find the Job You Desire and Can Do
• It’s OK to say NO: Building Healthy Boundaries
• Coping with Chronic Illness in Your Marriage

Guest speakers are some of the top chronic illness advocates online today including Jenni Prokopy of chronicababe.com; Rosalind Joffe of keepworkinggirlfriend.com; Maureen Pratt, author of Peace in the Storm, and Christine Miserandino of butyoudontlooksick.com. They are joined by.Kelly Rouba, former Ms. Wheelchair NJ 2007, and best-selling authors on marriage, Bill and Pam Farrel.

Invisible Illness Week was founded by and is sponsored by Rest Ministries, the largest Christian organization that serves the chronically ill.

Lisa Copen, 40, founder of Rest Ministries and creator behind National Invisible Chronic Illness Awareness Week says, “Regardless of where one’s spiritual ties are, there is an fundamental human desire to feel understood, to feel like those you love have some idea about what you are going through.” Copen, who is explored this in her book Why Can’t I Make People Understand: Discovering the Validation Those With Chronic Illness Seek and Why says, “One of the most difficult adjustments to illness is that you feel life is passing you by and no one around you even realizes it. We hope through our conference we can provide a place where people find the true source of being validated in their pain, how to live joyfully despite their illness, and of course, we want to increase awareness about how many suffer silently. Like our theme says, ‘A Little Help Gives a Lot of Hope.’ It really does.”

For more details about the free conference and other resources visit www.invisibleillnessweek.com

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Invisible Illness Week Features Virtual Conference and Fresh Awareness

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

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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

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

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30 Things About My Invisible Illness You May Not Know

We’ve all seen the list “20 things about me” “50 thing about me you didn’t know…” They can actually be interesting if you want to get to know the person better! We’ll we’ve got one I haven’t seen anywhere yet, “30 Things About My Invisible Illness You May Not Know.”

Just copy and paste it below and put it up on your blog, send it to your friends, paste in on Facebook (if it’s too long put it in your “notes” section.)

THEN… post a COMMENT BELOW with the link to where you posted it and we are going to choose 2 people to receive a prize Sept 5th, 2009.

Let’s spread the word about II Week this way and it’s a wonderful way to share a little bit about your life. And don’t forget to add the last paragraph for people know where to find us!

You can see my answers here (Lisa)

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
2. I was diagnosed with it in the year:
3. But I had symptoms since:
4. The biggest adjustment I’ve had to make is:
5. Most people assume:
6. The hardest part about mornings are:
7. My favorite medical TV show is:
8. A gadget I couldn’t live without is:
9. The hardest part about nights are:
10. Each day I take __ pills & vitamins. (No comments, please)
11. Regarding alternative treatments I:
12. If I had to choose between an invisible illness or visible I would choose:
13. Regarding working and career:
14. People would be surprised to know:
15. The hardest thing to accept about my new reality has been:
16. Something I never thought I could do with my illness that I did was:
17. The commercials about my illness:
18. Something I really miss doing since I was diagnosed is:
19. It was really hard to have to give up:
20. A new hobby I have taken up since my diagnosis is:
21. If I could have one day of feeling normal again I would:
22. My illness has taught me:
23. Want to know a secret? One thing people say that gets under my skin is:
24. But I love it when people:
25. My favorite motto, scripture, quote that gets me through tough times is:
26. When someone is diagnosed I’d like to tell them:
27. Something that has surprised me about living with an illness is:
28. The nicest thing someone did for me when I wasn’t feeling well was:
29. I’m involved with Invisible Illness Week because:
30. The fact that you read this list makes me feel:

Find out more about National Invisible Chronic Illness Awareness Week and the 5-day free virtual conference with 20 speakers Sept 14-18, 2009 at www.invisibleillness.com

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DID YOU FILL OUT THE MEME ABOVE? If so, tell us where to find your answers in the comments below and by listing your blog, FB page, whatever, you will automatically be entered to win a prize! We are selecting 2 prize winners Saturday 9/5.

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Submit a Guest Blog

We’ve heard lots of you say “I am going to submit a guest blog post” but there are not a lot of submissions coming in and we’re afraid they are all going to come at once. We’d love to hear from you.

Submit your guest blog post today.

Popularity: 2% [?]

In Order To Appear Invisible, You Have To Be Invisible

I have, if only inadvertently, become very vocal about my illnesses (lupus and rheumatoid arthritis). When I started blogging 15 months ago, I never expected that I would become part of a virtual community of chronically ill people who are trying to raise awareness of the profound impact that illness has on patients, their families, and their friends.

I have made many friends this way, and while these alliances have become a cornerstone in helping me deal with my own illnesses, I find that I continue to do battle on a daily basis with the “outside” world, those in my immediate surroundings who are not chronically ill.

Here is an example:

Earlier this summer, I became acutely ill with a cough that I couldn’t shake. And it wasn’t until I was hacking up a lung that “normal” people started to take notice.

“Oh, are you sick,” they would ask. “You sound sick.”

And what I really felt like saying was, “I’m sick 100% of the time. This is just the 1% you’ve decided to notice.”

This is the exception rather than the rule.

The irony here is that it’s what was going on inside of me that matters. It wasn’t the fact that I was coughing up a lung (or at least sounded like I was). It was the fact that this occurred after going to the hospital for a doctor’s appointment, after riding the city bus. It is, in fact, the very invisible nature of my illnesses that were at play here. They had just decided to show themselves in a very visible, vocal way.

Those events wouldn’t cause “normal” people to get sick.

But if doctors haven’t been trained to look much deeper than giant, flashing tumors, why would we expect the rest of the world to? In many ways, illness is in the eye of the beholder.

My own mother refuses to see me as a “sick person.” But the truth is, these illnesses are my life. My life has become these illnesses. And for better or for worse, I live out each day, good or bad, because of these illnesses.

Yes, ignorance frustrates me. Because our world hasn’t been conditioned to believe in the possibility that young people can be sick – because this plays on our worst fears that the world is not a just, fair, or kind place – and that people in the prime of their lives can be struck down with no warning, with seemingly no reason, and lives can be forever changed, altered beyond comprehension.

And it also frustrates me that by virtue of that inability to understand, I am supposed to be strong, brave, resilient – any number of adjectives that describe youth and longevity. Yes, somehow, on the days when I am in so much pain that I can’t lift a half-gallon of milk to pour for my cereal, I am supposed to be strong and brave, and think that this is just some adolescent phase that I’ll grow out of?

But even for someone like me, who blogs about my illnesses, whose posts are fed through facebook, there are times when invisibility can be a good thing. When I travel to California in August, there is a very good chance that I will be wearing a mask on the plane.

I haven’t been on a plane in nearly seven years. And I’ve never had to wear a mask before. Anywhere. The thought fills me with dread – everyone is going to look and me and wonder what’s wrong with me. But given my susceptibility level, it seems like a prudent measure that I need to take.

It makes me realize that sometimes, invisibility is a luxury. The fact that I don’t have to wear illness on my sleeve all the time, while this tends to promote ignorance and unfeeling, also thwarts questions, long glances of sympathy and pity. It allows me to be in my own insular world of lupus and rheumatoid arthritis, while the rest of the world is kept at arms length, think that everything is just fine.

You don’t know what you’ve got ‘til it’s gone…

National Invisible Chronic Illness Awareness Week is important because no one is immune to illness – it can happen to anyone, anywhere, at any time – and by sharing our stories, we help to show that it is possible to live in the face of illness.

Leslie Rott is 23 years old. In April of 2008, at the age of 22, she was diagnosed with lupus and rheumatoid arthritis. She holds a bachelor’s degree in English and Sociology from the University of Michigan. She is currently working on her Ph.D. in Sociology at the U of M. She currently authors the blog Getting Closer To Myself, which chronicles her journey with chronic and invisible illness.

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Let’s Blog for Our Cause

Whether you have a blog or not, you can help us blog for Invisible Illness Week. Here are ways we need you and your stories!

If you don’t have a blog:

• You are still welcome to submit a “blog post” and be a “guest blogger” here at the Invisible Illness Week web site. We recommend reading some of our past blogger’s posts for ideas, but we are happy to consider anything of interest to those with invisible illness. We’d love to hear your reflections, ideas, stories, and more.

If you do have a blog:

• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Be a host for our founder’s Blog Tour (More information coming soon but you can sign up here now if you want. Details will be emailed to you). Lisa will have different interviews in text format that you commit to posting on a certain day. Do you know friends who blog who may be interested? We’d love to spread the word about II Week all through the blogosphere of many illnesses, from cancer to autism, migraines to arthritis, celiac disease to other rare disease.
• Submit your blog post in July for an August edition of Grand Rounds, the biggest (and first) medical blog carnival online. (Read more about this here.)
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog if you want including our 2009 Invisible Illness Week logo.

Thank you for your help! We really couldn’t do it without you!

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How YOU Can Make a Difference

There are lots of ways to get involved in National Invisible Chronic Illness Awareness Week. In fact, just spreading the word that such a week exists seems to be therapeutic to some of us who are tired of hearing, “Are you still sick?”

We are always updating our web site under the category What to Do – How to Help, but if you are looking for a fast list, here are some things you can do that will all help us a lot! Most have links with more details if it’s not self-explanatory.

Bloggers or Writers

• Write a blog post for our web site as a guest blogger. It can be something fresh or something you have posted before.
• Submit a blog post you wrote in the past or just yesterday as a guest blogger here on our web site.
• Join Bloggers Unite to commit to blogging on your own blog about invisible illness.
• Don’t forget that on our front page we have a button, widgets, all kinds of things you can add to your blog.

Do You Twitter?

• Follow us @invisibleillwk
• Retweet our tweets to let more people know about II Week
• Use the hashtag #iiwk10 when tweeting
• Tweet out our 20 Things to Say to a Chronically Ill Person and 20 Things to NOT Say to a Chronically Ill Person
  
• Twitter 25 facts about illness in 25 days
  
• Get a Twibbon for your profile photo

Are You on Facebook?

• Join our cause & tell your friends and family The easy address to rememberis http://www.InvisibleIllnessOnFacebook.com
• Whatever you see on our web site that you like… scroll down to the share button and share it on Facebook. It’s easy and helps more than practically anything else you can do to help!
• Ask your friends to join the cause.
• Give a donation to the cause (We are aiming for $1900 to help us cover costs.)

Pray!

• We have a prayer group jut for the week – join us if you’d like.

Do You Have a Web Site?

• How to Put II Week Blog on Your Site
• Add our button to your site!

Buy Some Goodies to Help us Financially and Also Spread the Word

• We have some great II Week items to help you share about your passion for the cause.

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We’ve Joined Facebook!

Okay, so frankly I am still figuring out exactly all that Facebook offers, but some of you are way ahead and me, so maybe you can help us along.

We are listed as a “cause” and of course, our cause is National Invisible Chronic Illness Awareness Week (I know… you’re shocked, huh?)

So head on over and sign up for the II Week Facebook “cause.”

Together, we can make a difference (and I really mean together… because I need your help! Anyone a Facebook expert who would like to help me out here?)

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MEDIA RELEASE: Blogging for Awareness of Invisible Illness Week Unites Thousands

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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